Base of Tongue Cancer Survivors! Group

by Droosa on Apr 6, 2010 at 11:28 am

My cancer appeared via a lymph node so there is some difference there.  8 weeks of radiation and chemo once a week took care of the cancer.  I did not experience any ear pain during that time.
About the weight...  I did not have a PEG and they kept telling me I had to eat, which is difficult without taste.  So I decided to use Ensure.... Vanilla and warm...  I can tell you if you drink enough you can maintain or gain weight.  BUT into the treatment your throat burns when you drink the stuff.  There were days that I really had to force myself to drink the needed amount... 2000 calories.  Although the burn only lasts for seconds it is tough.  But my last visit with my Oncologist told me I was further ahead in my eating and weight compared to another patient the ended his treatment six weeks earlier than me.
Good Luck.... 

by hilaryp118 on Apr 8, 2010 at 9:57 am

My dad has not started treatment yet... but I have been doing some research on different cookbooks to help with ease of eating and comfort. You can google "dysphagia" diets or oral cancer cookbooks and see what you come up with. Several cookbooks are available offering pureed food, shakes, etc. There should also be a dietician available with your treatment team. If not, ask for one.

by maxsmart on Apr 9, 2010 at 5:58 pm

Hi, My husband also had ear pain and a sore throat.  The ear pain went away when he started radiation. About a month into treatment despite his best efforts he was unable to eat or swallow water.  He had to be hospitalized for dehydration and a PEG was put in.  He had lost over 35 lbs in a very short time.  He has been finished with treatment for 2 months now and still has the PEG.  His mouth is too dry and everything tastes to terrible for him to eat.  He can swallow water.  He really didn't want the PEG but now he would tell anyone in the same situation to get it.

by paul1959 on Apr 9, 2010 at 11:19 pm

 Hi I suffered earache for about 3 months before finally being diagnosed with BOT Cancer, I had a peg fitted before treatment but was determined not to and in fact didn't use it.  The treatment affects different people in different ways but one thing that seems fairly common is that the earache stops once radiotherapy starts so I wouldn't worry too much about that.  The mouth will get dry, just make sure your husband drinks plenty of water personally I went through around 3 litres a day.  The throat will get sore but to what degree no-one can say, drink plenty of water as I said earlier, try green tea also and be determined to eat naturally even if you have to puree your food.  The treatment does work, I am now three years out of treatment and looking good.  Best of luck and best wishes for a speedy recoverry

by butchsdaughter on May 13, 2010 at 9:42 am

My father is currently experiencing ear pain.  He has been told it is because the tumor is actually pushing against a nerve.  I couldn't say if that is any sort of consistent situation, but may be something to ask about.
How is your husband doing? It sounds as if you would be at least partially through the treatment regimen at this point. I hope all is going well.

by Paddyj on Jul 18, 2010 at 4:02 pm

ear pain and head pain were the main sypmtoms , this neuropathic pain is relentliss but he is takingmedication to help

by MarenMeg on Apr 6, 2010 at 5:43 am

My husband has a small chin and jaw line and 3 doctors said that robotic surgery is not recommended.  Even if he had the surgery, he would still need radiation and chemo so we've opted for the chemoradiation.  My husband begins treatment, hopefully, on April 12th.  No lymph nodes are affected at this time.  Good luck.  It is a scary time for our family.

by hilaryp118 on Apr 8, 2010 at 9:39 am

 Thank you for replying!  We are returning to the surgeons office tomorrow for more info on the TORS (transoral robotic surgery).  We may get a third opinion at the Mayo clinic or MD Anderson and make a decision from there.  We are very scared too!  I am heartbroken over the battle that is to come...  Good luck with treatment, I wish you and your family the best!  Keep up with updates on his progress ;)

by butchsdaughter on May 13, 2010 at 12:58 pm

hilaryp118 - have you had any more info on the transrobotic surgery? it may be an option for my father as well and we are trying to learn a bit more about it in tandem with other treatments. I think  we will be heading to MSKCC in the next week so that will give us a good education but just wondering what you found out.  Thanks! Hoping he is doing well.

by hilaryp118 on Jun 2, 2010 at 12:03 pm

 Actually, when we returned for the follow up visit re: TORS we found out that the tumor was actually larger than they initially thought.  Therefore, they no longer recommended that route for us.  We went ahead with a bilateral modified radical neck dissection.  My dad just got his mediport placed today, PEG tube tomorrow, and chemo to start on Monday.  I did do lots of research on the TORS and it shows promising numbers for recovery re: base of tongue cancer.  I wish you all the best in your quest for treatment options. I hope your dad is doing well also!  

by MarenMeg on Apr 6, 2010 at 5:46 am

Is the tumor at the very back or base of your tongue?  Catching it early is excellent!  Staying positive does take a lot out of people because you add all the thinking and worrying which takes an emotional toll which, in turn, makes you physically tired.  My husband is known at our university as a motivational speaker and now he must really walk the talk--no kidding!!  Once treatment begins, I'm sure we will be focused.  Right now the "hurry up and wait" process is excruciating. 

by fmgags on Apr 6, 2010 at 11:00 am

Mine is on the right side where my molars were. I had a bad set of molars that were actually biting the tongue. It seems to be exactly where the teeth were causing a problem. Not sure if that is the cause or not. I don't smoke, I drink but socially. The doc told me they don't see this in people under 50 that don't really do either which is why I am suprised. Had my ctscan friday and have not heard any results yet. I am assuming i will hear something on wed when i have my appt with the onocoligist (sorry if it is spelled wrong) just hoping it is just that spot and can be surgically removed.

by JFarrington on Apr 7, 2010 at 4:50 am

Hi, I really feel for you, you are in exactly the same place I was a year ago, and I understand exactly how you're feeling.  I am female, was 40 at time of diagnosis, I've never smoked and only drink socially too, I'm not overweight and always thought I was very healthy and then I was diagnosed with base of tongue cancer, a year ago.  I was shocked, as were all of friends and family.  Though my cancer was slightly different from yours, I do understand your feelings.  The waiting is the worse part, once I started my treatment I seemed to calm down and just get on with it.  I have two teenage boys and just couldn't bring myself to tell them until the treatment started.  But I'm through it now, it's gone, so I just wanted you to know that it'll probably be a rough journey but there is light at the end of the tunnel.  Sending you lots of good luck and best wishes.Stay positive.

by fmgags on Apr 7, 2010 at 5:33 pm

Well got some good news today. Initial ct looks like it has not spread to the lymph nodes and might just need to be surgically removed with a possibility of rad & chemo. Pet scan ordered for this monday coming to get a better idea of what is going on. Initial prognosis sounds good. I want to thank those who have responded to me as this I have known others with cancer and never realized the amount of energy going through something like this takes out of you. I have only begun traveling this road but feel a little more at ease as we progress through this.
Frank

by hilaryp118 on Apr 9, 2010 at 7:19 pm

 We met with the treatment team today.  They warned that the Cisplatin chemo is very hard on the kidneys and would require a two day hospital stay in order to properly "flush" out the kidneys.  The radiologist also said we should get a dentist's opinion on teeth that may need to be extracted because the radiated mouth and gums do not heal well.  Good luck with your friend, he's lucky to have you... in the end he is an adult and he'll have to live with the decisions he makes.  

by catya88 on Mar 9, 2010 at 10:40 am

I am a caregiver to my boyfriend. In December 2009 he was diagnosed Stage IV BOT and throat cancer. He had 7 weeks of radiation, every day and chemo once a week for the 7 weeks.
Here's Tim's story. The doctors really shot from the hip, didn't pull any punches. He didn't have the biopsy yet and the ENT said, You have cancer, wrote him three scripts for, lab, ekg and CAT scan. Had biospy December 7 on tongue and confirmed everything.
The radiologist was even more brutal. He said, by week four, you'll hate me, when it's all over, you'll wonder why you even bothered. Sounds bad, but my boyfriend truly likes all his doctors and there frankness.
He got bad radiation burns but survived all treatment with only one day of nausea.
After treatment stopped, the fun started, he went into the hospital four days after his last treament for pain management, it was bad. The mucus was bad but happy to tell you, that only lasted a little over a week.
The fatigue has hit him now and he's working half days.
He just found out today he'll need surgery but I don't have any details on that right, I'm still at work, will find out tonight.
A friend who does massages on cancer patients gave us some stuff from Lindi Skin to help with his burns, very expensive but it was good. He got cream from the doctor that they use on burn victims and I'm happy to tell you, he has some really nice and soft skin on his neck now, LOL!
He got his PEG before treatment started. Swallow, swallow, swallow as much as you can. Tim can only do liquids now, water/tea/coffee. Before treatment stopped he could still get pasta and vegatables down orally. Now he is on 6 cans a day. Unfortunately, he had no weight to lose before treatment so........he lost 20 pounds and doesn't look reall healthy.
He only had one fever that sent him to the hospital but it turned out to be nothing.
The hospital where he was treated had a chemo class that I attend that was really helpful and they outlined every aspect of the chemo, had all the scripts he needed for nausea, three of them and talked about the importance of the bowel movement.
I've also gotten good advice through the support group on cancer.org.
Cathy
 

by spok56 on Apr 1, 2010 at 3:52 am

Hi Catya,
My husband is 62 and has just been diagnosed with BOT cancer.  Wouldn't let me go to the first appointment with him and I am madly trying to get as much info as I can before I meet with the surgeon and radiotherapist and bombard them with questions.  We are both self employed, have private health insurance but no loss of income insurance.  We have our own businesses.  His business will probably not survive as he is a sole trader but I need to know exactly how sick he is going to get with all the treatment and whether or not I am going to be able to continue to work or he is going to need me with him fulltime.  I have two children who live at home and are both at university so they should be able to assist.  I am trying to stay positive but it is the not knowing that is killing me.  At least if I know I can plan. 
Sue

by maxsmart on Apr 1, 2010 at 6:06 pm

Hi, My husband is also 62 and was diagnosed with BOT cancer in early November.  He also owns his own business with one partner.  He has an office at home and was able to work for all but about 6 weeks.  He was able to do most of his work on the computer or over the phone.  He does travel for his job and has been unable to do that.  After about the third week of treatment he got very fatigued.  I would say from the middle of the treatment until about a month after was the worst time for him. He has also had a lot of trouble eating and had to have a feeding tube put in after he got dehydrated.  If the doctors suggest a PEG it is a good idea.  My husband was sure he could manage without one but he couldn't do it.  He is still not able to eat, he can swallow water.  He is working in his office all day now and he even mowed the back yard today. He has also played golf the last 2 weekends.  I hope this gives you some idea of what to expect.  My husband had 35 radiation treatments and 6 weeks of chemo with Cisplatin.  He was scheduled for 7 but was not able to have the last one due to some infection around the tube. One other thing my husband did not need someone with him at all times and really did not need a lot of constant care.  Since you have two children at home that can help, you should be able to continue to work.  Let me know if you have any other questions. 

by MarenMeg on Apr 6, 2010 at 5:49 am

What is PEG?  My husband is trying to drink a lot of Ensure and Boost in order to gain a bit of weight before everything begins.  Is this a food supplement?

by spok56 on Apr 7, 2010 at 3:49 am

Percutaneous Endoscopic Gastrostomy (PEG) is a surgical procedure for placing a tube for feeding without having to perform an open operation on the abdomen.   It is used in patients who will be unable to take in food by mouth for a prolonged period of time. A gastrostomy, or surgical opening into the stomach, is made through the skin using an a flexible, lighted instrument (endoscope) passed orally into the stomach to assist with the placement of the tube and secure it in place.

by JFarrington on Apr 7, 2010 at 5:08 am

Hi, Here is my little story, hope it helps anybody with BOT cancer.  This time last year I was diagnosed with BOT cancer.  I'd had a swollen lymph gland in my neck, that was removed, from that they told me it was cancer coming from somewhere in the aerodigestive area.  I had an MRI, CT and PET scan.  It was the PET scan that located the cancer, which was squamous cell carcinoma at the base of tongue.  I then had a biopsy on the base of tongue.  The waiting to find out the treatment was the most worrying time ever, I was told I'd have to have 6 weeks and 3 days of daily radiotherapy (not weekends), and weekly chemotherapy, which was to take place the same time as the radiotherapy.  I was 41 at the time, I'm female, I've never smoked and only drink socially.  This was a big shock to me, I'm not overweight and considered myself very healthy.  I had a PEG fitted, but tried my hardest not to use it and try and swallow what I could, but over the weeks it became increasingly more difficult to swallow even water or any medication, so I had to use it, but it just seemed to upset my stomach and I had even more problems, so I refused to use it and just lived on a quarter of a tin of Ambrosia custard for about a month, everything was painful to move over my tongue as it was all blistered.  I spent the last 8 days of treatment in hospital, as I was dehydrated, I had to have a couple of pints of blood and have daily morphine.  It was horrendous.  I lost my voice totally for about a month, then it came back gradually.  But I was finally given the all clear and I'm now about  10 months after the treatment and doing fine.  I still can't taste very much and my mouth is incredibly dry so hard to eat foods like biscuits, chocolate, potatoes, bread etc and I've lost about 2 stone.  I have monthly appointments, so still feel looked after.  My Oncologist and the team of radiotherapists were absolutely fantastic, I can't praise them enough.  Fingers crossed it never comes back.  Good luck to all.

by mizbrownie on Mar 7, 2010 at 8:01 pm

Hi there- I didn't have base of tongue cancer but aterior tongue cancer. I'm 36 but was diagnosed at 33. I understand how frightened you are.
Try not to spiral. Its easy to do when there are so many unknowns.
Have you had a positive biopsy and MRI/Petscan yet?
I'm glad that you are being watched by an ENT and oral surgeons who know what to look for. If you do have this disease then it sounds liek they will catch it efore it becomes any sort of problem..
Base of SCC tongue cancer with HPV is actually much more responsive to treatment than other SCC's so if that is the cause it is acutally better.
You will be completley covered by disability during your recovery from this if it comes to that so don't stress too much.
I am on this website oralcancerfoundation.org. It s a great support center for people with oral cancer. Feel free to email me if you have questions.
 
Hang in there. Everything will be OK.  K

by dsaw on Feb 9, 2010 at 6:33 pm

I have good news for you.  My husband's case sounds exactly like your husband's.  We, too, felt as though the docs didn't have answers for us.  My husband's last treatment was 3.5 years ago.  He's had no recurrence and each doctor visit has brought relief. 
My husband's taste wasn't the same at all for a while, but it gradually did return.  In our case, the first year after treatment was a gradual improvement in so many areas.  Although that may seem long, each week and month brings improvement.  Advice to your husband regarding the PEG tube:  Keep working at trying to swallow soft foods and liquids while the tube is still in place.  Nutrition can be added via the tube, but stay determined to swallow whatever he possibly can. 
My husband has not had a recurrence, and it was within a few months that it seemed to the doctors that he had a complete positive response to the treatments.  Don't be discouraged, because it takes time to recover from this huge ordeal.  Keep trying to encourage swallowing, and don't feel as though you aren't making progress toward recovery, because every day is a success.  Sometimes it's one step forward, two steps back, but you'll find yourself looking back and realizing the progress you've made. 
Let us know if there's anything we can do.

by maxsmart on Feb 10, 2010 at 3:51 pm

Thank you so much for your words of encouragement.  It is good to know from someone who has been there that there is a light at the end of the tunnel.

by paul1959 on Feb 26, 2010 at 2:03 pm

 Hi
I was diagnosed with stage four squamous cell cancer at the base of my tongue at the age of 47 in December 2006, I had the same treatment as your husband which finished in March 2007.  My side effects cannot have been as severe as your husbands as although painful I managed to eat some solid food all the way through, my biggest problem was constipation which lasted 23 days and landed me in hospital for a week.  My wife and I also felt that the doctors were short on answers but when we look back now we realise there's not a lot they could have told us until treatment had finished and the inflamation had settled down.  My taste buds took about six months before things started to taste as I remembered.  The lack of saliva was a bigger problem and lasted for three years, it is still not at full production but is managable.  On that score your dentist or doctor can prescribe special oral products to help but I personally found good old water worked best.  I am three and a half years into treatment and there has been no sign of any recurrence,  I am now on three monthly check-ups where they have a look at the base of my tongue with a camera and check my general health.  Three months after treatment had finished I returned to work on a part time basis, full time after six months and playing five a side football again also after six months.  The best advice I can give you is stay positive and keep focused on that light at the end of the tunnel because we do come out smiling at the end.
Best Wishes
Paul

by maxsmart on Mar 4, 2010 at 6:01 pm

Paul, Thanks for the reply.  I am glad to know that you have not had a recurrence.  My husband is having a problem with lack of saliva also.  Since my first post he is now able to swallow water.  He is very anxious to lose the PEG.  Hearing other people's experiences has been a big help.
 

by JFarrington on Apr 7, 2010 at 5:39 am

 
I've just seen your msg, my treatment sounds identical to your husband's, same treatment and PEG etc.  I also missed my last chemo because I was too poorly and my neck was badly burned, but it cleared up within a couple of weeks and now looks no different at all.  I am 10 months after treatment now.  I had my PEG removed about 7 weeks after the treatment.  I had tremendous pain when it was inserted and once I started using it I suffered with tummy upsets, so in the end I just used it for medication and water.  I tried my hardest to eat normally, but as you know, it was painful and difficult, so I survived on the minimal amount of food, but I just wanted it removed because I hated it so much, it made me feel like I was still ill and I just wanted it all gone.  All I can say is that every month is a little better, but 10 months down my mouth is still extremely dry, hard to swallow bread, potatoes, chips, biscuits etc, my taste is much better now, but not fully recovered.  I have had the all clear, but still on monthly check ups, they are very thorough and put a camera up my nose and down my throat each time.  If you have any questions about my recovery that might help you, please do not hesitate to ask.  Good luck with your husband. x

by sshay0100 on Feb 1, 2010 at 8:31 am

Babysitting, household help, yard help and getting some of the chores done would be a wonderful way to help out your friends and family.  Hope your friend is doing well.

by mcshade on Mar 4, 2010 at 8:02 pm

It is highly probable that I also will lose a large part or all of my tongue in order to eliminate my cancer.  What has been you post operation experience with the quality of life issues?

by darrasps on Dec 14, 2009 at 11:25 am

Hi Zog, I was diagnosed with Stage 3 sqaumous cell base of tongue and lymph nodes 9/28/05. Still here. Was treated in a protocol at Unv Miami Sylvester (sylverster.org) 4 mnth treatment 6 weeks chemo (erbitux, taxol,carboplatin) 2 weeks off 7 weeks chemo and radiation. No surgery. No tube, No port. Toughest part bad rash with chemo get on minocyline to minimize rash. Radiation burned neck had to stop 1 week before finishing. Mouth sores really bad from radiation. Looked like I was dead when they were done. Hair went to thin and total white. It was a rough protocol but that erbitux is the goods against reoccurence. Neck still numb. Can't get any major lower dental work without going in a hyperbaric chamber for 2 1/2 hours a day for month. Which i really don't see me doing. Get your bad teeth out on the bottom before you start anything and make sure your good about keeping them clean afterwards. Felt like I had a flu most of the time tylenol 8 hour was really what got me through it. Everything else was ugh! It's rough but if you're going thru it use that erbitux I really think that's the best shot on beating this long term. Let me know if I can help! GOOD LUCK. CHIN UP BE STRONG There is a light at the end of this tunnel. Peter

by Zog22 on Dec 14, 2009 at 7:33 pm

Hi Peter. Thanks so much for your prompt reply and encouraging remarks. I am supposed to have erbitux for the chemo part. No surgery. 7 weeks, 5 rads/week and 1 chemo/week. Start Dec. 21. I did get a full dental check & cleaning. How did you manage to eat without a tube? Were you able to swallow? Sound like you are much better with pain than I think I will be. What did you do to pass the time? How did you sleep? Could you lie down? Did you get nauseous? Could you talk? How did you get to and from the sessions? (I live alone) Were you able to shower, etc? Were you able to read & watch TV? So many questions.... Thanks again, Peter.... Don

by darrasps on Dec 15, 2009 at 9:45 am

Hi Don, I drove my wife came with. They won't let you leave alone. They gave me the 3 chemos 1 day a week for about 6-8 hours for 6 weeks.(erbitux, taxol, carboplatin) then 2 weeks off then lower doses of all with the radiation for 7 weeks. It's only during the radiation that the mouth sores begin. I never drank any of that stuff or took the mouthwash to numb. Just gut it out and eat soups and soft mushy stuff. I didn't miss one day of work. Of course I have my own business. The rash from the erbitux is the worst. Mine went to grade 4 in less than a week and they should have put me on the minocycline at the start. It was bad and a bloody mess. Then the 6th week of radiation just fried my neck which made them stop for a week. Another bloody mess. Just focus on yourself don't worry about anything else. Everyday you go through gets you closer to the other end of the tunnel. Upside is I don't have to shave below my jawline. HeH HeH! Never really got nausea just flu like symptoms and the tylenol 8 hour is what got me thru. I ate um. Pretty much a zombie for 4 months but oh was it worth it to stop what 40 years of smoking did! You smoked!!!! Forget about sex for while. Other than that you'll be able to do what you did not just as much. Don't forget the minocycline! Good Luck and keep me in the loop. Don't be shy ask me anything! Beat this thing!!!!!!!! Peter

by Droosa on Dec 21, 2009 at 12:40 pm

Don,
I just completed the same regiment you appear to have scheduled at the end of July.  I had a port put in which I think is wise and elected not to have a PEG.  Peter is right, you have to convince yourself to drink your nutrition.  It is painful, but I was drinking Ensure and lost less weight than most with a PEG.  Anyway after 7 chemo treatments and 36 radiation the biopsy of the tongue came back negative.  However, the lymph nodes in the neck did not shrink back below 1cm so my Oncologist and ENT surgeon convinced me to have a Modified Radical Neck Dissection.  I had that 2 weeks ago....  Ear is numb and one side of my mouth opens wider than the other but the Surgeon is convinced this will go back to normal.
This is cancer is bad but curable and you should have good results from the treatment.  Keep a positive attitude you will prevail and good luck
Dick

by Zog22 on Dec 24, 2009 at 9:27 pm

Dick, thanks so much for your reply. Congratulations on your victory! What chemo did you have?  What were the side effects? How tired were you during the treatments? What did you need most help doing? Sorry for all the Q's but I'm trying to prepare as much as possible. Thanks again for sharing your experience. Best wishes for the future. Don

by kstover1 on Nov 18, 2009 at 11:45 am

nafus0915
I'm also 51 and have the same cancer your husband has, lymph node included. My last radiation treatment was Sept 16. I'm a hardhead, no feeding tube. I have managed to only lose 7 lbs through the whole ordeal. I currently drink 9 bottles of boost per day, it burns and I dread each bottle but I manage. Has you husband tried tripple mix (Saladryl Antacid Lidocain) prior to trying to drinking? Tripple mix numbs the mouth and throat, I use it with each feeding.
I'm still very weak, but alot better now that I was three weeks ago ( My treatments ended about 3 weeks ahead of your husbands). My Dr. told to not to expect much inprovement until 3 months after my last treatment.
This is the worst thing that I have ever gone through, but I honestly believe that it was/is even harder on my wife. I'm sure that  it's the same with you.
Keith
 

by nafus0915 on Nov 20, 2009 at 5:27 pm

Keith,
I wish you the very best and we can honestly say we know what you are going through.  My husband does use the "numbing" medicine as we call it.  He had a PET Scan last week and he is now cancer free and I know the same is in store for you.  He went to the Dr. on Thursday and he has an infection so itson antibiotics and yeast medicine.  He feels 100% better since being on this medicine.  He feels like he is close to at least drinking by mouth.  Our doctor told us last week that this will take an entire year out of our lives.  We are very grateful for his recent PET scan results and look forward to the continued healing.  Hang in there.  It is hard on the spouse and I know how your wife feels but having a cancer free husband is worth all the struggles. 

by farmgirl1 on Nov 21, 2009 at 12:28 pm

Hi Nafus,
My husband is 38 and finished treatment in March. He had stage IV, and had radiation and chemotherapy.   It took him several months to get his eating back, we took out his PEG in June.  As a wife, it was hard to get him to eat, he forgot that it could be pleasurable.  Pain and difficulty with swallowing would prevent him from eating much at first.  He had to start with small meals (sometimes just a few bites of pudding) and supplement with the "tube food".  I had to remind him to eat throughout the day, which was hard since it took so much energy to eat, was still so painful to eat and he would get very  frustrated.    He had to eat soft foods and to this day he still has trouble eating meats or anything that is "dry" like bread.  He has to drink tremendous amounts of fluids to get his foods down, going out to dinner is always a challenge.  It takes him a while to get his food down, so he has gotten used to eating food cold and I have gotten used to hanging out with him for 15-30 minutes while he finishes his eating.  It will get better, I know everyone says that, but it will.  My hubby has gained about 25# since March (he lost 60# during treatment) and is starting to get his tastes back.  Things don't taste the same now as before treatment, but he is learning that eating can be enjoyable.  :)  I wish you both well and I hope he will be able to eat very soon!! :)  Hang in there!

by nafus0915 on Nov 22, 2009 at 8:11 pm

Did anyone have the Ethyol shot to try and save the salivary glands?  My husband did everyday before radiation but we do not know if it worked yet due to him still having the mucous.  Just wondering if anyone has had success with that.....

by kstover1 on Nov 13, 2009 at 7:13 am

 
Roxiwen
I don't have a doctor to suggest but do have some info that you might find helpful. I have kept a spreadsheet on all the cost associated with my base of tongue cancer. I have paid $3500 and my insurance company has paid $94,000+ for a total of over $97,500.00 (U.S. dollars). I'd be glad to send you the excel spreadsheet, it also has dates so that you see how long the process is. My treatments were completed on Sept 16th 2009, so my info is current.

by darrasps on Dec 14, 2009 at 11:31 am

Hi Roxiwen I went to (sylvester.org.) Univ. Miami Sylverster Comprehensive Cancer Center. Dr David Arnold/ Dr. Luis Raez 4 years still here. It was rough see above comments to zog22. It worked for me! Peter

by mcshade on Mar 4, 2010 at 8:13 pm

Kevin
If looks like my cancer may have reoccured and the radioactive seeds process has been mentioned.  Can you tell me more about it?  What does it entail?  Where did you have it accomplished? etc?
Thanks
Bill
 
 

by jeb54321 on Sep 26, 2009 at 8:44 am

Hi!  I have a leathery tongue when I wake up in the morning, which, as frustrating as it is, helps me sleep.  But I've found that if I moisten a washcloth with warm water, and hold it in place with an outpatient "flu" mask (and sleep sitting up), it keeps me moist.  Unfortunately, it also means I continue to salivate at night.  It's a tradeoff I tolerate.  I also run a warm mist humidifier.  Salagen unfortunately made me nauseus.
Good luck!
Jim

by catlover52 on Dec 15, 2009 at 10:59 pm

Reading your post has given much hope as my brother-in-law has same diagnosis as you had (tonsil/tongue, 2 nodes Stage IV). He just had 1st PET scan since treatment (chemo & 35 radiations) & dr saying it's "inconclusive" due to "something" - a shadow showing near original cancer site. They said it could be anything but that he needs to have a biopsy. I think he'll have it tomorrow. It's just so uplifting to read stories like yours as they offer so much hope just when one thinks the shoe is about to drop. How wonderful that your strength is returning and you are enjoying life once again! Best to you & to my BIL too!

by jeb54321 on Sep 26, 2009 at 1:22 pm

I hope you are well past your nausea issues.  My doctor told me that nausea (not pain) is my achilles heel.  During treatment I got Emend but I still had to supplement with Compazine and Ativan.  After the Emend, I switch back to Zofran, and between all that and pain meds, I limit the vomiting to once every few days.  Keeping a regular schudle has worked best for me.  Hope to hear you've recovered completely soon!

by jeb54321 on Sep 26, 2009 at 9:13 am

I'm no doctor, and hopefully you've already resolved this issue, but my *impression* is that only a biopsy which physically assesses the cells themselves can determine if the cancer is of a malignant type.  Scans show how much, how active, etc., but physical exams the exact nature of the cells themselves.  I found this web page useful: http://www.cvm.tamu.edu/oncology/faq/questions/cancer02.html