Base of Tongue Cancer Survivors! Group

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

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?

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.

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)

IPT Chemotherapy

posted by wamk40 on 1:53 pm

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

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.

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.

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

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

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

Oral Cancer Support - Survivor / Patient Forum - Forums powered by UBB.threads™

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

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! 

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
 

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."

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 !!!!!!!!!!
 

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

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..... ?

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!?!

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
 
 
 

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  

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

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 :))))

 
 
 
 
 
 
 

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 !!!

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

posted by wifeofandy on 1:45 pm

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.

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.

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

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?

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 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!