Base of Tongue Cancer Survivors! Group

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!

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

posted by gr8mnesia on 11:48 am

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?

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.

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

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. 

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 bitch 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.

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.

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?

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.

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.

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...?

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.

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!

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!

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.

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!  

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!!

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.

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?
 

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

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!

PET Scan result

posted by catya88 on 11:05 am

My boyfriend has stage IV BOT. He finished treatment Feb 7 and went for his first PET Scan Monday. It shows two spots on his lungs and cancer of the jaw. Can anyne help with what's next?

Diabetes and BOT Cancer Treatment

posted by jhzimm on 8:00 am

My dad is 64 and diagnosed with BOT  cancer about a month or so ago.  He has started 5 day radiation and  1 day per week chemo last week.  He went ahead and got a port and a PEG tube put in last Friday.  Along with the other side effects, the doctors said the treatments, meds etc. would cause problems with his diabetes.  Just wondering if anyone has had diabetes with this type of cancer, or if you have any good suggestions to help with side effects?!

Ear Pain?

posted by MarenMeg on 5:39 am

My 64-year old very healthy and fit  husband had a persistent sore throat beginning Feb. 1, 2010.  While we were in Florida for 2 months, he went through various dr. apts. culminating with a biopsy performed by an Ear, Nose, and Throat specialist at a hospital.  After 2 1/2 hours, the dr. called me in to say, "in all of my 27 years of medicine, your husband's was the most difficult biopsy I've performed. He has a 1 inch plus malignant tumor on the lower left base of his tongue."  Words that changed our lives forever, right?  PET scan revealed no cancer any where else except the tumor.  Upon returning to IL, he has seen two more specialists and all agree. This Friday, we meet with a well-respected and experienced radiologist and oncologist.  Robotic surgery is not recommended at this time.  He'll probably have 7 weeks of radiation and once a week during that time, he'll have chemo.  Okay, that's the background.  Has anyone experienced ear pain?  Last night it was severe.  He also feels like his head is going to buzz right off because of pain.  It is the left ear which is the same side as the tumor.  He is stage two or T2.  He is trying not to get a feeding tube when this begins; however, he doesn't have any weight to lose.  Any suggestions to put on weight or keep weight on when this begins?  Any suggestions or advice?  Many thanks.

Newly diagnosed BOT cancer and Transoral robotic surgery???

posted by hilaryp118 on 5:49 pm

 Found out today that my dad has base of tongue cancer with lymph node involvement.  My parents are debating whether to do surgery with chemoradiation or not. They saw specialists at Henry Ford Hospital that are doing transoral robotic surgery.  Has anyone gone through this surgery?  They are worried about disfigurement and recovery.  Any accounts with regards to  this would be helpful.  

Scared out of my wits

posted by fmgags on 8:08 am

Hi. Obviously new here. I have just heard that I have a milignate cancer on my tongue. I am 36 yrs old 3 kids and thought I was a strong guy. I was told that chemo wont be neccesary for me as they caught it early and surgury is needed. The waiting game is killing me. I am supposed to get a call today for another appt with another dr and my ct scan is scheduled for friday morning. I am just so scared for my wife and kids.......wow. Been having enough trouble to talk about it and here I am broadcasting on the worst possible media. the internet. One day at a time just trying to stay positive is taking alot out of me.

caregiving friend

posted by rmrjhg on 5:07 pm

Our friend has BoT cancer.He is 60 years old --lives in the hampton roads area of virginia--and was diagnosed 12/09. He receives medical care through the Hampton VA hospital. his radiation is provided by Riverside Hospital radiation and is just the best place possible. He noticed a lump on the side of his jaw--had a CT scan--biopsy--peg tube. He was to have 3 chemos with Cisplatin but suffered kidneys failing after the first and was hopspitalized for three days and can have no more chemo.  He had 9 molars extracted before beginning radiation. He is 6 wks into 8wks of radiation.  He has been constantly dehydrated at least partly due to not getting enough liquids.  He is not eating or drinking much at all or using the tube and will not take the pain meds or use the cream to help the radiation burns.  He is instructed to  use 5 cans a day and does one.  He is still having maybe one to three cigarettes a day. He is needing 2 IV hydration treatments a week and is weak enough to sometimes use a wheel chair. Have other patients had teeth extracted? suffered so much dehydration?   kidneys failing? My husband and I and another friend of his are his caregivers and are struggling with his lack of compliance with what his drs. reccomend.  Anyone with a similar experience or advice would be welcome.

AFib and Base of Tongue Cancer

posted by wifeofandy on 8:25 pm

Does anyone have Atrial Fibrillation as well as tongue cancer? My husband was in the hospital to have the mini-maze surgery when they discovered his tumor and cancelled his surgery. His A-Fib has caused some issues with his cancer treatment because of the coumadin. Because his blood doesn't clot well, his port ended up not working and we're now concerned about the PEG. Anybody have these issues? If so, how did you have the feeding tube without bleeding?

Diagnosed on 1/14/10

posted by wifeofandy on 12:45 pm

All of your messages are so great and helpful. My husband is 60 and was diagnosed with Squamous cell carcinomas of the base of the tonguem, Stage IV. He is being treated at the Yawkey Center at Mass General Hospital in Boston. I have no idea where any of you are from and where you're being treated but it would be interesting to know. We chose to get the most extensive treatment so he is being treated in 2 phases - the first is the induction phase - 3 chemo infusions (for approximately 3 months) of cisplatin (4 days on / 17 days off) of which he's pretty sick for 10 days. His 3rd chemo treatment is this Friday then he should begin radiation with chemo around the middle of April for 6-8 weeks. Phase 1 hasn't been that great but it doesn't sound anything like the radiation phase! I'm pretty nervous about it and very concerned about the long-term effects and how long the recuperation period is.
It be interested to know where people are being treated and if anyone else had the induction and how you did with the radiation afterwards.
 

Suspected diagnosis

posted by acustins on 1:56 am

I have had numbness on the left side of my tongue since June or July. I had a small leukoplakia on the lateral anterior tongue biopsied in August, it was hyperkeratosis, presumably from my damaging it with my teeth because of the numbness. I thought I was in the clear, my hygenist found a small white lesion on my gum, and I returned to my oral surgeon to have it removed just a week ago. It is a papilloma, I had HPV positive cervial lesion as a teenager. I also have been, over the last month or so, been having pains in my ear and shooting down my neck on the same side. My lymph node is hard and this area hurts all the time. My oral surgeon referred me to an ENT because he is concerned about tongue base or tonsillar cancer relating to my symptoms and my HPV history and my recent papilloma in my oral cavity. I already had a CT of the neck by my primary MD that showed "one enlarged lymph node in the carotid chain" I don't know the cm size of it yet, this info was relayed during a short phone call. I am only 29 I am soooo scared. I have a 5 year old son. I am a nurse and I have seen what cancer does to people. I don't want him to forget me or just remember me as being a sick person. I haven't even been diagnosed yet, and I already can't sleep. I am also the sole provider for the household. Because I made more than my husband, he decided to be the stay at home parent, and we won't be able to make it on just what he can make. If I can't work I will lose my insurance and then I don't know how I will get treatment. I know this probably isn't the place to post this, but I need to have some kind of outlet or I feel like I am going to explode. I am very encouraged by reading the survivor stories, they make me feel much better about prognosis and the kind of attitude and perseverance I will need to adopt in order to beat this. I appreciate all of the posts to this blog! Thanks you for taking the time to read mine.

Hi I didn\'t have base of tongue cancer but

posted by mizbrownie on 7:44 pm

Didn't see a group for that-- because it is also pretty rare! At 33  I had a full glossectomy partial mandiblectomy neck dissection radiation and chemo etc. The works. Anways. March 2nd will mark the 3rd year anniversary from my surgery. I have regained my life back relaly well. I can eat most everything but slowly and I can talk pretty well all things considering. I definitnely sound funny but who cares! I'm alive    I just joined livestrong and want to get involved  :) Thanks for listening

What now?

posted by maxsmart on 11:48 am

My husband just finished 35 radiation treatments and six chemo (cisplatin)  He had to have a PEG put in after the third week and spent four days in the hospital getting fluids.  His last chemo was cancelled because his neck was burned so badly.  My question is what happens now.  How long till he is able to taste again.  How long till he is able to swallow and get the PEG out.  We have so many questions about recovery.  The doctors don't seem to have the answers.  We are also worried whether the treatments were successful and the possibility of recurrence.   Interested in others recovery, effectiveness of the treatment and if anyone has had a recurrence.  Thanks

What can friends do to ease the burden?

posted by ky1atty on 6:36 pm

Other than cards, talks, etc..
What really helped you during your treatments?  Don't want to intrude, but want to be there in the right way.

LIVESTRONG SurvivorCare

posted by LAFBrooke on 6:35 am

Just wanted to let you know that LIVESTRONG.org offers info about how to deal with the aftereffects of treatment, tools to keep track of your treatments and ways to find a "cancer buddy".
One of the groups we partner with will match you by cancer type approximate age and such. It's called Immerman's Angels. The guy that runs it- Jonny Immerman- is an awesome dude. Here's info about LIVESTRONG Services and Immerman Angels.

http://www.livestrong.org/cancersupport
To talk one-on-one with a professional oncology social worker about insurance, medical debt, cancer side-effects, emotional support, clinical trial matching, etc: LIVESTRONG SurvivorCare: 1-866-673-7205
http://www.Immermanangels.org
Its so great to the support. Let me know if you need anything.

Living with Cancer

posted by sshay0100 on 7:12 pm

I was treated for head and neck cancer 14 years ago (when I was 26) and remember my last chemo cycle finishing on Christmas day.  My parents picked me up at the Hospital and we went to Dim Sum (Chinese food).  Chinese food would always cheer me up, but that was one of the few time that I wasn't thrilled to see a plate of General Gao Chicken.   
Last year I was diagnosed with Base of Tongue Cancer.  I am now a father with a wife and a four year old daughter.  I have been in remission for a year; however, none of my scans have been "spotless."  I like to joke that it feels like I'm on parole: I still need to see my doctor every two months.  The doctors seem to be cautiously optimistic.
Eating food is more of a chore and I tend to choose my food based on texture and ease of swallowing rather than taste.  I've started a "beans and greens" diet.  I make a batch of beans, asparagus, spinach and chicken broth and run a hand mixer through it until I have a green slurry.  I don't think there's much of a commercial market for my homemade mix of green mush, but it takes away some of the awkwardness of eating and it makes me feel like I'm building some of my body's defenses (I read that high fiber, avoiding meats and fats helps fight cancer.)
My options for fighting the next round of cancer might be down to home remedies - maybe not chicken soup, but I'm keeping an open mind.

operation

posted by gmgm1 on 11:39 am

Best wishes to all, 
I experienced a 20 hour operation, according to my parents.
The surgeon stated that he would be able to save my tongue,
but it was lost. That was 8/31/2005. Has anyone else had a similar experience?

Pain Information

posted by Zog22 on 7:24 pm

Hi. I recently found out that I have base of tongue cancer that has spread to lymph nodes, and start radiation/chemo treatment in a week or so. I've been told that the pain is nearly unbearable... that one can't sleep and this goes on for months. Would anyone who has been through this let me know what it is like?

Eating after treatment

posted by nafus0915 on 7:08 pm

My husband is 51 and was diagnosed with base of tongue cancer that spread to a lymph node in his neck.  No surgery, chemo and radiation.  His treatment ended August 3rd and still not eating or drinking anything by mouth.  He has a PEG Tube.  Doctors tell us everyone heals differently but we are frustrated.  Never thought it would be this long without eating after treatment.  Would love to hear how other have done with eating after treatment. 

looking for a good doctor base of tongue cancer

posted by roxiwen on 7:09 am

My father was recently diagnosed.  I want to bring him to the US from China for treatment. We will have to pay for the treatment out of pocket almost entirely thus we want to make sure he goest to the best specialist in the field.  Wondering if any of you have any suggestions in terms of a good doctor from your experience? 
Much appreciated.
 

I\'m Jim, new immigrant to this strange new world

posted by jeb54321 on 9:00 am

Earlier this year I got an earache that wouldn't go away. 
After several doctor visits and rounds of antibiotics, I visited an Ear, Nose and Throat specialist who felt the back of my tongue and immediately scheduled an MRI.  It revealed the right, base of my tongue and the adjacent lymph node was swollen.  I went for a biopsy the day after my son's birthday, and it confirmed squamous cell cancer.  The PET scan confirmed stage 3 (one node only).  I was immediately scheduled for eight weeks of Cisplatin and daily IMRT radiation.   The tumor shrinkage was immediate and dramatic, as was the loss of taste and ability to swallow.
My treatment was completed last week, and I am now beginning to start researching where I am, what is going to happen next, and to understand the recovery and what it means.  So far, in the greater scheme of things, I'm feeling relatively confident, but I don't know how much of that is denial or just plain ignorance.  It sounds like I've been lucky so far, but I'm still waiting for the other shoe to drop. My next step is to move off of the G-tube as soon as possible, and I have no idea what sort of time frame there will be for that.  In the mean time,
I've been reading about the dangers of dehydration and malnutrition, so I'm doing the best I can to get in liquid food, and I take an extra bag of saline by IV a couple times a week. Be glad to answer an questions I can, and offer any advice based on my experience, and looking forward to gettting the same from here. My wife started a journal page for me, and I recommend it, as its been therapy to have so many people encouraging me through this whole thing. Jim

Feeling Great

posted by Kevin1213 on 10:19 am

My journey with "Base of Tongue SCC"  started on Oct 11, 2007 (my wifes 40th Birthday). I felt like I swallowed a pill and it did not go all the way down. I went to my GP and we thought it may of been allergies, so he put me on some steroids. Few weeks later it was back, I decided to go and see an ENT. He scoped me on Oct 11 and told me I needed to go to the hospital that night. He explained that I had a tumor that was 55% blocking my airway (I had no problem with my breathing). On Monday Oct 15 I went under the knife to do a biopsy. When I woke up I had my new friend (which I had for the next almost 7 months) the trach. The trach was done because of the location of the tumor. The first biopsy came back negative. After several more tests they decided to biopsy deeper into the tumor. It was then I was told I had SCC of the Base of Tongue. In November I started my first of 3 rounds of Chemo, I had a portacath installed in my chest. I was only 46 yrs old, my Dr told me they were going to aggressivley go after this Cancer. He literally said"we are going for the knock out punch right away" and this was going to kick my "you know what". After the 3 rounds of Chemo I did 35 rounds of Radiation then I had radioactive seeds implanted in my tounge(brachytherapy). My treatment finished May 25, 2008. I lost almost 40 lbs during this time, I had a PEG installed between Chemo and Radiation. I lost the ability to taste during the treatment but it came back soon after. I still have reduced saliva ability , but I always have water nearby. I am not a quiter, I never was a runner, but in Oct 2008 I ran my first 10K the in May of this year I ran my first Half Marathon 13 miles. I feel great, I still go for scoping and I am due for my PET in a week or two. I still get worried that it will come back but I continue to move forward. I'm back to work now about a year. If you go to www.doo-rags.com and scroll down you will see a picture of me with my wife and kids. I'm actually doing a round of chemo in the photo. My girls were the best medicine I could of asked for. Later , Livestrong 

7 Months & doing great

posted by rnlz28 on 9:07 am

In November of 2008 I was diagnosed with a stage 3 tumor on the left base of my tongue. I was told I would be facing surgery & radiation. In December I had the PEG installed & the InfusaPort & was preparing for surgery when my surgeon said I would probably have to have the PEG the rest of my life. Wow what a shocker. She said there might be another alternative at the Southern Illiniois Head & Neck Cancer Center, but they don't take everyone for this style of treatment. So I met with the group & they looked over my scans & inspected the site. They had a split decision on my treatment, so I decided to try the non-surgical methode this consisted of 4 intra artireal chemo (placement of the chemo drug directly into the tumor), 7 weeks of radiation ( they had a RapidArc machine of which there were less than 20 in the US at the time), & 8 weeks of a research drug (Tarceva). I stood the treatment very well only having 1 bad week( if I had done what the doctor recommended probably would'nt have gotten sick). The doctors all feel the tumor is gone & I feel great. The PEG was removed in March & port removed in June. I am eating good & am able to maintain my weight, although I did loose about 60 lbs through the whole time. The support from my church, friends, & family have been overwhelming & I thank God for leading me to the SIU Cancer Center & the doctors there. Thank you especially to my wife of 30+ years for being by my side the whole time. 

Two Weeks to go....

posted by BDAZ on 11:08 am

Turns out there was some serious miss-diagnosis. My "clear" CT scans were re-read at the Mayo Clinic and showed and exsisting mass in February which hadn't changed significantly in the June scan. I was evaluated at Mayo for possible robotic surgery but it had progressed into my lymph nodes and so Radiaon-Chemo was called for.
The worst part was the PEG tube..intially placed too close to my rib, I came to in excruciating pain, then had to have it surgically removed and replaced and spent 3 days in the hospital. Four days later it became infected and I was rushed to the hospital and spent a week on an antibiotic drip. I lost 25 lbs during the PEG debacle! I have yet to use it but I hear the last two weeks are the worst.
The most horrible thing has been the loss of taste and saliva. I have started Salagen but I am having trouble sleeping for more than an 45 minutes at a time as my throat dries out and is extremely painful. Any suggestions, tips or tricks? I was thinking of trying a spritz of olive oil before i go to bed. The humitiy in Tucson is very low and the best humidifier I can find ups it about 2%
The chemo has been managable and well tolerated. I may have surgery at the Clinic depending of future PET scans, etc. I am planning on riding The Tour de Tucson, a 109 mile ride, assuming I am recovered enough. NExt year I am going  to Africa, rent a plane and fly to the beaches, game parks and waterfalls, etc..
Life is too short!
 
Cya!
 

Thank you for your response! I am in a fog!!!

posted by Myself1939 on 6:43 pm

I am a 70 year young woman who has had a very healthy life style for many years. In my early days, I smoked 2 cigarettes a day and then after ten years, quit. My dogs and I eat mostly organic food. They sleep on organic cotton beds. I wear organic socks even. I average 2 glasses of wine a week, run, swim, and am a passionate gardner. I am also a kayaker and have kayaked around the North Pole in Norway, Greenland and Svarlbard...when I was 66.
I was just diagnosed with tongue cancer. A large mass that is involving my voice box, tonsil areas, tongue, lymph nodes. Today I had the dental exam. Next week, my four wisdom teeth will be extracted as a precautionary move. I get my port on Thursday and begin chemo on Mon...the treatment is extensive as most of you know.
It is so sureal, I am just pretending to function as a self-employed real estate broker. I have secured all the legal aspects of wills, living wills, poa, durable power of attorney, bank accounts, my small investments... and contacting Briard Rescue so my dogs will be safe in the hands of folks who know Briards.
I am in shock. I am terrified. I am moving along with everyone, doctors, test people, nurses, as though I am in the flow...in short I am bouncing off the walls and find it difficult to steady myself...to return to my own life's language. I am trying to imagine going through this...I keep asking myself am I strong enough?
I am less afraid of dying I think than I am of all the radiation and chemo and extreme sickness...and then what after? I keep trying to focus on one day at a time, but I keep seeing my life flash in front of me...too fast.
The dogs are doing better with it than I am...I have talked to them. I talk to my friends and ask them to be joyful...help me be joyful.
I feel better just having said all of that.
I am open if anyone has any comments, tips, suggestions.
Thank you. I m, Myself in Charlotte NC


 

Urgent Treatment?

posted by Dennis1187 on 8:23 am

I was diagnosed with stage 4 base of tongue cancer (it had spread to my lymph nodes on the left side of my neck) July 16, 2008.  I had seen the ENT on June 25th and she ordered a biopsy immediately.  I was lucky that I found the Head and Neck Cancer Team at Florida Hospital in Winter Park, FL.  My ENT, chemotherapy doctor and radiation doctor acted as a team and decided to go for a cure rather than just manage my condition.  I was 63 years old in very good physical condition (other than the cancer) and they felt I was a good candidate for success, despite the advanced stage of my cancer.  I was a pipe smoker for 30 years and a moderate drinker.  However, I had radiation treatment at the age of 5 for recurring toncillitis and the team felt this was the most likely cause of the particular type of cancer I developed.  Normally pipe smokers are afflicted with upper tongue or lip cancer.  At any rate, I began my 9 weeks of chemotherapy in early August (3 cycles of 1 week of chemotherapy and 2 weeks off), followed by 35 radiation treatments.  I finished on January 6th of this year.  It was not fun -- went from 165 to 142 in weight and had a peg tube put in for feeding during the radiation -- this is a must!   A follow up PET scan in late February showed all the original cancer gone, but a new shadow had shown up in my throat.  It was decided that another PET scan in April should be done.  Two of the doctors felt that the shadow was from a radiation burn.  The April PET scan showed the shadow gone, but three "hot spots" on the left side of my neck, where the cancer was prior to treatment.  On May 11th I had a radical neck disection (removal of the lymph nodes, jugular vein, and neck muscle) on the left side.  I was in the hospital two days.  The pathology showed NO CANCER!  I didn\'t need the surgery, but I\'m glad I had it, now I don\'t have to worry about the cancer coming back in my neck.  By the way, on May 18, after I saw my ENT for a post-op visit, my wife and I got in our motorhome and took off on a 5,500 mile month long trip to the west coast (I even had the surgery staples removed in a walk in clinic in Albuquerque).  Our daughters and one granddaughter flew out to join us in California for two weeks.  We had planned this trip for after my treatment and I wasn\'t going to let surgery cancel it.  I feel great and my weight, while not coming back (148 pound this morning) has stabilized and my strength is returning.  The moral of the story:  Time is of the essence!  The more aggressive the treatment the better!  And don\'t let cancer stop you from doing whatever you want to do!  Don\'t feel sorry for yourself, get through the treatment one day, one hour, even one second at a time when things get really bad.  Don\'t think ahead just survive whatever is causing you pain, nausea, etc.  I look back and can\'t believe a year has passed, but while it was happening I thought it would never end, but you know, it did!  

How Urgent is Treatment?

posted by BDAZ on 11:47 am

I was diagnosed last week after a biopsy. This is after mucking around with this problem for almost  a year, 3 ENT appointments including 2 scopes, and  2 CT scans (both clear).
Other than a phone call 10 days ago. informing me that I have cancer and will need extnsive surgery, and that it is the fastest growing cancer he has ever seen, my ENT went on vacation, my referrel doc at the Mayo Clinc is also on vacation and I have yet to see a doctor.
I demanded a referrel to a local oncolgist, dropped off my scans and records at 7:30 yesterday and 36 hours and two phone calls later I still have no appointment.
Is there a need for urgency or am I over reacting? BTW,
I am a fit 61 year old former competitve cyclist and have been wearing my Livestrong wristband continously  since May, 2004...first for Lance, then my best  friend who died from cancer a couple of years ago, and I guess now for me...  
 
Thanks!

new to group

posted by nepis2 on 11:38 am

i am a 60 y/o man who was very active until learning I had base of tongue cancer in Feb 2009. I  never really smoked nor did I drink on a daily basis so it was even more confusing as to why I would get such a cancer.  I had a lump in my throat that my gp didn't know what it could be so I went to an enT and he found the cancer at the base of my tongue. after a PET scan it was learned that there were also two smaller tumors on the lymth nodes in my neck.  the cancer center here in RI suggested an aggrssive chemo and radiation treatment. That started six weeks ago and I am now on the last week . They said that it was going to get tougher. I wasn't  expecting it to get this bad. Now I can't seem to keep even the nausea medication down,

Living Strong

posted by drwcat on 10:46 am

Hello,
I was diagnosed in April of 2007 with squamous cell carcinoma with metastic base tongue cancer.  I went to Mayo clinic in June 07 and had 9 hr. radical neck surgery and robotic surgery to remove the small tumor on the base of my tongue.  After the one week recovery in the hospital(which wasn't very enjoyable) I came home to recover for a month before starting radiation and chemotherapy treatments. I was not able to eat normally and was getting nutrients from a feeding tube.  During the treatments I lost a considerable amount of weight due to not being able to keep much food down.  In September, I was done with both treatments.  I actually recovered fairly quickly and by Novemeber I was eating fairly normally again.  Taste was still an issue though from the radiation treatments.  I wasn't able to gain my weight back, but I had a lot more energy.  I was good to go for about 6 months till the late spring of 08 when I had some small reoccurences in lymphodes in my upper and lower chest.  I started a 4 1/2 month chemotherapy treatment again that lasted till mid July.  6 treatments in all, one every 3 weeks.  It was really hard to go thru but somehow made it.  I had another small lump in my lower neck return during those treatments but didn't have it removed till Nov 08.  The results of the biopsy showed it wasn't spreading so no other treatments were prescribed.  It is now March of 09 and I just got scan results back from my latest CT and PET scans.  Thankfully, they were clear with no sign of cancer.  I am good to go for another 3  months till the next rounds of scans.  I have gained most of my weight back and have been working out a lot to get all my strength and energy back.  I have neuropathy in my hands and feet from the chemo treatments and take some meds to help with that issue but all and all I feel pretty fortunate to be living and enjoying life and family again.
I have a lot more information if anyone has questions specifically about what I've been through over the last couple of years.  Everyone stay strong and just know that life doesn't end with this diagnoses!

Family member just told she has base tongue cancer

posted by Judy2Ross on 7:39 am

My sis-in-law was told last week - she has base tongue cancer.  Can a CT scan tell for sure if a tumor is malignant?  She is going to a cancer center in two weeks for a biopsy procedure.  Worried about her.....any information is welcomed.  Thanks, kindly.  Judy