Wife Has Tonsil Cancer

Hi Roger,

A clean PET Scan sure was a good Christmas present. Congratulations, I am very happy for you. I am going for my third post treatment PET on Jan 2nd. Keeping my fingers crossed for another clean one.

I know what you are going through with the dry mouth. Mine has been dry since the end of treatments. There are some things that activate my saliva but it is short lived, maybe ten minutes at the most and then dry again. It is not easy to wash everything down with water because water does not have the slimyness of saliva and sometimes goes right past what you are trying to swallow. Plus it is a lot easier to choke when you have food in your mouth and then try to drink water. Have to be very careful. I try to eat foods that have their own lubricant or get slimy with water. Plus, it is harder for me because I have no teeth. Hopefully that will change in a few  months, April to be exact. That is when I am going for impressions.

I don't know if I will ever salivate again. Get mixed responses from all my doctors. One says it will come back within two years, another tells me that it should come back but then it may not and then another one, very rudely says, what would you rather have, a tumor or no saliva, you had to make a trade off, one for the other. Don't like that doctor very much.

I have noticed that swallowing has become much easier as time goes on.I am able to swallow a greater variety of foods and larger pieces. One doctor told me that it takes about two years for all of the swelling in the esaphagus to completely go down. Then swallowing should be normal except for the no saliva thing.

I guess that with our type of cancer, post treatment functions become a wait and see situation. So, I will wait and see what happens as time goes by. The best thing is that we are alive to do that.

Again, I am happy to hear about your clean PET Scan. I will let you know the results of mine when I get them.

Keep up the good recovery.

Paul

Paul, I am anxious to have your reply regarding your last scan.

I wasn't aware they pulled all your teeth.  My doc wouldn't start rad. treatments for the type of problem we both had until the teeth were extracted.  He immediately sent me to a dentist which sent me on to an oral surgeon.  Oral surgeon indicated this guy has to much jaw bone and etc. and will take way to long to heal.  Fetl teeth are in good shape, and better not pull.  However, doing treatment they watched them like a hawk looking for prey.  I see where the Nascar driver Bobby Hamilton was 49.  The report I get he was doing fine and scan showed no problems.  However, according to what I read there was a tooth cavity with bad cells which wouldn't show on the scan.  He passed away this week. He was from the Nashville, TN. area.  His treatment at the Vanderbilt Hospital in Nashville was about the same time as mind.  Now I sure understand why many docs feel teeth should be extracted prior to rad. for at the time removing all my teeth were not what I wanted to hear.  So far I havne't had any problem with teeth. 

I have really appreciated hearing back from you since we had pretty much the same problem.  You have been an excellent spring board for me.  Misery loves company. 

I am wondering how Linda is doing since she apparently completed the treatment.  We both are fully aware this is now the tough time for her.  I am sure we both will never forget the recovery time. 

Will await your reply.

Roger

Hi Roger,

When I went for my PET/CT I gave the receptionist my fax number and told her it was one of my doctors  and asked if they could fax the results, gave my wife's maiden name as the doctor. Well, they did fax the results to me. BIG MISTAKE. After reading the results I was sure that I had recurrence of my cancer and immediately made an appointment to see my ENT. Here are the results:

Moderate increased tracer accumulation in the anterior tongue which is symmetrical and bilateral and presumably related to physiologic activity. Correlation with physical examination would be suggested to exclude the possiblity of underlying neoplasm in the anterior oropharynx at the floor of the mouth. No other abnormality identified on PET/CT SCAN.

Saw my ENT on the ninth. I was told that I had a good PET/CT Scan. That after physical examination there was no indication of anything wrong or abnormal. The tracer accumulation was the possible result of some mild inflamation in my mouth and nothing to worry about. Easy for them to say. Guess that is why they are the doctors and I am the patient that goes to them for help.

Be glad you didn't have all your teeth pulled prior to treatment. Pulling of teeth is only recommended if the teeth are bad because the pulling of teeth after radiation is extremely dangerous and risky and this is a lifelong thing not just a year or two but lifelong. I recommend to anyone having dental work after radiation treatment to consult with their radiation oncologist and go to a dentist that has knowledge of Oral, Head and Neck Cancer and the after effects of radiation.

Except for the PET/CT scare I have been in seventh heaven for the past month.Went to a Chinese restaurant with my wife and visiting niece and ordered WonTon Soup and Steamed Dumplings. This was the absolute best tasting food I have had since treatment ended. Not only did it taste superb, it was soft enough for me to gum and break up on the roof of my mouth and it just slid down my throat soooooooooooooooooo easy. Needless to say, I have become a WonTon Soup and Steamed Dumpling freak as the Beatles song goes "Eight Days a Week"

Hope your eating has become easier and you are able to eat more things. Swallowing will get easier as time goes on. Try WonTon Soup. Keep up the good recovery.

Paul

Paul, there is no news like good news.  However, until I read down a little in your e-mail you had me sitting straight up in my chair.

I read recently where you mentioned at times you will show signs of saliva. I am exactly the same way.  Maybe there is hope that both of us over time will regain most of that back.  At least less keep thinking postive.  I keep water close at all times for the dry mouth and throat. 

I still use the feeding tube a lot.  My question is maybe some of my lack of appetite is due to still using it.  I was just wondering if you have any appetite or not?  It seems to be getting a little better.  When I do eat why wife said "it is like a bird", and I feel good that at least I can eat.  Like you mentioned it is getting better, but it sure has seemed it is taking it's sweet time.   Thank god I have lots of time on my hand. Ha I am sure my stomach and probably yours also shrunk from the treatment. Think I mentioned earlier I ended up loosing approximately 30 lbs.  Only gained a couple of lbs back, and that has been just lately. 

Oh, the ENT had given me some medication to clear up a yeast problem in my mouth.  It worked much better than what the rad doc had suggested.  Just in case you need the name it is called Fluconazole.  It took care of the yeast and no problem with myself taking the pill.  Then the ENT gave me a list of food I should kind of watch that isn't the best to be eating to help reduce the yeast problem.  You mentioned liking Chinese food, and on the list is Chinese food which I also love.  Also, it mentions for an yeast probem to stay clear of soy sauce.  However, wouldn't think your Won Ton soup would be included for I really enjoy that soup.  Wonder if one just took a few Fluconazole pills that would permit us to eat the food. Ha. Boy, they sure no how to take the fun out of living I told the doc. 

Went yesterday and the ENT doc put the scope down my throat to check.  It also came back clean.  What they have me doing for a year is to see the ENT one month and the rad. doc the next.  Do they check your thoat with the scope?  The ENT doc will run it thru the nasil passage, and the rad. doc will just do it by the mouth. I told the rad. doc he needs to use the ENT doctor approach which myself is the easiest.  Anway what a life.  At least we are both waking up in the morning.  Roger 

Hi Roger,

Haven't heard about Chinese Food causing thrush before. I will stay alert to that fact, but I cannot stay away from my WonTon Soup or Steamed Dumplings, they are to good and so easy to eat. I never was bothered with Thrush, only thought I had it at one time. Almost forced my doctor to treat it even though he did not think it was Thrush. Used Nystatin liquid for a couple of weeks. Turned out the doctor was right, it wasn't thrush, just the normal radiation side effects. I guess my chances of getting Thrush are lower with no teeth, no place for yeast spores to hide and multiply.

As far as appetite. What's that? Maybe once every couple of weeks I get so hungry there seems never to be enough food to fill me up, but most of the time I forget to eat because I'm never hungry. When I remember, I eat. Even though I'm not hungry I have no problem eating what I can which isn't what I used to be able to eat.. Every day I  drink two cans of the nutritional supplement (Isosource 1.5 Cal) that I was using in my PEG Tube mixed with one packet of Carnation Instant Breakfast for one meal. Gives me about 1000 calories at one shot.

I have had a super taste for a BigMac and finally decided to go try one. To my suprise, it tasted good and I had very little problems swallowing it, even without teeth and saliva. Did have to drink a half liter of water with it to keep from choking. Before Cancer and treatment I could eat four Big Mac's at one time with an order of fries or two. Now, one filled me up, so I guess you are right, our stomach's have shrunk somewhat from using the PEG for some time.

I know what you mean about the flexible larynoscopy. I think all Radiation Doctors are trained at the same place when it comes to using it. Needless to say, they all failed their course. When my ENT does the "Rubber hose up the nose" there is no pain or problem, but when the Rad Oncologist does it you would think the man is a Sadist nothing but pain and gaging. (they both do it up the nasal passage) Now that I think of it, he probably is because he was so thrilled about how well they were burning my mouth and throat during treatment. He kept saying "We are cooking you real good now" I am glad I only see him every four months now and the ENT every three months. Was really bad when I had to see them each every month. The ENT has a PA that would do the rubber hose up the nose thing and then the ENT would do it, was having it done three times a month. Don't know what I'm going to do for excitement now that appointments are spread out more.

Saliva is still a big problem. There are many things that activate my saliva but it is always short lived. Must be that some minor salivary glands still have some function. Like you, I am always with a bottle of water. I have tried Stoppers 4, Oasis, Salagen and Thera a prescription spray, same ole same ole, short lived saliva. The best one for me is Oasis (of course, it cost more than Stoppers 4) it seems to last a little bit longer. There are times that just plain old water activates some saliva but other times when nothing happens. Don't know the answer and the doctors never give you a good answer as to what to expect. Like you said we just have to have faith that our saliva will eventually come back. Enough complaining. As you said at least we wake up in the morning and get to walk on the top of the grass. That alone is enough to be super happy about.

Hope you are eating better and able to eat more things. Sixty-eight more days and I will get impressions for my teeth, but then, whos counting?

Keep recovering strong.

Paul

Paul, is my springboard, and I check from time to time to see how things are with him.  Have you gotten you new choppers yet?  If so how many Big Macs have you eaten?  Just keep the water close by. 

Also, I have been in contact with two or three other people with somewhat similar problems.  I have learned they all more less started with what they thought was either sinus problem or a cold. That is how my problems also began, and just wondering if this also happen to Paul. 

I seem to be doing pretty good.  However, they want me to keep the peg tube until I can do a little better job eating which probably is a good idea.  I also found that Oasis to be the best, and get it in the spray.  I see one of the doctors again next week.  If I recall he mentioned he could prescribe something to help that dry mouth.  Will ask him if that is correct, and if so will tell you what it is if it does help.  Like you that is still a problem. 

Paul, hope this does find you making progress, and my thoughts are with you on the recovery.  Roger

On 3/3/2007 Skippy wrote:

Paul, is my springboard, and I check from time to time to see how things are with him.  Have you gotten you new choppers yet?  If so how many Big Macs have you eaten?  Just keep the water close by. 

Also, I have been in contact with two or three other people with somewhat similar problems.  I have learned they all more less started with what they thought was either sinus problem or a cold. That is how my problems also began, and just wondering if this also happen to Paul. 

I seem to be doing pretty good.  However, they want me to keep the peg tube until I can do a little better job eating which probably is a good idea.  I also found that Oasis to be the best, and get it in the spray.  I see one of the doctors again next week.  If I recall he mentioned he could prescribe something to help that dry mouth.  Will ask him if that is correct, and if so will tell you what it is if it does help.  Like you that is still a problem. 

Paul, hope this does find you making progress, and my thoughts are with you on the recovery.  Roger

my brother was diagnosed with stage iv tonsil cancer with 2 lymph nodes affected   hpv16 type   he started chemo on oct 26 and radiation the next day  decided against the surgery and is scheduled for  Cisplatin x 3 with concurrent IMRT x 35, (50 Gy)

the main problem right now is that it is affecting his hearing  which he has now been told is irreversable

has anyone else dealt with this and found a solution?