Hi Everyone - I haven't posted yet but have been diligently reading posts in quest for as much info on this as I can get. What a great site. My husband, Stephen, was diagnosed February 28th{my 40th birthday} with base of tongue cancer. He has a T4 tumor{inoperable} with no node involvement{STAGE 4}He is at Dana Faber and was on a protocol treatment for amifostine. He reacted to the drug with an extremly high fever so they took him off it. We were disappointed but the treatment is whats important. The treatment plan remains the same - Four weeks of radiation {not IMRT} everyday with one day of chemo and two weeks twice a day radiation. I have so much I want to ask and talk about but my biggest worry right now{besides the horror my husband is already living thru at the end of week two} is whether or not a tumor this size that is inoperable can be cured completely with treatment. My understanding is that a T4 tumor is over 4 cm. and has started to spread to tissue and bone. Im afraid to ask the doctor too much with my husband there in fear of the answer. Has anyone known anyone with this type of OC. Please help. By the way I signed in as stephenm but my name is Kerry. Thanks in advance for any input... God Bless You All... you're heroes in my book...

Kerry, I can't answer the above, but I want to share with you that after my husband's recurrance, there were some questions I wanted answers to without John hearing the questions or the answers, so I wrote a certified letter to his surgeon, who has been his primary Oncologist throughout the past year and now knows us both well. I asked my questions, he wrote me back with very honest answers. This conversation is still just between the Doc and me. If there are things you want to know and don't want Stephen to have to deal with at this point-let his Doc know that you need some private communication. Wishing you both the best luck going forward. Amy

Kerry,
Although my cancer was not of the same type as your husband's, my situation wasn't better, if not worse than his because I had lymph node involvement too. Both tumors on the primary site and the neck were too big to be operated and so I just had concurrent chemo-radiation. I didn't have IMRT, either and the whole treatment lasted 7 weeks.It was hoped that the treatment could shrink the tumors to make operation easier. I was so fortunate that after the treatment, there were no more cancerous cells detected and therefore surgery was not necessary. Of course there were complications like high fever during treatment but with proper medication and professional care, things could improve. I am now almost 5 years in remission. Just hope that my story can give you some encouragement. Don't be afraid to ask the doctor questions because you are dealing with a life and death issue. People here can also give you enormous support and I'm glad you have found this forum.

Karen

Kerry - I too had inoperable tumor in tongue base and mets to the neck. No surgery. It sounds like my chemo and radio treatment lasted longer, but much the same. I had "induction" chemo daily for six weeks, then radiation twice daily and daily chemo for twelve weeks - one week on, one week off. I just passed my 3 year anniversary and I'm feeling great.

Treatment ideas are quite different from one clinic to another, and the 'best' ideas change quickly in each clinic. But, there are MANY survivors here - all of whom had very different treatments. Some had surgery, some didn't, some had radiation, some didn't, etc. Do a good job of picking your docs, and asking lots of questions. You guys can do this. Be stong. Tom

Kelly,
Like Tom mine wasn't operable either so I had ct/IMRT and am also a 3 year survivor with a "complete response" and minimal negative effects. Mine was a stage III/IV because of the size and slight invasision of the soft palate (moderately well differentiated). It doesn't necessarily mean it has spread to bone. You would have to give us all of the TMN information, that staging alone doesn't tell the whole story. Base of tongue cancers typically have a 25% chance of node involvement, which is much lower than other forms of oral cancer.

Hardly anybody makes it through Amofostine so don't feel too badly about that - it's worse than most ct. I think I can count about 2 or 3 people here who got through the entire treatment.

My husbands info is T4N0M0 . The doctor said it is pretty rare for a tumor this size not to have node involvement so we were lucky in that respect. I guess what I really am asking is can people live to be ninety after going thru this..not that I personally would like to actually live to be ninety. My husbands taste is already gone, or worse yet everything tastes like metal. Hes having a really hard time with that. He wants to eat so badly. Weve been to the nutritionist and I have tons of recipes from a book I got thru the OCF site. Isnt this early... hes only barely two weeks into treatment. Will the metal taste eventually go to no taste at all..I think no taste would be better than a bad one. The bad part is he only weighs 143 pounds at six feet tall going into this. That scares me to death. He has a tube thank god. Were starting the pro-sure twice a day thru the tube and hes already sick of the ensure.. I feel so heartbroken for him... I am keeping the faith but we have a long road ahead of us..Thank you all for your responses - you are all the only ones that truly understand the horror of this disease.

Kerry

Hi Kerry --

My husband Barry had a stage IV base-of-tongue and right tonsillar tumor as well as two lymph nodes involved. His tumor, before the tonsil was removed (the surgeon would not do anything with the base of tongue portion because of the probability of long-term speech and swallowing difficulties) was over 3 cm in longest dimension. He was treated at Hopkins with 33 radiation treatments for a total of 66 Gy (30 full-field and 3 treatments a "boost" to the primary target area, for him the tonsillar fossa and base of tongue). Along with that he had chemotherapy, my husband got 7 small doses of carboplatinas a radiosensitizer. Today they would also have added Eribtux, per our RO. He also took amifostine throughout, except on chemo days. Luckily he was one of the few who could handle it -- most apparently cannot, at least not for the entire time, your husband's experience is not at all unusual.

Hopkins is routinely testing all HNC patients for human papilloma virus-16, and finds that a very high % are positive -- most presenting in the tonsil and base of tongue. Dr. Gillson who is the HPV guru at Hopkins says that Dana-Farber also has a program on HPV HNC, you might ask if they tested your husband's tumor. It makes no difference in his treatment but HPV positive tumors are supposedly more sensitive to the radiation and less apt to recur, which is a positive thing.

My husband was able to eat all the way through but they did insert a PEG and it is a life-saver for many. The important thing is for your husband to try and keep swallowing (even if only water) as much as he can to keep the mechanism working. The metallic taste is probably from the chemo -- my husband had it at first, he could only drink a few kinds of bottled water, for example -- Poland Spring was the best -- but that went away. Mostly it is no taste (he had a little, the radiation field spared the front of his tongue, he could weakly taste some sweets and some foods like, interestingly, seafood) but eating was no joy -- "food is medicine" he would say all the time. We pureed soups and other things, he could eat soft scrambled eggs, cream of wheat etc. plus of course the dreaded Boosts and Ensure. the hospital gave him several cases of a hi-cal flavorless nutrient formula for PEG use that we used as a base for smoothies in the blender.

He was his ideal weight when diagnosed but his MO recommended he put on weight before treatment "because you are going to lose 20 pounds" -- he actually didn't during treatment -- lost about 12 pounds but then lost another 8 or so in two post-treatment infections so her prediction was right...

Barry is now 6 months out of treatment, two PET/CT scans and several physical exams have found no sign of cancer but he knows he will have to be monitored for years and will have to keep his fingers crossed as well. He has regained about half the weight he lost and eats normally, has had his taste and all back for months now. We went to Mexico birdwatching in the Sierra Madres in January -- a high-energy trip-- and he did better than the friend who came with us.

From your point this looks like a very, very difficult road -- and it is, no hiding that fact -- but there is an end and there is a future. Barry's ENT surgeon herself had HNC 18 years ago and made it through the rigorous treatment of that era (no PEGs, old-type radiation) and she was a font of encourgement and knowledge. In fact if it hadn't been for her example he may not have undergone treatment. He was very concerned that he would end up debilitated and unable to do the things he loved, like world-travelling.

Now of course he realizes that he made the right decision and is looking ahead, not behind.

You have found a great resource, not only for advice but also for encouragement and support -- this treatment is about as hard for the care-giver as for the patient.

Be strong...

Gail

Gail,
Eventhough I have never met you, I have read several of your posts that exist throughout this website and have found them to have helped me in so many ways in handling so far my father's treatments. He is 3 weeks into radiation and about half way through chemo. I just wanted to thank you for all of your insights as it is such a tough road and your read so many horror stories. Your posts always give me hope and state the facts. Kerry- I have found this website to be my rock, so far - keep the faith and like Gail said be strong but continue to posts questions and just venting if you need to as everyone on this site is great - I don't know how we can thank Brian enough!

Gail,

I cant speak for anyone else but,

I am shooting for 90.

Hell, I would be happy with 44.

Every day is a gift after this terrible disease.
I wish you and your family the best. DF is a great hospital and they certainly know what they are doing. That being said, if you feel uncomfortable at any point, you should seek other opinions. Your don't want to spend the rest of your days wondering. It worked for me. I looked into-10 hospitals after diagnosis. I know that no matter what happens, in my mind, I made the right decision.

God bless.
-Robert

Gail...thank-you for your insight. And ,yes, my husbands is HPV 16 Positive{never smoked a day in his life} and the doctor said it would respond better than say a basaloid SCC. Can these types still re-occur? What I really want to ask you though is whether or not the food tasted bad to your husband. You said he ate right thru and my husband, who can still can swallow at this point in treatment will only drink frappes because thats all that tastes good to him, At the risk of sounding ignorant or insensitve, shouldnt he be eating even if it doesnt taste great.. I mean certain things are really bad but the foods that are tolerable he needs to think of as medicine for another part of his treatment- a huge part.. My husband is at least 20 pounds underweight going in so Im scared..Hes six feet tall and 140 pounds.. How should I be handling this?? He just shakes his head and looks at me like I just dont understand. He's depressed already {we have four weeks left and the last two weeks are 2 times a day XRT}and he keeps saying "how do people do this..I dont know how Im going to do this" What can I do for him at this point - anyone???

Kerry,
My husband was much like yours going into the treatment. He is 6'2" and pre-diagnosis weight was something around 148. At 3 years post treatment, he is now at 142.

Is your husband being monitored by a dietician? For these skinny guys, it is especially important. Also, there are may liquid foods for the feeding tube that can be explored. I know that just after treatment the dietician moved my husband on to a product that had pre-digested proteins because it was determined that his treatment-traumatized body could no longer break down complex proteins.

The taste stuff will go away over time. The important thing right now is for him to get adequate nutrition in whatever way works.

We're all pulling for you,
Anita

Kerry,

I went with the "food is medicine" approach for several months (I didn't have a tube, so I was relying on everything by mouth, even when it tasted awful and my mouth was burning all the time). I started with basic frappes, but then added different kinds of fruit and other ingredients to try to get more calories and nutrition. I also ate things like cold or warm (but not hot) soup, cream of wheat, all sorts of baby food, instant breakfast, and anything else that was soft and mushy enough to swallow. Your husband needs to get his daily intake needs however he can -- by mouth or by tube -- but if he's going at least partly by mouth, he needs to recognize that the taste buds won't be back for awhile (but they do come back).

I also remember asking the same question he is asking -- "how do people do this" -- but my radiation oncologist reminded me that I was only 39 and had a lot to live for. (By the way, I'm now 56 and very glad I didn't give up part way through the treatment.)

Try to take just a day at a time rather than focusing on how many weeks of radiation he has left. Also, please be sure there is someone at the hospital who is helping to track his status with nutrition.

Cathy

Kerry - There is no magic to this that I know of. He has to eat. As he loses strength and weight, his symptoms get worse. As his weight goes up and his fluid intake goes up - his symptoms will decrease. How do people do this? They force themselves to eat - just like they force themselves to go back into the chemo room each day, and back into the radiation room each day. This has nothing to do with 'tastes good' - this has everything to do with "Feeling Terrible".

Please read him this message. How do people do this? They eat, and they eat a lot. It all tastes like tin foil, and they eat it anyway. They drink 3 or 4 times as much water as they think they can - and they actually feel a bit better.

You lose too much weight - you cannot finish the treatment, and you know where that leads. Lots of people beat this disease. You can too, but it isn't easy and it doesn't taste good. Drink high calorie nutrition drinks and get your calories in a hurry (yes, they taste like foil too). Don't worry about taste - be glad you have the ability to taste - it does get better.

You can do this. Get mad. Drink the Ensure. Drink the water. Don't let the beast win. Be strong. Tom

Hi Kerry. Although I admire Tom's resolve and wished during my husband's treatment that he would attain that same attitude, very soon after he started, he would not eat anything, and we had "words" about it. I felt as you, that even though it didn't taste right, he should try to eat anyway, as nutrition was imperative to healing, and he retained his ability to swallow. After awhile, I accepted that due to the nausea and the taste issues, taking in anything to any degree other than water or ice was not going to go well, so we focused on just using the PEG tube to take in nutritional supplements (first Jevity, then we went to Boost Plus because of higher calorie content within 8 ozs., plus I would add Whey Protein into it for additional calories and nutrition). Also, the feeding issues became less of an emotional battle once my husband started taking an anti-depressant (Zoloft). This helped greatly with his attitude to keep at it. He still had and still has challenges with keeping weight on, but we have dealt with them more peaceably than when he started out.
There were times I wondered as well how on earth my husband could make it through these treatments, but to be honest, he made it through the treatments better than I anticipated, even with the nausea issues he had throughout.

Just don't look too far ahead, as it creates anxiety. You will find that you adjust each day to whatever it is you have to deal with at the moment, and then all of the sudden, it is the next day, and then the next. Try to consider each day of getting through treatment as a step forward, no matter how challenging that day may have been. I know it's easier to say that now that my husband has finished his chemo-radiation treatments, but we still have challenges ahead with surgery scheduled for this week, so I will try to remember to practice what I preach!
Take care and best wishes for your husband's complete recovery.
Michele

Thank you so much all of you. Your words and just knowing how much you all understand what were going thru are true therapy for us. You just feel so alone sometimes, and we have a huge support group of friends and family, but I dont think people can really understand what its like. I had my husband read the posts and it has given him hope and comfort to know he's not alone...God Bless And Michele, all our best with your husbands surgery. Hopefully it will seem like a breeze compared to what he's been through...All our best

Kerry

Kerry, Michele and Tom's posts was so good.{and pretty much summed up both sides of this experience.] John and I have had lots of "words" also while I watched the weight melt off of him. Something that has helped us are the 100's of pages I have printed from this forum dealing with the particular stage he was going through. As he started reading what other people were doing and how they were feeling and coping, it has given him more incentive. Plus, it helped that I was not the only one urging caloric and water intake! Your being his advocate will help him improve so much faster. Amy