Base of Tongue Cancer Survivors! Group

About This Group

Anyone who has had base of tongue cancer or is a friend or family member and wants to talk about this very rare cancer is welcome! I have suvived 12 years since being diagnosed with metastatic base of tongue cancer and would love to meet someone else who has gone through this as well!

January 23rd, 2012

Happy Chinese New Year

posted by charm2017 on 6:55 am

I hope that this new year of the Dragon finds my fellow base of tongue cancer survivors well.
Although I still need a feeding tube and have a speech impediment, Life is good.    I'm going to switch to a low profile button in the next two months when my current tube needs to be replaced.  
It is a little disappointing to see how little traffic this section of Livestrong gets, especially since it is such a good resource and website.    As I mentioned, Livestrong has profiled the founder of a on line support forum and information web site :  Brian Hill of the Oral Cancer Foundation.    It gets at least 10  new messages and posts every day for those of you who need a more active forum .
http://oralcancersupport.org/forums/
A recent study has shown that the survival rates for base of tongue cancer increased dramatically the last twenty years and it's up to 50% for stage IV patients like myself.
We Base of Tongue survivors still have more issues with swallowing, speech, and surgical complications than other oral cancer patients though.
Again, a Happy new Year to you all
Charm

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September 30th, 2011

Base of tongue cancer

posted by john-68 on 7:51 am

In the middle of July the Doctor found a cancerous tumor on the base of my tongue. I made a appointment with Mayo Clinic in Rochester, MN. The pet scan revealed their was a small cancerous tumor in one lymph node plus the base of my tongue, they felt the best treatment would be surgery which I had on Aug 5th. During surgery they removed a 4 cm tumor on the base of my tongue (other words 1/3 of the base of my tongue) and a small tumor on the lymph node. After everything came back from the lab, they were sure all the cancer was removed and no chemo or radiation was recommended. It has been 2 months since the surgery and my major problems are I can't swallow any of my saliva and can't eat anything except liquids. I choke when I try to eat anything soft. Is this normal? Am I being to impatient?

by charm2017 on Oct 2, 2011 at 7:18 am

John
On the positive side, you are doing better than I did after very similar surgery back in March 2009.   I am on feeding tube for life now.   But it sounds like there is still hope for you.  My recommendation is to get a prescription from your doctor for a Modified Barium Swallow test.  It's administered by a Speech Language Therapist in conjunction with a radiology technician.     It will show exactly what the swallowing problems are plus give a baseline to compare with to judge if swallowing therapy works.   I did swallowing therapy for a year, even doing the Electrical Stimulation - VitalStim.   While it did not work for me, my situation is not normal since my surgery was a year after full radiation and chemo so the throat muscles were already scarred plus I had a second round of radiation.   with a good swallowing therapy program - covered by most insurance companies under physical therapy- you should improve.   The exercises work for most people.
Like my other post, I recommend that in addition to posting here, you join the OCF forum
oralcancersupport.org/forums/
oralcancersupport.org/forums/
where you will get not only answers but support daily in your exploration of the new normal
Keep the Faith
Charm
OCF Patient Advocate

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September 27th, 2011

New here. BOT cancer

posted by Mkstevenson on 12:21 pm

Hey all I am 5 days past my last of 35 radiation treatments and wondering if I will ever feel better. The chemo rad took a heavy toll on me. I am wondering how long I might expect to feel sick. My first post on anything and not sure this is still an active board.

by charm2017 on Oct 2, 2011 at 7:11 am

I have had BOT Cancer Stage IV radiation and chemo in 2007 from Sept thru Nov.    Few people realize that it is the first two weeks AFTER all radiation and chemo that you really are hammered.     One of the great things about an active BOT board like the Oral Cancer Foundation forum  (one ot the links below will work) is the ability to get an answer within one day instead of one week or month like here.  As you can see, nobody posted here for two full months before you and then it was just me.
oralcancersupport.org/forums/
oralcancersupport.org/forums/
Don't get me wrong, LIVESTRONG is awesome but it aims at the entire Cancer community so I found OCF (the founder is profiled right here on Livestrong and was an early supporter) focus just on oral cancer to work better for me.   No reason a cancer survivor cannot be part of both. 
Keep the Faith
Charm

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July 21st, 2011

Top Ten People Oral Cancer patients need

posted by charm2017 on 8:37 am

Here is a list compiled from articles on the Oral Cancer Foundation's web site.    Top Ten People Oral Cancer Patients Need   Surgeon (usually an ENT) Radiation Oncologist (RO) Chemotherapy Oncologist (MO) Dental Specialist (Dentist or Prosthodontist) Nutritionist Physical Therapist Speech Therapist Caregiver Support group (such as OCF Forum or Livestrong) Nurses (hospital and visiting)

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March 23rd, 2011

IPT Chemotherapy

posted by wamk40 on 1:53 pm

 Regarding tongue cancer, (Squamous carcinoma) has anyone ever done IPT Chemotherapy?

by charm2017 on Mar 28, 2011 at 12:26 pm

IPT does not work.   Here is an excerpt from QuackWatch
IPT's promoters use vague and misleading language to make it seem legitimate. It is not. When examined even casually, the claimed "cures" are bogus. Besides the danger of insulin shock and death, using the wrong chemotherapeutic agent(s) or doses that are too low can foster the development of resistant cancer cell strains. Thus, IPT can prevent appropriate chemotherapy from working later and make an otherwise curable cancer incurable.
You can read the full expose of this bogus therapy here
www.quackwatch.org/01QuackeryRelatedTopics/Cancer/ipt.html
Like it or not, only radiation, real chemotherapy and/or surgery can cure tongue cancer.  IPT is not real chemotherapy and you are putting your life at risk plus wasting your money. 
 
 

by Maitake on Apr 9, 2011 at 3:09 am

wamk40. Please do some investigation and talk to several of the doctors who perform IPT. And whether they have had success using IPT with tongue cancer.
And p.s.  don't expect to get any useful info at quack watch. If the treatment is not directly linked to Pharmaceutical or Medical Device companies' products, quackwatch will do their best to squash it.
And brainwash the general public.
IPT may or may not be suitable for you. You'd better talk to health professionals who are experienced with it. And make your own decisions. 
I wonder how cyroablation / laser ablation / or radio frequency ablation work for that type of location.
Or possibly stereotactic body radiosurgery, like cyberknife?
Good luck and never give up!   

by charm2017 on Apr 17, 2011 at 9:00 am

Wamk40 - so far zero patients who have had IPT and it worked have replied to you.  Not surprising since it is does not work.   I disagree with Maitake on quackwatch but he is however right that cyberknife radiation can be used  but only at advanced facilities.  I had a full week of cyberknife radiation when my base of tongue cancer came back.  They won't use it many places yet but it was far easier and better than IMRT.  
My advice is to go to Comprehensive Cancer Center and get real treatment.  If IPT worked, there would be survivors who would vouch for it.
charm

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February 22nd, 2011

Starting treatment

posted by yerflib on 6:09 am

I am starting Chemo and Radiation treatment tommorow and have no idea what to expect.  The chemo Dr. gave me a mild sedative I am to take to help with the fear and loathing that I am going through.  It is the fear of the unknown I guess.  I will have 3 chemo sessions and 7 weeks of radiation.  I am in good health and spirits are usaly up but as the day approches the anxiety increases.  I know the hospipital is very good and the doctors are some of the best in the counrty....still it is all very frieghting.

by charm2017 on Feb 24, 2011 at 4:51 pm

Hi Bill Again, I heartily recommend that you join the Oral Cancer Foundation forum.  It's free and your post here would have garnered several helpful replies within a day.  As you can see, this forum for base of tongue cancer is dead as dead can be with no follow ups or sense of community.  so cut and paste this URL here and join up (the link insert button on this site is pretty primative   oralcancersupport.org/forums  I smiled at your Hunter S Thompson reference, pretty clever.  I know you started TX yesterday, but it's not too late to get a blood test for your TSH level.  It's very important as without a baseline as to what you TSH level should be, you will have a hard time getting the help you need a year after radiation because the range of "normal" TSH is so large.   It's just a simple blood test any doctor can order.  insist on it. You should expect dry mouth, excessive mucous, fatigue and depression.    Your doctors should give you enough pain medications, starting out with oxycodone, then escalating to fentanyl patches as needed.   The most important thing i can share is that I and thousands of others have not only survived the radiation and chemotherapy you are about to undertake, but we have thrived afterwards.   My very best wishes to you and hope to see you on OCF soon Charm
oralcancersupport.org/forums/

Edited by charm2017, on February 24th, 2011 at 4:53 pm.

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February 4th, 2011

Any relationship to drinking coke

posted by karirich on 6:30 pm

I notice many of you are not drinkers, smokers, ect...I am not either and am only 44.  I am curious if any of you have been coke or sodas drinkers.  I have.  I have had them since I was very young almost every day.  Coke, water, and applejuice are about the only things I ever drink.

by charm2017 on Feb 5, 2011 at 6:57 am

Karen
If you do have oral cancer, it's most likely because of HPV.   While sugar drinks are documented to cause or aggravate many problems such as obesity, diabetes etc, no valid study has shown any relationship to cancer.
Even if everyone answered you that they had drunk soda, it would be no more meaningful than if you had asked if they had drunk milk.   Since you seem worried about your soda drinking and fruit juice posing a health problem, at least I can assure you that despite having a very rigourous no sugar diet including almost all the hidden type of "xxxx ose" incredients in even ketchup for over thiry years, it did not prevent me from having cancer.   In fact my friends and colleagues, none of whom have cancer always had soft drinks at work while I drank water.  
So my opinion is that there is no relationship between drinking coke or soda drinks and base of tongue cancer or any oral cancer.    If you otherwise exercise, don't smoke or drink and eat healthy,  you can enjoy your sugar fix relatively guilt-free. 
Best Wishes
Charm

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January 13th, 2011

Base of tongue cancer

posted by jkilly on 8:50 am

I was recently married to my wife on November 14th of 2010. She had started having problems some time ago and back in July of 2010 we went to the ER because of the lumps sticking out her neck. There was a CT scan performed and then some Antibiotics snet home as the diagnosis was an infection. We then started going to a different hospital and had three biopsys performed that all came back inconclusive. We pushe dup or wedding date so she could be placed on my insurance and then I took her to see my Family Doctor. He was great and sent us to an awesome ENT that specializes in Cancer patients. Dr. Jindal looked in her noise and down to her throat and said you have a huge tumor and he could not beleive that she was talking, eating and walking around (which was becoming more and more difficult). The bad bread (smell of death), was something that would come and go as well as the size of her neck tumors. Last Wednesday we had a PEG Tube installed and on Thursday five teeth were extracted. Monday we had a Bi-lateral Neck Disection completed and brought her home yesterday from ICU. She is home and speaking with a raspy voice. Her appetite is barely existent but she is eating some. She is currently watching The Price Is Right and enjoying being home. I have read several of the posts and have spoke with many people about the Cancer she has to gain as much information as possible. I wanted to extend my Thoughts, Hopes, and Prayers to all on this Blog. Keep up your spirits and your faith and be hopeful towards a better outcome. I feel for all of you. Oh and my wife is 46 non drinker non smoker as well. I am waiting for the results to see if she does have the HPV 16 virus or not that seems to be linked to this. The ENT has been great for her and the rest of us as he is also my wifes age and had his share of medical issues young. The staff is great and every other Dr. we have been to has bee phenominal. We are expecting to remove all of her staples on Monday afternoon. Josh

by charm2017 on Feb 3, 2011 at 11:05 am

Josh
sorry that you had to join this little group.   I hope that today, the Chinese New Year, finds your wife feeling better.   Base of tongue cancer (the same thing Michael Douglas had) usually is treated with radiation and chemotherapy first, then a neck dissection is done to mop up.   If the doctors do recommend radiation, be sure to get a simple blood test done to determine your wife's current TSH levels (thyroid hormones).  Radiation to BOT often damages the throid gland but without a baseline TSH level to compare, it's hard to treat it since the acceptable range is so high.
While my CCC doctors were top notch on Cancer, for related issues like Thyroid - "not so much".   I was not only extremely tired but also froze for two years, even in summer, and kept a winter coat on in air conditioned places yet I was constantly told:  "Your TSH levels are normal" and I did not ask for the actual numbers or test results.  Turns out however there is controversy over what is the right TSH level with labs having a 5.5, a 4.5 even though endocrinologists who went to Medical school the 21st Century consider 3.0 as the highest acceptable level.   Before TX, I had a TSH of 1.6 and after TX it shot up to 4.3.   Now that I am "on the pill", I am finally warm again.  Plus my energy is back  My TSH level has returned to 1.48
 

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January 4th, 2011

Less than 4 weeks since Last Rad Tx.

posted by debrajjennings on 11:15 am

I feel totally blessed that I am doing so well.  In two days it will mark four weeks since my last radiation treatment (12/9).  35 treatments !!!  Going through the treatment was hard - but I was surprised when all of a sudden there was just one more to go.  The 7 weeks was not as long as I thought it would be.  My neck was burned and pealed after turning this awful dirt color of brown.  My previous surgery scar got the worst of the burns.... but Silverdene and other creams helped and now my skin is as good as new... althought it feels a bit sore and numb.  I got that fricken PEG tube out yesterday!!!!  That was wonderful!  Everything about the tube I hated.  The way it felt - it constantly hurt me.  The various "formulas" that they gave me all made me throw up.  Many days I think I kept down 0 calories.  We gave up on the formula crap and put real food down the tube - very thinned cream of wheat and apple sauce, home made vegetable and fruit juices, our own "Formula" with soy milk, protein powder, honey.  I just flushed it a lot with water.  Still I had a hard time consuming 300 to 500 calories like that.  I was nausated all the time. I really think it was the tube and some of the medications.  Ended up getting IV fluids everyday for a few weeks too.  The nurse would start the IV and we would keep it in place for three days with my boyfriend giving me a liter of fluid at night at home.  All of a sudden about 4 days before Christmas I started feeling better.  I could eat a little.... milk soggy cereal, scrambled eggs with cheese, etc. I could consume lots of water.  I forced myself to get down what I could - even if it took me an hour - which it did frequently.  Now I am eating all sorts of things - I even ate carne asada.... tortillas, fried rice (with overcooked carrots, brocolli, scrambled egg, "pretend" crab, rice and a bit of soy sauce).  Last night I ate a salad to get some veges down.  I am only on Ibuprofen now.  I have maintained my weight for over a week now.  The pain gets worse about 5 or 6 at night, but I am able to sleep through the night OK.... and last night was so much better sleeping without the tube!  I wake up with more energy than I have in the past.   I still am very tired towards the end of the day or if I do too much and the pain is there.... yawning is the worse!!!  I am taking 20 minute walks each day.  I am thinking of returning to work part time around Jan 17th or th 24th.  I have lost just under 30 pounds.... but I am maintaining.  I am so pleased that I am doing so well. For a while I was depressed when I started to feel better beacause I thought I would feel better every single day - but I am now looking week to week and I am seeing that I am really doing well.  The man of my dreams has been my rock - he has helped me recover in so many ways.  Not just all the things he did/does (taking care of me, cleaning, grocery shopping, cooking, laundry) but the caring and encouragement and holding me and being there every step of the way - I could not have done this without him Debra

by charm2017 on Jan 6, 2011 at 1:07 pm

Congratulations Debra
Yes the PEG is terrible.    Sounds like you had a great caregiver.  As you can see, this forum is very quiet with almost no regular posts.     I can't speak highly enough of the OCF forum if you have questions about your recovery.    A month after radiation is not very long so don't get worried at your pace.  Actually you sound like you are doing great.    
Best wishes
Charm

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November 16th, 2010

HPV as major cause of base of tongue cancer

posted by charm2017 on 8:03 am

Hi
I've been fighting base of tongue cancer for 3 years now.   I was diagnosed back in August 2007 with Stage IV SCC BOT, T3N2MO.   I had 40 IMRT radiation treatments ( 72 GY) and 8 chemotherapy of Erbitux.    I was ecstatic when it looked like the cancer was gone.   Within the year however, right after the best Thanksgiving ever, my ENT found a lump under my tongue.   The cancer had come back and this time I needed major surgery .  I had half my tongue cut out at the base and free flap put in with skin from my wrist.   Worse, the pathology report showed perineural involvement so it looked like the cancer would come back a third time.   I was lucky that my Comprehensive Cancer Center at Georgetown Hospital could give me radiation again using Cyberknife (25 GY) and did 3 more chemo this time with Carboplatin.   Unfortunately now I need a feeding tube for the rest of my life.  Especially frustrating since I had gone the entire first TX of radiation and chemo without a PEG tube. 
I just found this group thru a google search.    In reading the posts as well as the article on liverstrong on tongue cancer, I did not see  the major medical discovery about base of tongue cancer and most of the other oral cancers : that the HPV  (not to be confused with HIV or AIDS) virus , esp type 16, the same virus that causes cervical cancer is an independent cause of BOT cancer.   I know that it was really a comfort to me to find out why I got a "smokers or drinkers' disease when I was a health and exercise nut.   Sad to say, with HPV, we are seeing more and more young people get BOT when it used to be primarily old people like me (I was 60 when diagnosed)
I usually post a lot on a internet support forum just for oral cancer patients which has over 6000 members, the Oral Cancer Foundation forum.   Plus I read the feeding tube tips from the Oley Foundation.    I've added LiveStrong to my bookmarks and wish all my fellow Base of tongue cancer survivors the very best

by sshay0100 on Nov 30, 2010 at 7:12 am

Hi Charm (?),
 
I'm 41 years old.  I have a second reoccurrence of BOT cancer and third reoccurrence of head and neck cancer.  The cancer is still localized so they will operate on it next week.  I will have my tongue and my vocal chords removed.  I will have a feeding tube and a trache tube.  I'll come out of surgery looking like C3PO.  I am blessed that we live in an age of such high technology.  ;)  
 
As an architect, I'm interested with the surgical process and even read, The Manual of Oral Reconstructive Surgery.  It's almost like a miniature remodeling project: demolition (tumor removal), isolation and prep for existing services (extending veins and arteries),  installation and tie-in (new muscle flap grafted and blood supply is restored), finishes (closing up any tissue gaps to prevent infection), sitework and irrigation (providing outlets for fluids and mucus drainage).   
 
The tumor removal part seems like an easy process, like gutting a fish.  Reconstruction sounds much more delicate.  As with all projects, workmanship is critical and skills vary between even surgeons.  I have learned that I can manage complex building projects and I can detect poor craftsmanship and bad planning, but I feel helpless now.   
 
Many times in my life I have been at a major transition point.  My first day of school, the day I got married, the day my daughter was born.  I have been scared or nervous of those big days.  I prayed a lot and asked for wisdom and guidance.   I'm praying now.  
 
I need to be able to count on myself to adapt and be brave, but I am scared.  Every night I have anxiety dreams where I am isolated, lost or running out of time.  How about you?  I'm on a variety of medications to deal with these and I imagine that without them, things could be worse.   
 
I'm in the process of cramming to learn some sign language and we're searching around for hand-held text to speech devices.   We're also reading how to discuss cancer with your child.  I have a limited mouth opening due to the radiation damage.  The clinical term for it is trismus. I've been trying to stretch my mouth open, so they won't need to remove my teeth to access my tongue.  As I'm typing this, I have a rolled up Time magazine wedged in my mouth.  My doctor didn't tell me to wedge periodicals in my mouth, but he did say, if my hatch didn't open, my teeth would need to come out.  OK Enough said.  

Edited by sshay0100, on November 30th, 2010 at 7:36 am.

by sshay0100 on Nov 30, 2010 at 7:12 am

 Last week's People Magazine had a report on film critic Roger Ebert's recovery from surgery.   He was writing a cookbook, imagine that?  I could relate that.  It's like writing about a long lost friend.  I miss eating food.  Wow     

Edited by sshay0100, on November 30th, 2010 at 7:33 am.

by charm2017 on Dec 1, 2010 at 6:45 am

SShay
Good luck on your upcoming surgery.    Most oral cancer patients experience trismus.  here is a link to a discussion about using the Therabite device, it has worked very well for me, although some OCF posters feel that tongue depressers work just as well.   Hadn't heard of using a rolled up magazine.
www.oralcancerfoundation.org/dental/trismus.htm
You may be interested in reading the experience of a doctor who lost his voicebox to surgery.  His ebook is free on the right hand side.
dribrook.blogspot.com/
Finally, this support group is very dead with almost no activity except by you and the occasional moderator reminder.     If you get lonely and want to get some support from other oral cancer patients who "get" what you are going through, I recommend joining the OCF forum.    there have been multiple discussions on how to break the news to children plus lots of other relevant posts.   It has daily activity unlike this site.   I had a laptop in the hospital recovering and posting on OCF really helped me get thru it
oralcancersupport.org/forums/
Lance Armstrong interviewed the OCF founder and encouraged him.   This livestrong website still has one interview available. 
You sound very resilent and resourceful.   Yes, I still get scared but reading about others who have been thru this same ordeal does help.
Finally, my deep sympathy and empathy on being dealt the hard hand of having the cancer come back.    It seems so unfair  after suffering so much.  
Charm
 

by sshay0100 on Dec 15, 2010 at 5:41 pm

Charm,
Thanks for the info on OCF.
 
I'm one week past my surgery and camped out in Room 1131 at Mass Eye and Ear, if anyone gets the urge to swing by, have a couple rounds of morphine and we can text each other. 
 
I plan on checking out the OCF website, I'm open to finding a forum where folks are willing to share there thoughts, fears, and perhaps some wry humor.

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November 12th, 2010

Help

posted by LAFBrooke on 8:40 am

Wanted to let everyone know that LIVESTRONG can help give info about dealing with the side effects of cancer. Contact us online or via phone for more info. Online: http://bit.ly/bdOhiE Phone: 1-866-673-7205

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November 2nd, 2010

Mouth sores already!

posted by debrajjennings on 7:40 am

After only 8 radiation treatments my mouth erupted in sores. My tongue looks like an alien tongue.  I guess I was disappointed that this happened already, but the pain is not horrible.  Eating and talking are chores, but doing OK.   27 more to go! 

by sshay0100 on Nov 10, 2010 at 4:43 am

Hi Debra,
Hang in there. Fascinating that the treatment for cancer is worse than the symptoms: like, going to the doctor for a sore throat and have them break your leg.  Sorry.  That doesn't sound very reassuring, but once you graduate from cancer treatment, you'll have all sorts of war stories to share.
 
I had a biopsy that came back positive.  I'm hoping that the sequel story is better than the original.  It has been an emotional last couple weeks.  The tumor hasn't spread and we're looking at radical surgery or chemo options.  My wife is making miracles happen by trying to get appointments with the dream team of BOT doctors. 
 
The past two years have been good and I taught my daughter how to read and do math.  She has a firm foundation that I hope will last her through her life.  We told her on Sunday that my cancer came back, and she shared it with her kindergarten class on Monday.  They were talking about Thanksgiving and she said that she is thankful that she has a daddy and hopes that my cancer will go away.
 
I'm taking a leave of absence from work.  My full time job is to eat food like a pot head at a pizza shop, and put on some weight.  I felt guilty that I was taking time off, but now is the time to fatten up and get ready for a hard winter.

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October 7th, 2010

removal of PEG tube

posted by NannaJulie on 3:35 pm

I have 2 more radiation therapies...... and one more chemo.... next week...   
My Radiation Doctor I think said normal recover  time up to removal of PEG tube would be 6 months to a year..... does this sound right?   Of course this depends on if the cancer is gone.......   he said up to 2 years for 10 % of patients.... ugh that sounds like a long time......  I'm bringing donuts to Radiation my last day...... of course I can't have one.... but, feel like a little celebration is in order.... :))))
 
Julie
 

by Lion1949 on Oct 18, 2010 at 1:58 pm

Julie
I finished radiation in March of 2010 and had the PEG removed Mid June 2010.  I was careful of what I ate and had little appetite, To this date I stay away from breads, cookies, crackers, cakes, rice.  They all take the little moisture (saliva) I have out of my mouth.
Glenn

by sshay0100 on Oct 19, 2010 at 8:04 am

I'm sure they'll appreciate the donuts.  Dunkin Donuts, Tim Hortons, Honey Dew or absolute sin: Krispee Kreme?  Puts a smile on everyone's face.  I like watching people eat, smelling food and asking people what something tastes like.  When I was radiated the first time the two foods that first "came back" were mayonnaise and cantaloupe.  They tasted like I remembered them.  I would put mayonnaise on everything: mayonnaise on cantaloupe too.  There was a different reality of food: certain foods tasted different - I didn't like apples anymore, but thank God chocolate still tasted like chocolate.  Don't worry about what foods will taste like - you'll find your favorites and enduge yourself!  Eat some extra chocolate if it makes you happy - you deserve it.

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October 6th, 2010

Have You Heard of the Chef with Tongue Cancer?

posted by sshay0100 on 1:09 pm

There's a chef in Chicago named Grant Achatz who was featured in a New Yorker article, A Man of Taste. (http://www.newyorke r.com/reporting/2008/05/12/080512fa_fact_max).  The story behind Mr. Achatz is that he had base of tongue cancer.  He was also a guest judge on an episode of Top Chef.  In the middle of the challenge they threw in a twist: change the dish to a soup.  When the guest judge was revealed, it seemed to make sense: Achatz would need to the moisture in the soup so he could swallow.  During the judging, Achatz looked like he was suffering.  I wrote him an e-mail and Achatz responded.  Can you guess was torturing the poor chef?
 
Achatz responded that all the soups were seasoned with chillies.  After being treated for tongue cancer, this poor man ends up with a mouth full of chillies while on national TV.    Talk about eating fire.  I imagine that he was thinking, "somebody... please call an ambulance."

by NannaJulie on Oct 7, 2010 at 5:11 pm

OUCHHHHHHHHHHHHHHHHHH !!!!!!!!!!!!!!

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October 3rd, 2010

mucasitis

posted by NannaJulie on 3:59 pm

Does anyone know how long the mucasitis takes to start to heal after therapies are done?   I have 6 radiation treatments left and one chemo...... which I think they will hold off until next week  when I'm done with Radiation.... I just developed it in the past few weeks I was talking a bit and swallowing pills okay... now I'm back to just pain pain pain in the mouth......  once I'm done I'm hoping will take several weeks to heal after the chemo and radiations are all done...... Medical Oncologist said about a month..... if I can talk a bit and swallow water and pills again in a month I would be happy..... is this too out of the question?  Does anyone know who's all done with therapy? 
Julie :/ :\ :| :(  I really want to be a little :) again !!!!!!!!!!
 

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September 30th, 2010

Just Diagnosed

posted by debrajjennings on 8:37 am

Wow - what a surprize.  Never smoked and rarely drink and here I am with Squamous Cell CA of the Base of the Tongue.  Healthy as can be 55 year old mother of three, eat right, career (director of a medical imaging center) yet balanced, best time in my life right now and I think I do most all the right things for my health - only other issue is a 7 year post Thyroid cancer (papillary) clean bill of health and a paralyzed vocal cord.  There is no way to know the WHY - I hope to just move on with a plan and then "get 'ur done."  Only had the biopsy yesterday but the frozen section was pretty conclusive.  Also PET/CT last week lite up like a Christmas tree light - 2 cm. lesion with 11.6 SUV.  So even before the biopsy I knew it was a possibility - though I was hoping for some other really rare thing (ectopic thryoid tissue or thryoid cancer spread, MALT lympoma, inflammatory process).  So here we are - just like Michael Douglas.  Not as public - but here we are.  I feel so greatful that no lymph nodes showed "hot" on my PET/CT.   I have support and donated to Livestrong and this is the first place I looked for support. I do not know what lies ahead yet for my specific case - going to ENT Tuesday for final path report and also to radiation oncologists, oncologist and such soon.  I will go back to this site to learn from you and hopefull get some support as I start this journey.  Debra

by sshay0100 on Sep 30, 2010 at 2:23 pm

I agree Debra: it is a surprise, but it sounds like you have a very healthy lifestyle which is extra helpful for your response to treatment and recovery.   This is your second occurrence of cancer - me too.  I thought I got past the first rough patch and WHAM! - Right?  I think the second time is mentally tough, like I can't trust my own body.  
 
What are your feelings?  You can be scared or angry, disappointed or depressed and that's OK.   I'd rather hear the honest truth than the lucky-go-happy facade that good folks feel they need to project.
 
I have base of tongue cancer and it's not a quiet, painless, gentle cancer.  It's all the opposite.  It's painful to eat, swallow, speak, hard to sleep, I don't want to be around people because the things we do to socialize: drinking, eating and talking are now painful and awkward. 
 
A conversation with me sounds like my mouth is taped shut, and because I work with kind people, they make the excuses: THEIR hearing is bad, THEIR cell phone has terrible reception (God bless them all - and thank God for e-mail and texting).  I need my work - not so much for the money or insurance, I need it to keep my mind on track.  I told my boss that all the misery at work makes my cancer seem like a holiday.  
 
It's also scary.  What about disfigurement?  I've heard all the platitudes: it's better to be ugly than dead, and your wife will still love you.  It's scary.  Could it really be possible that I could be any more ugly than I am now??
 
There's no doubt about it.  It's OK to be scared and angry.  I've heard that a mature response to a grim news is humor and helping others.  Who came up with that one?   Is that someone who will come to my house, mow my lawn and tell me jokes?  Oh- well, without a mouth you can't tell too many jokes, so maybe they can put on a puppet show instead. 
 
Humor is the face I put on in public - the face I need to show my wife, daughter and my coworkers.  At night when the pain is  sky-rocketing through my throat and my head is pulsing.   There's nothing else in my life to distract me and PAIN has my full attention. 
 
That's the worse part.  I leave the room, go downstairs - take a dosage of painkiller that is higher than I know is good for me, and I wait for the sensation of narcotic peacefulness, and when I wake up, I feel like a hangover.  My face feels like the underside of a waffle-maker.  The bottom of my eyes are glued to my cheeks and I hurry down-stairs for some relief.  Enough relief that I hope will clear out the pain so I can get a smile on my face, get dressed and be brave.
 
That's my truth.  Those are my feelings.  And your feelings matter too!!
 

by debrajjennings on Sep 30, 2010 at 5:32 pm

Scared shitless ....

by sshay0100 on Oct 1, 2010 at 7:18 am

 
Scared is fine!!
I'm scared and you're NOT ALONE.
What's on your mind?  A lot right?
 
Please, don't worry about trying to be brave here.   All the brave and fearless people are not reading this.  All the brave people are out mowing their lawns, raking leaves, snapping off clever jokes and projecting positive energy.  So maybe us scared folks can feel inspired.
 
Friday, thank God.  No meetings today.  I made it through another week.  For the next three hours I can talk and people will be able to understand most of what I say.  It gets worse in the day, and after lunch, I'm texting and e-mailing - no more calls, no meetings, no visits.  My coworkers and my boss know what the routine is.  I don't do much chit-chat next to the water cooler any more and my boss, who is only two doors down, will get an e-mail of my project status rather than a face-to-face visit.   
 
This weekend we'll have soccer games with my daughter.  When she scores a goal, I can clap my hands, but I don't lend my vocal support.  I hear all the parents - loud and clear, "Conner! Get in front of the ball"!    "Tyler!"  "Hurry Ashley!"  At the end of the game, I'll tell her quietly, "you did a great job, I saw that goal you made..."  We'll walk home together.
 
This weekend my wife will have friends over.  I am told that I don't need to interact.  Of course though, it would be rude for me to hide in my room, or walk past them without talking.  They are friends, but speech is awkward and draining.  They are all concerned at how well I'm doing.  So my wife will tell them the same thing, "Steve is still having trouble speaking and eating, but he's staying busy on home-improvement projects."  I'll keep myself busy on a project in the yard, or the garage - just long enough and dirty enough that I can avoid the visit and excuse my dirty appearance, "Sorry, I can't hang around, but great to see you!"
 
I'll also make dinner for our friends, a very elaborate dinner, which requires me to stay in the kitchen.  Cutting, cleaning, setting the table, carefully plating the dishes, a four-star, beautiful dinner.  I won't eat though, and I won't join them at the table until after they finish.  I'll puree my food and swallow it quietly over the sink.  Trying not to choke.  Then I will ask if anyone would like a cup of tea or coffee.  I'll gulp down some painkillers while the tea is brewing and sit down with our guests for a few minutes, while the painkillers seem to allow me to sip tea and chat.
 
Everyone will say the dinner was delicious, we will thank them for coming.  My wife will hold my hand as I sip my tea.  She'll look at me with her noble brown eyes that say, "you are my brave husband - I love you."
 
I'm not brave.  Far from it.
I'm scared shitless too!!

by debrajjennings on Oct 1, 2010 at 7:58 am

I lost my voice for a year once before with my paralyzed vocal cord after my thyroidectomy....I too clapped loudly at my youngest daughter's soccer games.  Silent on the sidelines.  I could not be understood and my words were interupted with uncontrollable releases of air.  It hurt to talk.  People would treat me the same way they treat my middle child - a mentally retarded daughter.  It was eye opening.  Even at family gatherings with those that you would think would understand - they carried on conversations as if I was not there.  I had someone leave a voice mail message on my voice mail at work that said to please e-mail me (yes thank god for the e-mail and texting).... I had some issues with eating and drinking - but I could hold over the effected side of my voice box and get food down, but I am sure this will be 100 times harder. 
The pain was really not there with my previous cancer..... and I am more afraid on how the pain will effect me with my loveones and my job.  Will I be able to get through it?  Will they treat me the same?  Will my kids and boyfriend be so overcome with worry and fear and sadness that they will be consumed in this cancer thing?  I have 60 people that report to me - I have only been in this postition for 5 months.  I have been affliated with the same medical group for over 23 years - but in this role only 5 months.  They have already offered me salary continuation so I am not worried about the money - but I am worried about the changes that need to be made at work.  I am afraid that I will not have the strength to see them through - let alone communicate them effectively.  I am afraid that my Board of Directors will wonder if they recently hired someone that cannot be in it for the long haul. 
I guess I am off too.  Why me - I never smoked ever.  I hate smoking and go out of my way to stay away from smokers.  I love to cook as it sounds like you do.  And that is ironic .... sadly ironic.  I am still having a hrad time eating because of the biopsies yet I made a lovely meal for the family last night and I sat with them and ate some yougurt.  So it is only 2 days for me of eating these soft things.... and that is only post biospy. I have not even had one radiation treatment yet.  It is hard to image this for a year or so - as that is what I have heard here.  It takes a long time after treatment to be able to eat. 
Did you have a feeding tube?  I am fearful of that too.  I want to try to eat.  Yet it sounds like most people end up with a feeding tube?
Well off to work - while I can
 

by sshay0100 on Oct 4, 2010 at 3:18 pm

I smoked when I was in college, and we didn't care back then because we didn't have wives, kids, bills and if anyone said it was bad, made it all seem worth trying.  I remember finding a lump at the side of my neck while I was in my senior year of college. 
 
My first cancer was the friendly variety.  No pain (other than treatment), no hassle, I got treated, walked out, gave up smoking and got on with life.  When I pass by folks having a smoke, I still like the smell - it smells like my reckless youth - haha!  Maybe I didn't eat enough fiber, or I ate too much fat, or I lived in the city, but I got cancer again, and I can't blame anything.  Now that I think about it, I wish I ate even more fat.  I could use it now.
 
I had a feeding tube during treatment during my second treatment for cancer.  I thought that it would bypass some of the nausea.  I remember my first tube feeding, and I patiently emptied a couple cans of liquid nastiness into my tube, and just as I was capping off my tube, I vomited my breakfast right out.  There was no back-flow preventer in my gut so out it came.
 
I never used it again, and I was tempted to just pull the thing out myself.  It's like having a body piercing - not much of a fashion statement, huh?  My swallowing has gotten worse lately and the concern is that food might be going into my lungs.  The swallow therapist recommended getting a new tube.  I also have a list of stretching and strength building exercises.  Today my tongue will be doing a few push-ups, maybe even a little jog.
 
My speech has gotten so bad, I sit next to my spokesman who will translate for me at my meetings.  My wife, who can read my mind, can't tell what I'm saying.  I find myself trying to pick my words so I can get my message across with a minimal amount of embarrassment.  My meetings are fast and I like to think that we get everything covered, but we don't hang around and talk about last night's game or what we're doing on the weekend.  I try to still tell everyone that they're doing a great job and share any good news.  "Good job" sounds like "gul hob."  And I smile, pat folks on the back, "tag car."  (Take care)
 
After my meeting I hurry to write up the meeting minutes and get it out.  I send co-workers e-mails to make calls for me with the note, "your voice sounds better than mine."  They know what I mean. 
 
When I used to have dreams of food, I would be eating a pizza - my face smothered in all sorts of greasy fat.  I would wake up an tell my wife, "oh, I had the best dream honey...."
 
 

by MarenMeg on Oct 5, 2010 at 6:48 am

Debra, I am so sorry that you have joined this rare group of head and neck cancer patients and more specifically base of tongue.  My husband is 64, NEVER smoked, drinks only occasionally, very active, very fit, in shape, and admired for his communication skills both the written and spoken word.  We were in Florida when he had his persistent sore throat, took antibiotics which didn't work, went to an ENT specialist who scoped his throat and found the mass.  On March 4th, he had a biopsy which proved he had a 2cm squamous cell carcinoma tumor at the very back left side of his tongue.  We were shocked!!  We decided to start our own blog to let everyone know about our "new normal" journey.  Our first entry was March 23rd.  You don't have to join anything and can read about our ups and downs, trials and tribulations, and so on.  It has helped others so I hope it helps you and your family.  As we have been told, the diagnosis sucks, treatment is horrible (get a PEG feeding tube--a must), but the prognosis is good.  Here is the blog address:  http://www.gordytaylor2010.blogspot.com     Good luck....Diane

by debrajjennings on Oct 7, 2010 at 7:41 am

Diane
This is great - thank you so much for the link.  Funny how journaling has turned into blogging - it is journaling but with sharing of experiences, strengths and hopes. 
Debra

by Lion1949 on Oct 18, 2010 at 2:08 pm

Debra
I could not agree more that a PEG is a must. You will need less pain meds and life will be that much better. Besides, when the PEG is removed it looks like you have to belly buttons.

I am 61 and I like many others never smoked or drank much and was totally shocked when I learned I had this cancer.
During treatment, I lost my voice, and had what I call readiation burns on my neck that were not pleasant, but with the meds they gave me you would never know it today.
Glenn

by debrajjennings on Oct 19, 2010 at 7:42 am

Glenn -

So glad to hear that you are doing better. I start 7 weeks of radiation tomorrow. I am extrememley happy that I have no chemo - Stage 1. They will radiate my neck even though I have no lymphn node involvement as a precaution.

I am OK with the idea of a PEG and not afraid of the procedure at all. I just do not want to rely on a feeding tube and possibly loose the ability to swallow. So I agreed to the PEG at a later date if I loose too much weight. We have been experimenting with lots of juicing and smoothies -and have been able to add lots of nutrients, protein and calories into each one. So I am keeping my fingers crossed. My oncologist said I am determined, but I am also going to not be stupid.

Thanks
Debra

by sshay0100 on Oct 19, 2010 at 8:35 am

Hi Debra,  
 
We'll you made it through your first week of radiation.  It sounds like you're trying to pack in some extra calories now which will really help out later.  I have a little hand mixer, Cuisinart CSB-76 Smart Stick Hand Blender, it cost about 40$ and you can buy one at Amazon.com or Bed Bath and Beyond.   
 
One of my favorite treats is mixing ripe banana, heaping tablespoon of creamy peanut butter, half cup of whole milk, scoop of whey protein and a couple tablespoons of sugar and blending it together.  It's about 500 calories and tastes better than Ensure.  I'll also throw in some vitamins - which dissolves in the hand blender.   
 
Some other treats are blended cheesecakes, banana cream pies, custard pies, chocolate cream pies and pumpkin pies.  Later in the radiation, you'll loose your taste, and get more sensitive to acids: something like a strawberry will feel agonizing, but the creamy feeling of peanut butter or custards on your throat will be soothing.   
 
Hope you're well, Steve    

Edited by sshay0100, on October 19th, 2010 at 8:40 am.

by debrajjennings on Oct 26, 2010 at 7:27 am

Steve Well they postponed the start of my radiation for a few days - the planning took longer because of all my dental work artifact (due to car accident at age 17).  So now I have completed 4 treatements, 31 more to go.  I am surprized that I can already "feel" it.... some dry mouth, but the actual tumor hurts a bit.  I think a good thing.  It is like "he"is very sensitive to the radiation.  Named tumor "Adolph".  A little anxious about getting everything I need to do for year end at work, but it will all work out.  Experimenting with lots of smoothies and fresh made juices.  Yes, banana, cashew butter, chocolate soy milk, protein powder and some honey is one of my favorites right now.  But we make fresh vege and fruit juices that we add to the smoothies..... So far, aok.  I agreed to PEG if I loose 10 pounds in two weeks.... but so far I gained a pound.  Take care \Debra

Edited by debrajjennings, on October 26th, 2010 at 7:39 am.

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September 23rd, 2010

Sore Tongue

posted by NannaJulie on 4:16 pm

WOW, just a question for maybe some who would know this from experience...... does ANYONE know how long after Radiation ends... does the sore tongue start to heal..... ?

by Lion1949 on Oct 18, 2010 at 1:52 pm

I ended Radiation March 2010, it took a good 8 weeks after before I got off of pain patches.  to this date my tongue is sensitive but hey sure is better than what it was.
Glenn

Post a reply

September 22nd, 2010

Caregivers questions

posted by georgiawife on 4:26 am

My husband was diagnosed with Stage IV base of tongue cancer with metastisis (sp?) to several lymph nodes on both sides of neck on April 13.  One lymph node being especially large.  He's gone through the induction phase of cisplatin, three doses @ 3 week intervals; then an additional 7 rounds of chemo; followed by 35 doses of radiation. He fought getting PEG, but thank God he did!!  Radical neck dissection is scheduled in a couple of weeks.  I would like to know what to expect!?!

by mokpo on Sep 23, 2010 at 5:10 pm

Hi Georgiawife. My name is Ruth and I had the exact same question as you when I first posted on May 13th.  My husband had a left modified radical neck dissection and a microscopic laryngoscopy biopsy on May 25 and he came home from the hospital on May 27. I was so surprised by how good the incision looked right afterward, no swelling, etc. He had a Jackson Pratt Drain - a drainage tube inserted at the incision site (under the skin)and the tube exited  through the chest area. I had to empty the bulb twice a day, measure the fluid and keep a record of it. It's easy to do once you get the hang of it. (Buy surgical gloves for this.) I did this for about one week until we saw the doctor for the post op when they removed the tube. My husband had seven lymph nodes removed, one being very large. I asked my husband what the worst part of the experience was and he said it was just being in the hosptial. He was nauseated from the surgery but they gave him meds for that and his throat hurt from the biopsy. He even asked me to stay with him through the night just in case he needed help. We could do this because they gave him a private room. So, just in case you have the same situation it might be a good idea to bring a few toiletries for yourself, too.  They used stitches for the incision and most dissolved on their own. We had to wait one week for the pathology report and they gave us the results during the post op visit.  My husband continued to use the PEG, 5 or 6 cans per day, until about two or three weeks post surgery. The ENT insisted that he cut back to one can a day and start on food by mouth. As soon as my husband started eating and swallowing, the thick saliva went away. I hope our experience helps to shed some light on what you might expect. If you have questions please don't hesitate to ask. Good luck!

Edited by mokpo, on September 23rd, 2010 at 5:33 pm.

by georgiawife on Sep 25, 2010 at 5:04 am

Thanks so much Ruth!  I really appreciate your response.  Are yall dealing with Stage IV?   It's been difficult to find people who have been through the same cancer, the same stage and the same treatment protocol to know exactly what to expect.  He's not eating anything and hasn't for probably 2 months.  He is continuing to lose weight even though he is taking product in through PEG.  He wants so badly to get rid of it - but everything tastes horrible - so I'm not sure when that will happen!   Were any muscles cut during the procedure?   Was his speech affected?  I am prepared for the drainage tubes - at least I know to expect them - actually doing it will be another story :)    Hope your husband continues to improve and that all cancer is gone!

by mokpo on Sep 25, 2010 at 2:21 pm

Hi Georgiawife. Thank you. My husband had stage 4 BOT, too. His treatment consisted of Cisplatin, Taxotere, and 5-FU. (The 5 FU he took home in a pump that lasted four days each time.) His chemo was every 21 days. He had four treatments. About two weeks after the chemo began, he started receiving radiation that lasted for 7 weeks or 35 treatments. My husband stopped eating four weeks after the chemo started and didn't resume eating until a few weeks after surgery although he could eat frozen fruit bars. Try the Dreyer's pomegranate flavor. The PEG saved his life. His taste buds gradually started working and now he's eating many things. I'm not sure if muscles were cut during the surgery but he has no feeling on the left side of his neck now. His speech was never affected. You'll do fine with the drainage tube. The nurse will show you what to do in the hosptial.  My husband is doing very well however his recent PET scan revealed  "new activity" that wasn't in the first scan. The doctor said it could be another lymph node compensating for the ones removed but we won't know until the next scan at the end of November. Thanks for the well wishes and good luck!  If you have more questions don't hesitate to ask.

by georgiawife on Sep 27, 2010 at 7:55 am

Hi: Sounds like we are going through the exact same battle!  The chemo  sounds exactly the same, except they added 7 more chemo rounds - only for an hour once a week - instead of the dreaded pump!  He continues to have issues with the PEG - leaking from around the PEG itself - some blood, etc.  My concerns are brushed off - but it doesn't seem right!  How long ago was the surgery? 

by mokpo on Sep 27, 2010 at 5:51 pm

Hi. The surgery was May 25. My husband didn't have issues with the tube but sometimes there was leakage from around the site but not blood. It was a goopy beige color (like the color of the formula.) but it wasn't much.  If you have concerns I would certainly have them addressed.  My husband started feeling better about two weeks after the surgery. He felt the worst after the treatments were over. (His last treatment was on March 19.) So, there is a light at the end of the tunnel. He still can't eat bread and somethings still don't taste normal but he can eat a steak now but it takes a long time :)  My husband started eating salmon first because it's very easy to eat. So, don't give up hope!

Post a reply

September 16th, 2010

Kevin, no feeding tube?????

posted by NannaJulie on 6:43 am

Wow Kevin, I would truley say that is pretty stubborn.... I got my tube about 3 weeks before any treatments started.... I couldn't talk and couldn't even swallow pills anymore.... even the tiny ones....  The biggest problem I had with my Spouse and I kept trying to communicate it was  how hard it was to speak.... he kept talking ending a sentence with "you know what I mean?" etc.... endings that made you feel as though you really needed to respond.... I found this SO frustrating.... I have 3 weeks and one day of Radation left and ONE Chemo treatment left, I am pretty nervous about what the tests will show when I'm all done....  Since the treatments started I can now talk a lot better.... so that frustration has for now subsided a bit.  I am halfway through radiation.... they keep telling me I'll be back on all the pain pills etc before the end of the radiation.... the mouth is starting to feel the effects from the radiation... sore spots, I had a bout of Thrush that was painful. After today I'll be more than halfway done with the radiation..... I hope they are wrong about the pain getting as bad or worse than it was before the treatments begin... 
I am curious as to after your radiation treatment ended.... how long did it take for the soreness from the radiation to start to heal? I don't know if they plan on doing any surgery if any of the tumor is still there after treatment or not... I know the CT and PET scan showed two lymph nodes were involved although they couldn't phsycially palpate them.  I'll have to ask about the HPV... they did freeze a section just to check for that, but I haven't heard about that from anyone.. It was the Chemo doctor who picked up on that note from the biopsy pathology report... I have to start asking more questions....
For anyone else who had a feeding tube... did they put you OUT when they inserted it?  They didn't with me, but I thought it was because my throat was so swollen and sore they didn't want to intubate for me the short surgery.  The tube came out a few weeks ago, and they had to put it back in again, AGAIN with no anesthesia... halfway thru a shot of lidocaine in the area... which numbed it and helped... but I was shaking so bad when I got off the table I was angry they didn't tell me they weren't going to at least give me something to ease the pain more.  I'm not trying to scare anyone out of having a feeding tube, if it came out again I'd go back into get it fixed.... I don't know if it was my insurance that wouldn't pay for anethesia for it or just the doctor's opinion at the time.... I know it won't hurt when I get it removed... they will deflate the balloon in there and just slip it out.... or if I need it replaced.... but I'm thinking next step after healing a bit from the radiation is getting it removed.... I know I'll have to start eating first.... etc., which I still cannot do.
If anyone has any personal experiences with these particular things would appreciate hearing about your experience.. :)))   Thanks guys.... hang in there :)))) It's SO encouraging to talk to people who have or are going through this :)))
Julie
 
 
 

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September 15th, 2010

No doctor but willing to help.

posted by kstover1 on 9:33 am

Tomorrow marks one full year since my last treatment for stage 4 base of tongue/lymph node cancer. I’m cancer free and healing up nicely. I had a total of 16 weeks of chemo and 7 weeks of radiation. Due to my epiglottis getting cooked, by the radiation, I am still on a liquid diet. My stubbornness got me through this mess without a feeding tube. I’m not here to talk about myself, I’d like to offer to answer any questions that some of you may have about the process or what to expect from the treatments. My doctors did not give us much info on what this ordeal would be like. I have up an to date excel spreadsheet with all of my medical visit info, 76 visits in 09 and 22 YTD for 2010. Total cost to date (ins paid lions share) $112,141.31. I also have a spreadsheet that calculates my smoothies nutritional content, protein, calories, carbs, fat, fiber etc. I'm willing to share these if anyone is interested.
A few words of advise for those going through, or just starting the process. See a nutritionist, make sure your getting as much nourishment as you can possibly stand. There are lot better ways to get nourishment than Boost or Ensure. You can not get too much, I’m still consuming about 3600 calories a day and not gaining any weight. Spouses/family I believe that making sure that the patient is well nourished is the best thing that you can do to help. I also believe that this process is harder on the spouse/family than it is on the patient, my dear sweet wife was/is stressed over this a lot more than I am. I’d advise the patients to be open about their thoughts feelings with their spouse/family, this is something that I failed at. If I was more open with my wife, instead of just being the tough guy, it would have helped her through all of this. Keith Stover kstover@austin.rr.com  

by djbobsgirl on Sep 15, 2010 at 1:17 pm

Thanks Keith. You are saying that your caloric needs have greatly increased...is that right? If so , I guess we are experiencing the same. How ironic that just when you don't feel like eating and it hurts to eat, you need to eat more. Bob has only lost a couple pounds so far, but he is eating much more often than ever. Like every 2-3 hours. And we're loading him up with calories at each feding. We could hardly believe that he still lost some weight. I guess it's the cancer nd  thechemo and all that increases demands. We will ask you questions as time  goes by.
   The first 3 week dose od Chemo made Bob temporarily...a little insane. We didn't expect that to be so bad. Ringing in the ears, body felt real heavy, extreme fatigue but unable to sleep long periodsfrequent urination,etc. Did you or anyone have those or similar symptoms?They say the radiation hasn't even done its damage yet...can'y wait.  

by NannaJulie on Sep 16, 2010 at 3:14 am

BobsWife:
Wow, I just had my second Chemo dose of 3 on Tuesday of this week.  That night my blood sugar went thru the roof it hit 412 has NEVER been that high... I am diabetic controlled by meds... but hadn't taken the meds that day as a week earlier the Doctor prescribede some Flucanizole for Thrush and that lowers bloood sugar and was having some pretty serious blood sugar crashes.... Upon talking with the nurse the next day at Radiation she went thru the chart of what they put in my Chemo Cocktail..... and one of the medications was a high dose of a steroid.... and THAT really spiked my Blood Sugar, especially as I skipped meds that morning.
Frequent urination can be a sign of High Blood Sugar, not sure if Bob has  ever had problems with high  blood sugar or not....  That is something you may want to look into.... with your nurses or doctors...
I am really glad and relieved I found out the reason for the spike, but frequent urination for Bob after Chemo is what made me think of it....
Let me know if this helps.... !!!
Julie :)
 
 
 
 

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September 15th, 2010

NOT djbobsgirl anymore

posted by djbobsgirl on 6:28 am

Welcome Julie from Minnesota!  Your story sounds a lot like all of ours.  First let me tell you and everyone why I am not bobs girl anymore...Well we got married yesterday!!!! On day 10 of radiation between chmo session 1 and 2, we did it. It just seemed right since Bob was feeling so good compared the the week after Chemo. We have spent the last two weeks finalizing this decision and the timing of it, got the license and the rings, then since he was having such a good week we just decided to grab a few people and JUST DO IT.
     Our doctors have never given us a stageof his cancer.. I'm assuming it is at least 3 since the first symptom was a swollen lymph node. HPV + which they say has  a better cure rate. The radiation is starting to make his swallowing difficult, but so far he is eating a lot! Now that the marriage is official and completed we are planning a celebration and honeymoon at  Disney world when treatment is all done and he is feeling better. It is really helpful for us to have some goal to focus on in thefuture. Something very positive. It balances out any bad news. So maybe you can do the same and plan a special outing with a grandchild or something. It's working for us.
    We are back to reality, as this morning Bob's back at radiation (morning after marriage)and I am getting back to work. But we have our beautiful rings to remind us of the love in life which is more important than any cancer diagnosis. I never really got it before, but cancer can make you appreciate life and what is important..... Good luck to you.   djbobswife

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September 13th, 2010

Hi, I'm NEW here

posted by NannaJulie on 7:37 am

Your stories all sound a lot like mine, my daughter is just amazing, she found this blog site and emailed it to me last night.... (while I slept:)))  I have been looking for some kind of site, but haven't had any luck.  I am Female and 51.... I was diagnosed July 19th with a biopsy after month of doctoring for this "sore throat" that was driving me crazy.... and twice to an ENT..  My cancer is stage 4, the doctor told my daughter not to panic when she heard that... he said it was labeled that mostly because it was so very aggressive....   my treatment is 3 total chemo therapies and 35 radiation therapies.  Today I am going for my 15th radiation therapy and tomorrow will be my 2nd Chemotherapy.  I am so greatful I have experienced no nausea yet... and still have my hair.  Although yesterday when I took a bath I saw a larger than normal amount of hair in the bathtub.... so my luck may be running out on that one.  Since the first Chemo and the start of radiation most of the SEVERE pain I experienced to begin with is gone.... my mouth and tongue are now sore from the radiation.... I had thrush last week and that was rather painful. I am very hopeful... but, still I'm scared.  My Third Granchild was born on June 22, I had the pain, but didn't know it was cancer yet.... everyone says how brave I am.... I don't feel I'm brave at all...... God didn't give me a choice and ask me if I wanted this :(  I guess we just do the best we can, one day at a time.  I really want to join a group I connect with and share with.  Sometimes I get so scared and have no one to talk to or to ask if this or that is normal or what it means etc.  Like last week my daughter came with to meet my Radiation Oncologist.... he told her as long as my pain now is from Radiation not the Cancer that is a very good sign!!!!!   How do I know the difference?  I know the pain was must worse I was a walking Narcotic Pharmacy to start with... I've had my stomach PEG in before I started therapy.  And therapy was very delayed by the fact that the dentist felt I had a bone infection and removed all of the teeth on my left side.... so treatment began a month after the biopsy which I felt was tooo late.... I am scared, I feel too young, I don't know what the success rate is exactly I hear different numbers. I want to see my Grandchildren grow a bit, especialloy the newborn one..... but feel glad I got to see them all born.  Just wanted to say hi to everyone and hope to post and update here often..... and hope to posting here a LONG TIME!!!!  And make some new friends :))))  I will figure out how to set a profile picture, and post pictures... I have a good one of my first week or so of treatment holding my grandsons... is a   

Nice to Meet you All  Julie from Minnesota :))))

 
 
 
 
 
 
 

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August 31st, 2010

Day one of treatment

posted by djbobsgirl on 2:36 pm

Today we had our first day of treatment....after many weeks of testing, biopsies, surgeons, ENT's , scan etc. We were getting ready , paralelling all the kids' first day of school. We had a week at the beach until Sunday, now we are "ready for battle". He tolerated being clamped to the table for radiation with his mask far better than I ever would...at least it was just minutes. Then we saw the Oncologist, blood work etc then finally..CHEMO. We struggled the last couple weeks debating wheather to be in a clinical trial or two, but decided on the old standby...Cysplatin. He feels great today had a big lunch and wants to go out to dinner tonight. We got all the meds to prevent nausea, side effects etc. They say it will stsrt to hit him this week end. He is the eternal optimist, but being a nurse plus knowing someone who went through this I know what he's in for....so do all of you. We are prepared for the worst, yet hoping for the best. All that really matters is a cure.
  Preparing for the worst includes the dentist , the flouride trays, sampling and ordering Boost, Ensure etc., buying an electric shaver, and getting back up for the DJ jobs and help with his day job lined up. 
    The best news is we have decided to get married!!!! Last night he went to my 90 year old Dad to ask for his blessing..TOO SWEET. We were planning on it, but this dose of reality has sped up our plans.So we will get married soon and plan for a nice honeymoon trip in several months when this is behind us.... Like I said planning for the worst, but hoping for the best.      Wish us Luck. and the same to all of you !!!

by mokpo on Aug 31, 2010 at 9:56 pm

Congratulations on your engagement! Your fiance is fortunate to have you  with him as you both go through this journey together. We just want to  give you both encouragement and hope.  We were where you are now a little over seven months ago. My husband is now back to work and he is doing very well. His hair even grew back curly! He calls it his cocker spaniel look.  Yes, there are still foods he has difficulty eating but the thick saliva problem that really bothered him went entirely away about three weeks after surgery. So don't give up hope! You will make it through this.  Good luck and we will be following your progress. If you have any questions please don't hesitate to ask. (My husband is also of Northern European descent and has struggled with squamish and basil cell skin cancer for over 42 years.)  Take care and again congratulations!

by djbobsgirl on Sep 1, 2010 at 12:35 pm

To mokpo,  Thank you for the encouragement.  Bob and I have been through many trying times since we met in Italy over 5 yrs. ago. This is just one more trial, but we do very well getting each other through things together.
     They say the coming weekend is when he'll start feeling the effects of the big dose of chemo and the cumulative effect of radiation. We're waiting for it....kind of weird...........
   In the meantime we keep plugging away with our daily life one day at a time. We have a lot to look forward to, as well. Going to look at wedding bands this week.   Love helps a lot!!!!

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August 24th, 2010

Chemo treatment side effects – Passing Out, Neuropathy, and Hearing Loss??

posted by wifeofandy on 1:45 pm

For my husband’s story, see Cece’s blog of July 8, 2010 (I replied on July 13th – wifeofandy).

 

My husband has passed out and fallen at least 6 times with some pretty serious injuries. The problem is that he doesn’t have any warning so never gets his hands out in front to protect himself. Right after his 3 months of chemo was over, he was to have 3 weeks with no treatment, feeling good and some time to enjoy himself before starting radiation – he fell and broke his jaw and spent most of the 3 weeks in the hospital even having to post-pone his radiation a week!

 

About a month after radiation, now off PEG, off all meds, no longer nauseous and planning a month of boating and golfing, Andy fell injuring his knee and has to be in a brace for 6 weeks – I think he’s more upset about this injury than the cancer. He was REALLY counting the days to when he could feel normal and have some fun – very depressing for him.

 

ALSO, we thought he was in the clear because he didn’t have any of the really long-lasting life-changing side effects we’d heard about during the treatment. We didn’t know that they could still show up AFTER the treatment was over. He is now experiencing neuropathy (tingling) in both feet and legs and some in his hands AND he has pretty severe permanent HEARING LOSS!! We had never heard of that one but I’ve read up on it and it appears to be very common with high doses of radiation and the platinum chemos (cisplatin & carboplatin). So beware, I guess. There are some drugs that may be available to prevent this loss of hearing but it doesn’t seem that there is anything proven as of today. Something to check into if you're facing this treatment.

 

Treatment for this type of hearing loss - all I've found so far is hearing aids - anybody no of any corrective surgeries? Please let me know.

Meanwhile, Andy got word that his "cancer is gone" a little over 2 weeks ago for which we are very thankful.

 

by MarenMeg on Aug 26, 2010 at 5:22 pm

Thanks for all of your info.  My husband completed his last radiation/chemo treatment on June 10th.  He is still experiencing a tingling or lack of feeling in his feet.  He did not lose his hair--just a little.  The treatment is horrendous, isn't it?  I appreciate your posting.

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August 22nd, 2010

Wive\'s Club

posted by SUZSHE on 1:17 pm

Browsing "tongue base cancer" today, I came to this blog and notice that it is usually the wives who are asking the questions and sharing the specifics of this difficult and very personal experience. My husband completed radiation and chemotherapy (yes, cisplatin) on July 15 at Mayo Clinic in Rochester. His was an especially difficult treatment because the squamous cell tongue base tumor diagnosed in May is actually his second incidence of head and neck cancer, with the first having occured 20 years ago (different pathology--adenocarcinoma, so the tongue tumor is a completely new type of cancer) and for which he received high dose radiation following resection of the parotid gland which was the site of the original tumor. He has lived a relatively normal life since the first treatment, with his major complaint being dry mouth and slight swallowing difficulty.  Diagnosis of the tongue base tumor was a 6 month process and followed misdiagnosis of his complaints of ear pain, severe shooting facial pain, and sore throat. He was diagnosed as having cranial nerve neuralgia (trigeminal, glossopharyngial etc) and was treated incorreclty with high dose neurontin and tegretol and in fact had brain surgery (microvascular decompression) in an attempt to relieve the pain. Of course, the pain was not relieved because the diagnosis was incorrect and the brain surgery unnecessary. Doctors at Mayo made the correct diagnosis when we went there for yet another opinion about the debilitating facial pain. It is interesting to note that the usual imaging tests (MRI/CT) failed to reveal the very large tongue base tumor. I am told tongue tumors look like tongue tissue on MRI. Only PET scan can confirm the diagnosis, which is usually made just by feeling the back of the tongue. In my husband's case, many many doctors failed to perform this simple and inexpensive exam: just feel the back of the tongue.  By the time the correct diagnosis was made, the tumor was so large that we were faced with the difficult choice of near total glossectomy to remove 3/4 of his tongue or a difficult course of radiation and chemo due to the high risk of damage from his receiving a second round of high dose radiation 20 years after an initial radiation treatment. He elected radiation/chemo largely because of the exceptional experience and track record of Mayo radiation oncologist, Dr. Robert Foote. Treatment was twice a day radiation for 7 1/2 weeks and adjuvant chemo. Treatment has ended and he is dealing with the same problems that most of you report: PEG tube feedings, 30 pound weight loss, recovering from radiation burns etc. In his case, the pain inflicted by the treatment has actually been less than the pain caused by the tumor before treatment began. Here are my words of encouragement: you can recover from radiation (my husband had 20 great years after the first treatment and is making slow, but good progress the second time around), you can live well after treatment even if you have some residual problems, you should NEVER stop looking for a correct diagnosis if you feel throat, ear or facial pain, and you should know that while rare, there are other patients who have this disease who have never smoked or abused alcohol, and finally: ask your ENT or GP to feel your tongue if you have symptoms. Early diagnosis is key. Good luck to all. You aren't alone.

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August 19th, 2010

Seekiing information

posted by HOPE820 on 9:59 am

My husband was told yesterday, he had a BOT--this is after several months of treatment for feeling like a lump in throat and difficulty swallowing at times and over 20 pound weight loss. We were told over and over it was SInus and had a CT scan that showed whole head of "infection"  and were on regime of 3 weeks of antibiotic then 3 weeks --he now has finished 5 regimes of antibiotics.  At the doctor's  a lump was discovered yesterday and he will have a frozen section and base tongue resection on Tuesday--he is of the thought he will go back to work in just cpl of days as MD said we caught it early and will remove it and "that wll be that"...He has also had ear pain despite the antibiotics. The MD is an ENT. NOTHING has been said about chemo, radiation. difficulty swallowing, eating etc.
I was looking for site about food etc post surgery and found this with all the problems with mucus, eating etc and was just trying to bet feedback.
Thank you and for sure wish the best for all and their families.

by MarenMeg on Aug 22, 2010 at 7:18 am

My husband did not have surgery to remove anything.  He had a tumor at the base of his tongue--diagnosed on March 4th.  He has a feeding tube which has been a life saver.  Mucus is a problem and at one point he could not eat anything by mouth.  7 weeks of radiation (5 times per week) and 5 chemos--one per week.  The treatment is very painful but hopefully it will all work.  Look at our blog of our "new normal" lives with this diagnosis.  He never smoked one cigarette in his life and is not an alcoholic.  Go figure.  You don't have to join anything--just click on it.   BTW, the first entry was in March entitled "A Bump in the Road."  I hope this sheds some light on what we've been through.
www.gordytaylor2010.blogspot.com

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August 10th, 2010

Another one

posted by djbobsgirl on 6:04 pm

My boyfriend(well, manfriend) is just being diagnosed. He is having  the final biopsies to reconfirm the primary site as BOT, and I guess do the staging and all. We are already scheduled  to meet with Onc. and Rad. @ Hilman Cancer Ctr. at Univ. of Pitt. He is another non-smoker, has had no alcohol in 23 yrs. and is 56 and of Northern Italian descent. Very healthy all his life until he noiced a swollen gland in the R neck a couple mo. ago. Now we begin this frightening journey together. I am a nurse and know what is coming down the road. I am trying to prepare for the worst and hope to be surprized that it may not happen. Glad this website is here for us.     djbobsgirl

by MarenMeg on Aug 12, 2010 at 2:17 pm

At least you are a nurse!!!  All of us caregivers out here become instant nurses with this journey.  Our doctors never sugar-coated anything about the treatment but the prognosis is encouraging.  I have posted our blog on here before but if you'd like to read some of it, here it is
http://www.gordytaylor2010.blogspot.com
Our first post was at the end of March entitled "A Bump in the Road." 
We have had some scary moments.  He finished 7 weeks of concurrent radiation and chemo on June 10th.  Now he is in a very slow recovery process.  Take a look at the blog--don't have to join anything just read.
Good luck to you and your manfriend.

by SUZSHE on Aug 22, 2010 at 4:31 pm

MarenMeg: I read your husband's blog and found his story to be so familiar. My husband is 65 (birthday during treatment in July), is tall and was in excellent physical condition prior to diagnosis, began treatment weighing 185 (having lost 10 pounds between symptom onset in January and diagnosis in May) and weighs 155 today. Looking at a photo of your husband, I am struck that they could be cousins. Other comments on this blog about northern European ancestry are very interesting. My husand is of German/Scotish heritage. I have done a lot of research and have heard about the HPV  (human papiloma virus) theory. My husband's case is thought to be related to Xray treatments he received for acne as a teenager combined with the radiation he received 20 years ago for adenocarcinoma of the parotid. He has never used tobacco and has a beer about once a month. My husband is impatient with his progress of recuperation; I read some exerpts from your husband's blog to him today so that he can see that others are experiencing the same impatience. Tim has a PEG tube, but is able to consume about 3,500 calories per day of "food" and he is also able to use bolus feeding (with syringes) to allow him not be be tethered to the IV pole/gravity bag mechanism. He is not yet able to eat anything other than the canned formula because of swallowing problems. I have encouraged him to email your husband. It helps to know you aren't the only one having these "issues."

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August 8th, 2010

Headaches and Heritage?

posted by MarenMeg on 6:23 am

My husband was diagnosed with BOT on March 4, 2010.  He completed 7 weeks of both radiation (35 blasts) and 5 chemos (Cisplatin).  He could not take any more chemo because he not only developed an overall infection and mouth sores, but he was severely nauseous even with all of the wonderful drugs.  June 10th was his final treatment.  Now he is in his 8th week of recovery.  Still has PEG--takes in 7 cans of product per day.  He is eating more things.  He takes a 40 minute walk each morning.  Off of all painkiller meds as of 2 weeks ago:  lorezapan, morphine patch, phenergan suppositories, and liquid vicidin.  PET scan is scheduled for August 25th.  Salivary glands coming back very slowly as well as a few taste buds.  No appetite.  Maintains his weight which is only 165--started off at 180 and dipped to 154 at one time.  Question for all of you super survivors and caregivers--have any of you experienced headaches during recovery?  If he stands too quickly his head can really pound and he fainted one time from getting out of bed too quickly.  There is no special time when he gets these headaches but they are almost a daily experience.  Of course, we worry anytime he gets a pain anywhere!!  Any comments or advice would be terrific.
Also, currently we know 6 men (ages range from 50 to 65) who have had BOT, tonsillar, or throat cancer.  All men are caucasian, did not smoke, are not alcoholics.  But they are all northern Europeans in descent.  All the men look like they could be cousins.  Any similiarities out there?

by Leeena on Aug 8, 2010 at 2:36 pm

HI-I just had to post. My husband's ordeal is very similar.  He was diagnosed with BOT SCC Stage 3 in March and completed 35 rads and 7 chemo (cisplatin and erbitux) on June 10th also.  Still has the Peg-taking 6 cans of Compleat daily and I'm adding protein powder and V*8 fusion juice for added calories.  His weight is also like your husband's; he's hoverinig around 165.  He also takes about a 40 minute walk each morning and is off the pain meds.  He is having an awful time with thick mucous right now and a very sore throat and tongue, so he is not eating or drinking.  My husband just turned 54 this week, not a smoker, but he was HPV+.  His doctors advised not to have a scan until September-there is a possibility of getting a false reading if done too soon. Keep in touch, it would be helpful to compare notes.

Edited by Leeena, on August 08th, 2010 at 2:38 pm.

by MarenMeg on Aug 10, 2010 at 6:29 am

Thanks for the reply.  I hate that our husbands are a part of this rare form of cancer "fraternity."  He is scheduled for his first scan in late August because our oncologist is leaving the practice.  I believe he wants to get the results before leaving the country.  Yes, we have heard about false positives.  He used to have a lot of mucous but not as much now.  No sore throat or tongue but feels like the back of his tongue is swollen so that eating makes him feel like it can't go down.  I'm not sure what HPV+ means--could you explain?

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July 23rd, 2010

Pet Scan came back negative

posted by jebob on 9:52 am

Just wanted to share that the first pet scan (six months after surgery) came back negative.   I share this in hopes that it will encourage you.   We have a long way to go but people are beating this!

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July 20th, 2010

New to the website--recently diagnosed--still seemed surreal until the peg tuber and the mediport!

posted by gr8mnesia on 11:48 am

60 year old male with cT2N2M0 Stage IV A moderately differentiated squamous cell carcinoma base of tongue. Started as a right neck abcess in 08' and CT showed second branchial cleft cyst which was resected and path showed benign but severe dysplasia. Neg CT/neg adenapathy one year later. Had EGD in January of 2010 for Barret's Esophagitis surveilance and found mass at the base of the tongue. Had it excised 2 days later and biopsy came back benign with severe dysplasia. 6 week check up things healing well. 6 month check, lesion returned. Wider excision and further biopsies--still called benign with severe dysplasia. All biopsies sent to Mayo Clinic--their review indicated invasive moderately differentiated squamous cell carcinoma with the original neck biopsie in 08' a metastatic node from what was then an occult primary in the neck. Have since had pet scan/ mediport/ peg tube and am starting 7 weeks of radiation IMPT( 35 treatments M-F for 7 weeks) with concurrent cisplatin chemo therapy once aweek for up to 7 weeks if toxicities don't prevent. Have had 2 days of radiation and one chemo so far. Have talked to one other patient who endured this treatment 3 years ago and nobody has sugar coated the process. So that is where I am at now.

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July 18th, 2010

6 Months After BOT surgery. 2 Months post Chemo/Radiation

posted by jebob on 11:29 am

My husband was diagnosed  with BOT cancer which metasticized in lymph nodes 12/16/09.  He had surgery to remove the cancer on the base of his tongue as well as removal  of all lymph nodes around his neck which had cancer on both sides.   He also completed six weeks of  chemo/radiation.   After surgery, he worked with a speech therapist to gain back his ability to swallow.   He started eating soft, solid food in April and things went well until his third week of radiation.   He reverted back to his feeding tube (inserted after surgery) until two weeks after radiation.   In June, he stopped using the tube (it will be removed soon since he can maintain his weight).   He supplements his meals with Ensure Plus.   He also had quadruple bypass ten years ago so I have to keep him on a heart healthy diet that has a lot of calories - no easy task.   Lots of pasta, but also chicken, fish, steak, chops in healthy sauces.   The biggest problem now is neck tightness and dry mouth.   He is taking Evoxac for dry mouth but it takes a while to help.   The tightness in his neck is most uncomfortable for him especially at night.   Has anyone found anything for it?   Also, how long before it lets up?

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July 8th, 2010

My Dad recently diagnosed

posted by Cece_moore on 6:44 pm

 My father who is 61 years old was diagnosed with BOT cancer about a week ago.  There have been non stop doctors visits since then.  He has had mutiple scans and imaging and they beleve the cancer in contaned to a 3mm tumor at the base of his tongue which is cause his lymph nodes to cluster and swell.  His oncologist says surgery isn't an option and has decided to treat him with 7 weeks of daily radiation, and chemo treatments 3 times through the course of his radiation treatments.  They have already inserted a feeding tube for when he inevitable can't eat or swallow.  He is scheduled to start his treatment plan soon, but his oncologist sent him to see a dentist first since the saliva/mucus gets so thick in his mouth during treatment that it can cause tooth decay and thus infections in the gums and jaw.  The dentist says they want to remove 4 of his molars before they even start treatment!  They won't start chemo until the dentist ok's it.  Has anyone else fighting this type of cancer had to have their teeth removed?  I guess i can understand the risk of infection is very serious, but is it necessary to preemptively take out his teeth. This whole whirlwind of events has been so hard, he already has a feeding tube and now they want to pull him teeth and chemo and radiation hasn't even started yet!  I am completley worried and scared, any advice you can give me would help.

by wifeofandy on Jul 13, 2010 at 1:38 pm

 
Hi Cece
My husband just turned 60 and was diagnosed with BOT, Stage IV in January (he had one involved lymphnode – 2-3 cm, I think). He is being treated at Mass General Hospital in Boston, MA. Because of his “young” age and general good health and good shape, they offered him an induction chemotherapy which lasted 3 months – he had 3 chemo infusions, one every 21 days – each infusion lasted 5 days. THEN, after 3 weeks of recuperation, they started the 7 weeks of daily chemo/radiation.
 
He was urged to see his dentist to make sure all needed dental work was done before beginning any of his treatment however there was no recommendation to remove his teeth. My husband had trays made for his teeth, which he used for daily fluoride treatments (he did this religiously and his teeth are fine).
 
I have heard that some people have had to have ALL their teeth removed. One wife whose husband had all his teeth removed, said, “do not let them do it.” I’d have a hard time with it! I heard that if you don’t remove teeth at risk before the treatment and have to have them removed afterward, you risk breaking your jaw??? I did not hear this from a doctor, so I would find out why they are recommending it and what would happen if you don’t remove them.
 
The 3 months of induction chemotherapy is not a proven therapy to cure BOT but the idea is to kill any cancer that may have spread that is undetectable. It was also felt that any risk of postponing the radiation therapy would be offset by this additional treatment. My husband pretty much threw up for 3 months. It was grueling and made for a very long treatment, however, once you involve a lymphnode, I believe the cancer has spread and at 59 years old, we didn’t want to take any chances. After the 3 months, his tumor was completely gone, however, not the cancer – this was considered extremely successful since some patients show no improvement in their tumor and most show some reduction so we were thrilled.
 
He was also offered to participate in a trial therapy, which he opted to do. The only difference in the trial was that he would receive panatumamab (sp?) – an additional chemo during the standard radiation/chemo treatment. Panatumamab has the potential to target just the cancer cells – it is proven with other types of cancers but not BOT, however, it is believed that it should in theory work.
 
My husband is 6’4” and generally weighs 210 lbs. He “only” lost 10 lbs. during the first 3 months of chemo, which was great. He is now done with the radiation therapy as of June 8th and is just starting to feel better. He really has had a terrible time with nausea. His weight is now hovering around 180 but he never lost his ability to swallow and has managed constantly drink and eat, even if it was just soup or pudding throughout the entire radiation treatment. His neck got very red/raw but never really bled and with regular treatments of Domeboro and Aquafor his neck was healed within 3 weeks after radiation stopped (we did this treatment at least once a day and sometimes 3 times a day).
 
All I can say is, you have one shot at this – I recommend doing everything possible and be religious about caring for your neck, your mouth, your teeth, your nutrition and HYDRATION. My husband did have serious hydration problems so we were really on top of it. Also, the anti-nausea drugs are essential, make sure your pain his managed (THERE SHOULD BE NO PAIN) and take all the Lorzepam they offer you. My husband took two before every radiation treatment so he wouldn’t care about it – you don’t feel anything but it can cause a lot of anxiety.
 
Sorry for the long story but we have gone through it all and just recently. If you have any questions, feel free to call me at 978-664-1787 or email me at lambiep@comcast.net.

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June 28th, 2010

Personal Blog Website for BOT Cancer Journey

posted by MarenMeg on 9:59 am

My husband, 64, was diagnosed with BOT cancer on March 4, 2010.  He is in the recovery stage after completing 7 weeks of radiation and 5 chemos concurrently on June 10th.  We started a blog on March 23rd so that we could document what was happening for us and for others.  It is "our story" but we feel so many others who are going through this and the caregivers who are a part of this process may possibly benefit from our postings.  The first entry is entitled "A Bump in the Road" and gives a brief schedule on how we found out about this rare cancer.  I read one of the recent postings to this site asking if this is as bad as the doctors indicate or are they just not wanting to give false hope.  My answer is that it is a painful journey but that the prognosis is usually good, at least that is what 3 specialists have told us.  People don't have join anything.  Just click on the link and I hope our experiences help in some way for others sharing the same news.  www.gordytaylor2010.blogspot.com

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June 22nd, 2010

Supporting my husband ...

posted by JojoZwife on 10:14 pm

Well, since we found out about his diagnosis with BOT, 4/23/10, we have had two opinions ... one at SWMedical Dallas and MD Anderson in Houston.  We know that he has a window of six weeks before we have to redo scans.  While at MD Anderson, I found comfort in the supportive team of surgeons, pathologists, dentist, and radiologist.  Now that we have made a decision to see a doctor recommended to us by the radiologist at MDA, who consequently use to be a fellow at MDA, we feel as though we'll get the same care knowing this doctor's previous association with MDA.  My concern is not having the other supportive team members to help us along the way.  Will we have the other team members assigned to us by the doctor?  I just want my husband to get the best care available.  If any of you were in my shoes would you do further research on their backgrounds even though they come highly recommended by this doctor?  We already have our surgeon at SWMedical Dallas.  I felt so much confidence in MDA, it's difficult to know we're now on our own.  I'm also wondering if any others of you who have been through the treatment for BOT experienced the degree of side effects we continue to hear about to the degree that we've heard.  Or, is it practice to give worst case scenario if in the event, rather than giving false hope to patients?  I'm hoping the chemo will melt the tumor down so the radiation will be minimal as well as the side effects.  Have any of you experienced this situation?  Thank you for your support. 

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June 22nd, 2010

Hi :) New Survivor

posted by Wchapp on 3:46 pm

I've been lurking this blog for several months and thought it was time i came out of the closet.
I was diagnosed with BOT (1 cm ) and a 2 cm left neck lymph node metasis in Jan of this year. Started comination chemo/rad treatment first week of Feb.
My treatment was different from any I have read about here.  I had IMRT twice a day morning and afternoon along with chemo on the first day of the week and a pump of fu-5 that lasted a week.  After one week of treatment i had a week off.  Then I did a repeat of the first week.  The net was a week on treatment and then a week off treatment for 10 weeks.  Total was 50 rad, 5 cisplatin. and 5 weeks of fu-5.  Ironically the weeks off were the worse and just asbout the time i started to feel ok it was back to oncology center.
I had a port put in, but no feeding tube.  Infusing liquids and foods were a and I lost 40 lbs over the course of treatment.
My last trament was mid April.  I had ct and pet scans the last week of may and the were all negative,, nada,, zilch.  they were good enough that they cancelled the planned resection on my left neck.
I have questions about recovery time.  I still cant eat anything but soup and sometime noodles and mashed potatoes.  Taste buds have just started to come back ( i can drink sweet ice tea that actually tastes like ice tea), but for the most part any thing i try to eat still tastes terrible.  I am maintaining my weight but i cant gain any till i can get back to eating.  I also have all the various mouth / saliva/ dry mouth / mucus etc issues that most of you have described.
I have noticed that you all seem to talk about Ensure.  I was a solid ensure user from about 3 weeks into treatment and still use it today,  I found Nestles ( carnation ) VHC instant breakfast.  For the same volume (250 ml) as ensure you get 560 calories compared to 350 from ensure plus.  What i did was mix an ensure dark chocolate with the instant breakfast twice a day which got me close to the 2000 calories / day my docs wanted me on.  This week I'm kicking it to 3 times a day which gives me 2700 calories and should get me a few new pounds.
I'm dreaming of the day I can sink into a good prime rib or some baby backs.  I'm wondering how long it took you to recover eating capabilities and how the progression went.

by jebob on Jul 23, 2010 at 6:56 pm

Hi wchapp,
I finished treatment 5/21/10 and my tastebuds are coming back helter/skelter.   Fruit still doesn't taste like fruit but sweet potatoes starting to taste like sweet potatoes and meat like meat.   My meals have to be very wet, i.e., I mix my steak/chicken with my mashed potatoes and a lot of onion gravy.   Bread is still hard but Subway flatbread goes down ok.  Keep going back to foods and experimenting because changes are weekly if not daily.

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June 16th, 2010

Continue Support for Jojo

posted by Brother-of-Jojo on 11:40 am

I will be going to Houston with my brother to hear the findings from his biopsy. MD Anderson Hospital offers a treatment called Proton Beam... We will be finding out if he is a good candidate for this procedure. Decisions will be made after whether he is to be treated there or stay in Dallas (where he lives) And go to Southwestern. Any thoughts out there? I do know MD Anderson in Houston offer that particular treatment and SW does not. If he does not qualify for the Proton Beam treament and will undergo traditional treatment is the move to Houston viable? Also, anyone out there familiar with this Proton Beam treatment? Thank you.

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June 2nd, 2010

Follow up treatment

posted by maxsmart on 1:17 pm

My husband finished his treatments in February and had a clear PET scan in April.  Today he was told they are scheduling another scan.  Just wondering how often scans are scheduled after treatments.  I know it is important to keep ahead of things because of recurrence but six to eight weeks between scans seems a little much.  Is this normal?

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May 25th, 2010

What to do part 3

posted by Brother-of-Jojo on 4:38 pm

Sorry. Additional thoughts go through my head as soon a I hit "post"
It seems as I read other posts on this site, I notice the ages...  FYI, my brother is 48 and doesn't smoke or drink. Are the others who fall into this range?
just curious.

by lmarsa on May 25, 2010 at 7:11 pm

 
I'm not a medical doctor.  But UT Southwestern is an excellent facility and your brother will get state of the art care.  Make sure they give him speech pathology sessions each week to maintain his ability to swallow.  But time is of the essence.  IMHO I don't think you need a second opinion.  Yes, MD Anderson is the best.  But UT Southwestern is a superb hospital, too, and he's lucky to have such a good hospital close by.  I'd move ahead as quickly as possible.  I

by Brother-of-Jojo on Jun 16, 2010 at 11:18 am

Edited by Brother-of-Jojo, on June 16th, 2010 at 11:39 am.

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May 25th, 2010

What to do part 2

posted by Brother-of-Jojo on 4:19 pm

I know this is a Survivor's blog, so who better to ask advice. Thank in advance for any thoughts.

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May 25th, 2010

What to do...

posted by Brother-of-Jojo on 4:14 pm

My brother just found out he has BOT. I'm getting more details from my sister, but from the sound of it it seem serious. According to Dr. it is stage 4.As I write this he is getting consultation on the type of procedures they will be planning to do. Timing seems to be crucial, but should we get a second opinion in regards to the type of treatment. Especially from a hospital/cancer treatment center that is more specialized. Presently he is at Southwestern Medical Center in Dallas Texas. According to my online research, University of Texas, M.D. Anderson Cancer Center is in Houston and is regarded as # 1 or at least top 10 Hospitals in research and treatment of cancer.  My sister believes it is a risk to wait. The cancer at this time is isolated and has not spread into other ares yet. My brother is a chiropractor and my sister is a head nurse, I in the other hand am a designer - far from being any expert in the medical arena.
What to do...?

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May 13th, 2010

New Memeber

posted by mokpo on 10:48 pm

Hello. I just found this site.  Thank you to everyone who has posted. My husband is 62 and was diagnosed with BOT cancer on December 21 . It had spread to the lymph nodes on one side of the neck (stage 4.) This is how the cancer was found. The PET scan showed it did not spread outside the neck area. He was treated very aggressively with Chemo (Cisplatin,Taxotere, and 5-FU every 21 days) for four treatments along with 7 weeks of radiation (35 treatments.)  Treatments finished 8 weeks ago. Surgery (left modified radical neck dissection) plus another biopsy on the tongue is scheduled in twelve days.  I was curious about the surgery and what to expect. I noticed that one survivor spent five days in the hospital.  My husband had a PEG tube inserted on January 13, the same week as his first chemo treatment. He didn't start using the liguid diet until Feb. 12, and it has been a life-saver. He even gained a few pounds! My husband has a problem with too much thick saliva making it impossible to eat and hard to swallow.  Hopefully this will improve with time. The ENT wants him to try to eat and swallow. My husband is not a smoker.  He stopped working in January and has been able to stay home to rest. Thank you again.

by sshay0100 on May 17, 2010 at 4:52 pm

I'm dealing with thick saliva too.  I'm 18 months out of treatment and I use a hand bender to grind my food up.  I'm still working so it's a struggle to maintain my weight and remind myself to eat.  It's good to hear that he's taking time off. 

by mokpo on May 19, 2010 at 5:02 pm

Thank you for your reply.  It is good know my husband is not alone in dealing with the thick saliva and to know it may last for awhile. I hope things improve for you soon and that you can gain weight, too. Take care.

Edited by mokpo, on May 22nd, 2010 at 7:12 pm.

by Fourdays on May 24, 2010 at 4:47 am

The thick saliva does get better over time. I am 14 months after right neck dissection surgery and the effects of the radiation/chemo treatments is improving - I had basically the same treatment as your husband , although I had the radiation boost (brachytherapy). I started eating within 30 days after surgery and was thrilled when I was able to have my PEG removed. I lost 40 lbs during the peg and have gained back 25 lbs - no problem eating and my taste buds are are back but more sensitive to spicy foods. Dry mouth is the biggest challenge especially at night when sleeping - a humidifer helps.
The brachytherapy complicated  the surgery because a trach was necessary and the catheters inserted around the tumor site was an additional surgical procedure at the same time of dissection. I was released in 5 days and the scaring is barely noticible. The side effects in my case are minimal, besides the dry mouth there is tightness and some residual numbness in the neck area.
Good Luck....
 

by mokpo on May 27, 2010 at 8:35 pm

Thank you for your reply. My husband was encouraged after I read your post to him. He had surgery on Tuesday, the 25th, and he is home today! So, he only spent two days in the hospital.  Everything went well and his neck looks so good. I was expecting to see a lot of swelling but there is none.  There is grenade-like bulb connected to a tube inserted in his chest to drain the fluids but that will be removed on Tuesday. The doctor didn't see the tumor at the BOT during the re-biopsy, so that sounds good but we won't get the pathology results until tomorrow or next Tues.  I'll have to read more about the brachytherapy you had done. Your surgery sounded much more complicated but it is encouraging to hear that you are doing so well. Thanks again and I'll keep reminding my husband that he WILL get better! Take care.

by mokpo on Jun 1, 2010 at 5:16 pm

Hi. I just wanted to do an update on my husband's pathology report from his surgery last week.  We had wonderful news today. All seven lymph nodes and the biopsy of the tongue came out clear. We are very grateful. Thank you for all your support.

by hilaryp118 on Jun 2, 2010 at 12:15 pm

 What great news for you guys!  Some helpful hints I've read for thick saliva were for saline nose drops and tussin/mucinex. My dad will be starting radiation in approx. 2 weeks so I'm not sure if they will help or not. Best of luck to you and your husband!

by mokpo on Jun 2, 2010 at 10:50 pm

hilaryp118 thanks for your advice and well wishes. We'll ask the doctors about the mucinex when we see them in two weeks.  I was reading that your dad starts chemo on Monday. Make sure he takes the pills they prescribe for nausea. They really helped my husband. Also, when the time comes when he needs a cream for his neck during radiation the best kind that was given to us as a free sample was called Xclair cream for radiation dermatitis symptom relief. It's manufactured in Italy but distributed by ALIGN in New Jersey. It actually healed the skin on my husband's neck in just a few days after it started to crack.  It was amazing and it wasn't greasy. The web site says: www.alignpharma.com. We never needed to use the prescription and so I don't know what the cost would be at the pharmacy.  It's always important to ask the doctor what creams are alright to use during treatment. They'll probably give you something to use for the dry skin.  Is the surgery planned after treatment? I wasn't sure if you said he was having it before or after. Good luck on Monday and if I can be of any help please ask.

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May 13th, 2010

New Member Intro - Entering Round Two

posted by butchsdaughter on 8:58 am

Hi everyone.  I am really happy to have found this group. There is not much information out there about this cancer in comparison to other conditions, which can certainly be frustrating.
My father, 68, has recently been diagnosed with BOT cancer...for the SECOND time. He was NED for over 10 years, but in the last month he was experiencing some pain while eating, went to his doc, and, well, you can guess the rest. It turns out he has a stage three tumor a few inches away from the original location, but per his PET scan, it has not metastisized yet - the good news. Like many folks on here, he has residual damage from his first, very intensive set of treatments, which included chemo, surgery that removed a majority of lymphs in his neck on both sides, radiation seed implants, and external radiation treatments.  Dry throat, taste bud issues, swallowing challenges on occasion, and mucus issues when he has even a minor cold.
All that said, my father is an amazing guy, who has had a renewed outlook on life since his first bout with this disease.  He follows his passions, owning a Corvette (the original he gave up when I was born!) and heading out to AZ for racecar driving lessons.  He now has two grandchildren he adores (my kids, 5 and 2) and is nowhere near ready to NOT see them grow up.  He is a fighter and ready for battle.
They are recommending chemo and radiation to avoid surgery and removal of a signifcant part of his tongue - using the CyberKnife in treatment - to attack this, but have encouraged us to go for a second opinion as his docs have not had the direct experience with a case like his with those treatments in combination.  We are in that process now.
I am wondering if anyone on here has gone through a second battery of treatments for this condition, how it has been handled, and what challenges you've faced based on any residual damage that we may need to think about.  (I am sorry but haven't had time to review everyone's posts!)
I hope this is an appropriate post for this forum (albeit lengthy), and I would appreciate any insight anyone may have - we're going for double-survivor status here!

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May 11th, 2010

BOT diagnosis/questions about lymph node inolvement/metastases

posted by lmarsa on 4:03 pm

My husband was just diagnosed with BOT today.  So far, the ENT thinks it is stage 2.  We are meeting with the radiation oncologist on Thursday.  Surgery is not recommended because of where the tumor is--apparently, it could impair his ability of swallow and outcomes are about the same for surgery and raidation plus chemo.  Here is my question.  We had an MRI done a couple of weeks ago--which is when we discovered he had a mass.  It did not show any metastases.  However, do we need a PET scan for a definitive diagnosis?  Although the tumor is relatively small--less than 4 cm.--I am still concerned about metastases or lymph node involvement, which would dramatically change his prognosis.  Does anyone have experience/insights?  Obviously, we're still reeling but want to be as informed as possible.  Also, the ENT said this type of cancer was prone to metastases and metastacizes in 60% of cases.  Here again, any insights/experiences?  THANKS!

by butchsdaughter on May 13, 2010 at 9:49 am

My father actually had radiation implants in his tongue - although this was 12 years ago - very similarly, they could only remove so much.  His did metastisize into the lymphs, and they removed a significant portion on both sides. Mind you, his tumor was larger, stage 3. Treatments have improved since then, so hopefully your husband's swallowing won't be as impacted as much.
My understanding is that a PET is the most thorough means of identifying if it has spread.
I hope the oncologist meeting went well today.

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May 10th, 2010

Surgery done!

posted by fmgags on 7:40 am

Well I had my surgery done this past tuesday and i was released on saturday. Doctor tells me that they removed 100% of the tumor in the tongue and did not have to cut as much as originally thought. 2 cuts and they got it all. Also did find some in the right lymph nodes as well which were removed.The top of the chain was positive for cancer and the towards the bottom was negative. Need to heal up get radiation and was told might have to do chemo as well. So far everything sounds good. Getting the staples removed from both sides of the neck sometime within the week.

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May 9th, 2010

Basaloid Squamous Cell??

posted by hilaryp118 on 4:10 pm

 We found out that my dad's base of tongue cancer is basaloid squamous cell stage IV.  Has anyone else been diagnosed with this type?  Any pt. accounts with treatment type and outcomes would be greatly appreciated!  

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May 9th, 2010

Alcohol Dependency during treatment

posted by cheilRN on 2:48 pm

My husband is an alcoholic  with BOT cancer and had surgery May 3 to remove lymph nodes on both sides of the neck. He also needed to have his left carotid artery cleaned out at the same time. He will be receiving chemoradiation as well.  My husband had cut back on drinking to 4-6 beers daily. I insisted that he not be put through alcohol withdrawal while in the hospital for fear that it could causes problems with his carotid surgery and/or increase his hospital stay. Alcohol withdrawal can be a very serious complication, patients can require hospitalization for weeks.  As long as the Dr's have an accurate understanding of your father's alcohol dependency /consumption, they should be able to guide you. Alcohol can be given down a feeding tube, possibly weaning his consumption down over time.  I would not recommend any abrupt discontinuation of alcohol at this time.  Good luck!!

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May 3rd, 2010

Alcohol and treatments

posted by dam816 on 4:58 pm

My 78-year old father was diagnosed with base of tongue cancer that has spread to the bilateral lymph nodes. The PET scan does not indicate the cancer has spread anywhere else.  We are getting ready to undergo treatments (radiation with lchemo) in two weeks. He is naturally very upset and worried about the treatment and recovery. I have had to move him to my home (he lives alone and is too far away for me to help).  The problem is that he is drinking very heavily (he was always a drinker but this has set him over the edge).  I am trying to get him to cut back but to no avail. I am very concerned what will happen with the treatments - his doctors have told him to cut back (they realize he cannot quit all together).  Does anyone have any advice (no, he will not consider AA or anything similar) or has anyone else helped an alcoholic through this treatment? I have told him that it will be very difficult if he does not start slowing down.

by MarenMeg on May 6, 2010 at 6:38 pm

First, you are to be commended for having your dad move in with you during treatment.  It would be impossible for him to do this alone.  My 64-year old husband--very healthy, never smoked, and active--was diagnosed with BOT while we were staying in Florida over the winter.  We enjoy wine with our meals and when in Florida a margarita or two!   One of the lymph nodes has been affected also. 
In a way, I wouldn't be too worried about his alcohol consumption because when he starts both radiation and chemo,he will NOT want to drink or eat anything.  At first, my husband would eat soup and Ensure and Boost but now he gets all of his nourishment from a feeding tube called a PEG.  This is a lifesaver.  This is how he "eats" now.  For the next 2 weeks, he'll probably drink more than usual but when he starts treatment, my bet is that he won't want to drink anything! 
My husband has radiation Monday through Friday for 7 weeks total.  On Fridays, he also has chemo--cisplatin. 
Hope this helps you.  Good luck!

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May 1st, 2010

New Base of Tongue Diagnosis

posted by golferman on 7:46 am

I was just diagnosed with Base of Tongue Cancer this past Monday. As you all know, it is a big shock. I'm trying to read and understand as much as I can, but the amount of material out there is mind boggling. My daughter found this chat room and I think it could be just what I need at this time to add to what the doctors will do for me.
I'd like to tell you my story and then ask a question. My situation only started about three weeks ago with a sore throuat for 4 or 5 days. When the sore throat didn't seem to go away, I did something that the doctors are still amazed about. I stuck my finger down my throat to see if I could feel where the soreness was coming from. To my shock, I discovered a lump on the top and side of the base of my tongue. I immediately went to an ENT doctor and the biopsy showed that it was malignant. I had a Pet Scan yesterday. The Cat Scan that was done 10 days ago did not show any movement into the nodes. I don't know about the Pet Scan yet. At this point, I am a T2 N0. They said I was able to catch it early.
At this point, they do not think I am a good candidate for surgery. They feel that radiation and chemotherapy are the best options.
My first big question has to do with where I should go for the radiation treatment. At this point, I was directed by my ENT to a local Radiation center that is 10 minutes from my house. Because I live in the Tampa Bay area, I have the Moffitt Cancer Hospital just 45 minutes away. I have a consultation meeting with them later this week and am leaning toward going there even though it will mean more traveling. My question: Is it important to select a GREAT raditation place or are they all doing the same work?
 

by lmarsa on May 4, 2010 at 3:08 pm

Hi: My husband was diagnosed this a.m. We are still reeling. And of course, I'm on the Internet trying to find out more information. I am a medial journalist. Writing about new medical advances is what I do for a living. In answer to your question, your doctor can make the difference between life and death. GO to Moffitt as fast as you can. RUN!!! You're lucky to have a world class facility near you. We are near UCLA, thank goodness. They will save your life. Our local ENT did not diagnose my husband. The doc at UCLA--who my husband insisted on seeing--saw immediately what was wrong. We'd still be messing around with antibiotics if we had stuck with the local guy. "nuff said.

by MarenMeg on May 6, 2010 at 6:47 pm

My husband was diagnosed with BOT cancer while we were in Florida over the winter.  Now he begins his 3rd week of treatment tomorrow.  He concurrently has radiation five days a week and then on Fridays, he has chemo also.  He will be having this for 7 weeks. 
Now that you are diagnosed, the big thing is to get a very reputable and respected radiaologist and oncologist at a top notch facility.  Go to the Moffitt Cancer Hospital!!!  Even though it is 45 minutes away, it would be worth it to you.  We travel 55 minutes five days a week and are very comfortable with our decision that we are getting the best treatment.
An ENT specialistat Northwestern Hospital in Chicago urged us to get a very good center for the radiation/chemo.  This is very important.  You will probably have IMRT for radiation and wear a mask.  No surgery for my husband also.
Also,by the time my husband began treatment, one of the lymph nodes had cancer invade it but don't get too concerned about this--there are a lot blood vessels in the throat area.  At first my husband was a T2 NO. 
Good luck!

by golferman on May 11, 2010 at 11:59 am

To Imarsa and MarenMeg:
Thanks so much for your comments and help. I have made my decision to go with the Moffitt Cancer Center in Tampa, FL. They seem like wonderful and very professional people. I am now in the planning stages and am scheduled to start my radiation about June 1st.
At this point, I am also T2 N0. Hopefully, I will get started before it moves to any of the lymph nodes.
Best Regards,
Golferman (Larry)

by golferman on May 11, 2010 at 11:59 am

To Imarsa and MarenMeg: Thanks so much for your comments and help. I have made my decision to go with the Moffitt Cancer Center in Tampa, FL. They seem like wonderful and very professional people. I am now in the planning stages and am scheduled to start my radiation about June 1st. At this point, I am also T2 N0. Hopefully, I will get started before it moves to any of the lymph nodes. Best Regards, Golferman (Larry)

Edited by golferman, on May 11th, 2010 at 12:00 pm.

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April 23rd, 2010

bot

posted by daddysbaby on 4:32 pm

Hello I new to this. My dad was diagnoised with BOT almost 4 years ago. It was a hard battle, he still is not working. This type of job he had was to hard for his to go back they ended up laying him off. I actually am in the process of writing a paper for school. My dads cancer made me curious on if there were many group that he could join to talk to people that have gone thru the same things. I have found this site and how im curious to see how other survivers that have had to change their life style and jobs. This would be beneficial to me if any one wants to share their experiences with me. thanks

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April 20th, 2010

One Year Out!

posted by shanefox on 12:15 pm

     I began my BOT treatment in October of 2008 by having all of my teeth removed from incisors back leaving me with six each top and bottom front teeth.  My radiologist told me that there was a high possibility of radiation getting to my jaw bone through a cavity or break in the tooth enamel and that this could cause  necrosis of the jaw bone, a nearly always fatal condition---he, in fact, refused to give me radiation unless I did this. My dentist and I fought a losing battle because my teeth were in excellent condidtion...I'm an actor and had spent lots, and lots of jingwah keeping them in good shape. Getting to this point is a story onto its self with my, for several months, insisting to an Ear, Nose, Throat doctor that something was wrong in my "throat" and that despite his ventures into my throat with tubes up my nasal passages, antibiotics, histamines, and etc, and etc there was soemthing wrong!.  He even performed a biopsy at some point and told me that "it is not cancer"!  After I did all but grab him by the throat and twisting his arm, he referred me to a specialist at Baylor in Dallas (Dr. Oxford)....Bingo!  Jackpot! 
     A deep tissue biopsy told the story! Stage 4, BOT which had not yet metastisized and I was off to the Tyler, TX Cancer Center and Dr. Saunders (radiologist) and Dr. Hyman (oncologist), and two really top nocth back up teams.  Both doctors were Phi Beta Kappa and fellows in their resptive disciplines.  I felt that I had made good choices and had assembled a good team to help me in my fight.  Remember this please, you choose who you want, research them, back ground, training and etc.  For example not every Doc is a fellow in his field or Phi Beta Kappa..each honor is an indicator of an achievement, success driven person..just what you need to conduct a winning fight! As a former Marine, I put myself into full survival mode and focused on winning the fight and staying alive.  But, I was not out to merely "survive", I wanted to thrive.  i didn't have to outhink my docs or second guess them, they were accomplished pros and all I had to do was my thing..FIGHT!
     At the time of my biopsy I was prepped for what was coming with implants of a PEG tube just below my sternum and a Mediport on my upper left chest and slated for forty-seven days of radiation given on five weedays, with a two-day break over the weekend and weekly chmo (cisplatin).  Before radiation I was fitted with my mask...my first reality check, this was not going to be any fun, not at all! The mask is a mesh contraption of malleable metal and plastic which is heated and formed to a skin tight fit from just above the sterum, over the shoulders, face, and head, completely covering all those areas to the back...it is then used to bolt you to the table so that you cannot move while receiving radiation.  It is marked for targetting the radiation doses and there is no room for variance.  Some people have to be tranquilized, but I soldiered through it with only a few really freaky moments when my imagiantion took over and asked me what would happen if there was a fire and the palce evacuated and I was forgotten about...but, I could hear my Sr. Drill Instructor talking me through that burst of panic, took a breath and soldiered on.
     Overall, I lost about sixty pounds, was plagued by almost constant nausea and had negative reactions to every palliative medicine they gave me for pain or nausea.  There was a shot in the stomach procedure which would have acted to preserve my salivary glands but it literally drove me to my knees with nausea and we had to stop it.  Despite all this, the thing I really despised the most was the damned tube feeding--but, it kept me nourished and alive. Upon compeltion of the treatment and a preliminary catscan showing "no activity" the radiologist examined me, palpitated my neck and throat and signed me up for swallowing therapy...when I started, I was still on the feeding tube and highly motivated to have it "yanked" out...little did I know how true that expression was going to be. Swallowing therapy is a process of being hooked to adhesive patches connected to upper and lower areas of the through and being jolted with electrical charges casuing the muscles to flex over and over for an hour three times a week.  When we started, I could not even swallow pudding, but as I'm writing this I am eating Brie on french bread with an occasional sip of water.  I can't eat chicken or most meats and brocoli and rice are just too granular, but I eat fresh salads, sandwiches and almost anyhting I want.  Foods with sauces or gravies work best, but a bite-sip of water-chew and swallow works just fine for almost everything. I started out needing mouth washes and a mouth gel to combat dy mouth as my salivary glans were pretty much history, but now a year out, my salivary glands have recovered quite a bit and only have had a handful of embarrasing restruarant moments (ERMs).  I no longer wake up with dry mouth, but still have a pronouced "wattle" under my chin which bgecomes less pronounced with time and my daily massaging of it to stop scar tissue from knotting up.
     I lifted weights,and still do, to restore the muscle mass that I lost and start each day with a "smoothy" loaded with a scoop of complex carbs and one of whey protein from the health food store, a banana, apple, orange, cup of soy milk, a few table spoons of yogurt, a half cup of frozen fruit and a couple of scoops of fat free frozen yogurt...good stuff and the carbs and protein and weight lifting have had a great effect on rebuilding muscle mass.
     At some point I had the Mediport and PEG removed and when I say it is yanked out, that is precisely what happens..without benefit of anesthesia, and the Mediport is cut out through a small incision and pulled out..pretty much a similar sensation to a flesh wound in the field and digging out the shrapnel. But, all is not wonderful, cancer is a life altering disease and you do not get over it as you do the flu.  I'm seventy but despite the cancer, I look about ten years younger and remain energetic and active; daily blog,  president of the Texas Alliance for Retired Aemricans, and on the Executive Baod and several committees of the national Alliance for Retired Americans, garden, walk and very involved in state and national politics. 
    But, again, all is not wonderful. My thyroid was dinged by the radiation and I have to combat lethagy and fatigue, a fine tremor, forgetfullness, difficulty in focusing.  None are so severe that medication is required, and my last blood panal indicated some recovery of the proper functions of the thyroid. My immune system is still out of whack and contributes (I Think - self diagnosis, since no MD can pinpoint its cause) to severe onsets of hivelike outbreaks which work their way up and down my body for five to six weeks and then mysteriously vanish, only to return in a few weeks or a few months without rhyme or reason.  If you've ever had poison ivey, it is like that only more intense and traveling back and forth and up and down limbs and trunk for weeks at a time. I take some sort of super anti-hystimine and an anti-anxiety med..which help me sleep during outbreaks and which seem to have a slight palliative effect.
     The process of fitting for and breaking in of dentures has been a real hassle, as the scar tissue in my mouth fights back and I think the contours of my gums keep changing so that I am constantly having to get them adjusted.  Like I said, this was a major issue from the start and I continue to hate this part of it above all else. However, these are minor hassles and considering the alternatives, I'm fairly content.  Stuff happens, and I'm essentailly agnostic, but deeply appreciate all the wonderful people who prayed for me..I draw strength from their love and attention.  I was overwhemed to learn how many carring friends I had..I even got a phone call from a grade shool "best freind" who I had not seen in years..his phone call really gave me a lot of strength.  My belief is that whatever "spiritual" process there is, it comes through other humans in day-to-day interaction. My wife  was my primary care-giver, and there are no words to be found that expresses all that she did, all that she went through, and how powerfully she affected my resolve to continue the fight when things were at their bleakest. Both the speciaist and Dallas and my oncologist have put me on a six-month check up schedule..it was every month, then every three months, so at one year out, I'm feeling truly OUT!

by shanefox on Apr 20, 2010 at 12:28 pm

Edited by shanefox, on April 20th, 2010 at 12:29 pm.

by sshay0100 on Jun 21, 2010 at 9:40 am

I had a similar experience with my diagnosis.  I had persistant sore throat and after half a year of fooling around with antibiotics and humidifiers (my house was like a rain-forest); we had a follow-up with my ENT, but he was on vacation and his partner was filling in for him.  It took him two minutes to figure out what was going on.  
It's great to hear that you're back to eating and enjoying food.  It must have been a real shock to get teeth removed, and it's hard to imagine how your life might change.  Thanks for taking the time to share your story.  We all have a lot in common!

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