Hello everyone
I finally have some dates
I will be starting seven weeks of radiation plus a regiment of chemo on Jan 2 03 I will be staying in the hospital but only overnight because chemo (cisplatin) will last about 5 hrs and make me sick. I'll have chemo once every 3 weeks for three treatments and radiation every day for seven weeks doctor said that should hopefully do it. And around Jan 17 will be having surgery to install a feeding tube In my stomach that will stay in for about 4 months, it will be a rough start to 2003 but with faith from all of you I will get through it. I'll stay in touch and try to share my experiences with you all.
God Bless
Ray

Raymond it is a long journey to take but you seem to have alot of faith and that can take you along way. I hope everything comes along ok. I am curious though my husband had Chemo for 6 hours and 48 radiation treatments everyday but weekends and his Chemo was every two weeks and they never put him in the hospital or gave him a feeding tube and he had some real strong Chemo the same as you and F five and something else and he only seemed to get headaches not nausea or anything Cisplatin and 5-FU AND Paclitaxel just wondering why they would do that? All though I wish they woudld have given him the peg because he lost alot of weight and because he has and office job he would go to work most everyday except when he got Chemo sometimes he would miss the next day because of the headache. You will be in our prayers.

Raymond,

I went through a similar treatment course with Cisplatin and radiation. Just a word of advice....take the anti-nausea medication. The chemo made me sicker than I ever had been in my life. Some people told me to start taking the meds 24 hours before my first chemo treatment. That really seemed to make a difference. Also, don't be afraid to speak up if one type of med is not working for you. They had to put me on stronger meds to stop the nausea.

You're lucky that you'll be staying overnight in the hospital. I used to have to spend 8 hour days getting the Cisplatin and then had to drag myself home. It was not a fun time.

I'll keep you in my prayers. It's not as bad as it seems. Once you get through this challenge, it's all down hill. Keep hope in your heart and you'll come out great!

Raymond......thanks for the update. I, too, had both cisplatin and 5fu. I was hospitalized because my chemo was a 5 day 24 hour drip, with radiation continuing everyday while I was in the hospital. One thing I wanted to mention is that you need to pay close attention to any hearing loss or ringing in the ears. If you experience either of those symptoms let your oncologist know ASAP so they can change either the dose or the chemo chemicals. You COULD experience a permanent hearing loss if don't mention it. Even though this is a tough treatment regime, it is doable and you will get through it. Continue to keep us posted. Sincerely, Donna

Good deal, Raymond! Having a definite schedule is a step in the right direction. Two important points have been mentioned here. First, follow nettypoho's advice about the anti-nausea drugs. I found these just about knocked me out, and people later repeated to me conversations we had of which I had NO memory, so do get someone else to drive you home if you are on these. Secondly, pay close attention to Donna's advice about hearing changes. That happened to me and fortunately, the chemo doc recognized the symptom for what it was and switched drugs. As he told me, they didn't want to cure my cancer by making me deaf. This happens in less than 5% of patients, but it is something to keep in mind. Finally, the seven weeks seemed to go pretty quickly for me, and I hope they do for you too. Keep us posted.
Joanna

Well here I am I've managed to get through one week of radiation (I

Thanks for the update Ray. It is good to hear that you are doing so well, and feeling even better. And just think: you are 1/7th finished! Keep up the good work, and good attitude, which I think is as important as anything else, if not more so.
Joanna

Hello Everyone
I am now 1 week past my first treatment of cisplatin and 9 treatments into radiation and as you mentioned above I have the ringing in my ears it starts in one ear then both. I was wondering what did the doctor do in your cases what medication can stop this ringing.
Thanks for the help in advance
Ray

Please be sure to tell your treating doctors as soon as possible about the ringing in your ears. While this may be nothing, there are reports of hearing damage during these treatments. Your doctors should be aware of every complication that you are experiencing, as soon as you are aware of it, so they can make the right call...

Echoing what Brian said. Part of my treatment regime with cisplatin is a hearing test by an audiologist every 2 months. They did a baseline hearing test on Tuesday. They told me to report anything out of the ordinary to my oncologist immediately. If you are hearing ringing they may change your chemo to something else. Cisplatin can cause deafness in a small percentage of patients.

Hello again
Sorry I have not posted in awhile but I

Hi Raymond. Perhaps my experience can boost you a bit. The tumour on my left tonsil responded very well to the radiation and Cisplatin. It decreased significantly about two to three weeks after radiation started but the lymph nodes on my neck (two big ones) responded more slowly. Even after completing the whole treatment, I could find the lumps there and I also felt discouraged at that time thinking that the therapy had little effect. It was my oncologist (I guess based on his experience) who comforted me that the shrinking would take time. It was two months post treatment that I had MRI , ultrasound, and CT scan to confirm the status of the neck tumours. The tests could not detect cancer cells in my tonsil and neck area. So surgery was unnecessary. Raymond, be patient and cheer up.

Karen, stage 4 tonsil cancer diagnosed in 9/2001. Concurrent radiation and cisplatin.

Ray,
Hang in there buddy. You have come to the hard part, and for me, it got a little harder once the radiation treatments stopped and I was hanging around the house, after being treated twice a day.
It does get better...it just takes a little time.I know that you have a lot of faith, so try and keep the faith.
Once the treatment ends, try and find a support group or a CancerCare organization that will send you a mentor. I found a local organization that offered 6 free sessions with a private psychologist/counselor for cancer patients. Also consider getting anti-depressants if it gets really bad.
Take care Ray,
Danny G.

Hi Raymond,
I hope this post finds you well and improving. I am right behind you. I'm getting IMRT radiation and Cisplatin (x3). I am only 1 chemo and 7 rad treatments into it.
Did you get IMRT or XRT?

Gary........How is everything going? Did you find out about SSDI yet? Keep us posted when you feel up to writing. Sending good thoughts your way. SIncerely, Donna

Be strong raymond, we are all supporting you and wishing you well.

If it is any consolation, in my own case I did not have significant node size reduction by the end of radiation treatments. When I had the neck dissection to remove the suspect nodes, the biopsy of them after surgery showed that they were all cancer free. The radiation had killed everything. So size is not the only indicator of the removal of the cancer, and nodes which are cancer free after radiation, can still show positive on CT scanning.

Hello again
Happy Valentines Day

I am having my LAST radiation on Monday 17 03 that

Raymond,
Congrats on almost being finished with treatment. I don't want to rain on your parade, but a little word of caution. The radiation keeps working on you after treatment ends, and the hardest part of my entire ordeal was the first couple of weeks after treatment ended. I felt bad, probably missed the daily routine of going to the hospital for treatment, and got depressed. Fortunately that is when I discovered this forum, began taking daily walks, found a support group , and quickly got over it.

Best of luck to you,

Danny G.

Danny's post is very accurate. I would like to add that while I too was interested in avoiding surgery, in retrospect I am glad they did the modified neck dissection and took out any nodes that still showed up on the CT. You've come this far through the worst of it. You want to be sure that every bit of this thing is gone. Compared to radiation, the surgery ain't nothin....

Danny, you had been very lucky to find this forum soon after treatment. I didn't and the severe depression invaded gradually three months post treatment.I was overjoyed when completing the last dose of radiation and then was expecting a gradual recovery. People around me kept on saying the same words at my ears that you looked very normal, the mouth sores would disappear very soon and dry mouth was not a problem because they also felt their mouth dry at times, they also had mouth ulcers... They tried to put themselves in my position but it's useless because they could never feel the way I felt. They never understood how one felt when the saliva glands were destroyed.Anyway my depression is over for the time being and it is really very very important to have support from people who have gone through similar ordeal as we have. Raymond, best of luck to you.

Karen, stage 4 tonsil cancer diagnosed in 9/01 with concurrent radiation and cisplatin.

All Done,
Yup 1 week post treatment, longest time of my life. and the node in my neck is shrinking it has gone down to approx half it's size and all the burns on my neck are healing very nicely can't open my jaw to wide or eat drink anything. Still a lot of pain. I have a few of those sores people are talking about on the side of my cheeks and tongue from radiation what is it best thing to do for these Because this is my main source of pain and if someone could let me know what was the best thing to use to dry up the mucositis its like a tap in my mouth.
Thanks everyone

Ray

Ray,
I don't know much about mouth sores, but I am very familiar with the mucositis. There is nothing that you can do about it except wait...in time it goes away. One of my docs ordered me a Yankauer suction machine that works like the suction device at your dentist. I kept it by my easy chair by day and at bedside at night. Anytime I left the house I carried a plastic bag with a box of tissue in it. The mucous often caused me to wake up at night..I would switch on the machine,use it, turn it off and go back to sleep.
Now, 5 months or so after radiation treatment ended, I am returning the machine. I can make it through a whole night with maybe one or two tissues.
Unfortunately about the time that the mucous subsides, the dry mouth becomes a problem and that wakes you up at night! But as you might have read here there are strategies for dealing with that problem too.
One step at a time...keep up the good attitude.

Danny G.

Hi Raymond, Danny G is right that there is nothing you can do with the mucus.I consumed a lot of tissues even a month post treatment. My husband thought that I was a tissue eater (grin).I needed to spit a lot and I didn't feel a significant dry mouth. When the mucus gradually disappeared, the dry mouth became dominating. Mouth sore would get better slowly but it is still with me now. Pain medicine helps to make you feel better and in my case, I stopped using it about one and a half months post treatment and have never used it again for the same reason.

Karen, stage 4 tonsil cancer diagnosed in 9/01

Raymond, perhaps my stragegy to deal with the wallpaper paste mucous I had will help you. First of all, it seemed to run almost continuously for exactly 21 days, at which point it just stopped, then reappeared at ever increasing intervals over the next week, then stopped for good. Two things I learned: 1. Puffs brand tissues are the strongest and the very best for wiping out your mouth. I used so many I wish I had bought stock in the company. 2. To sleep while this stuff was pumping out of my mouth, I bought rolls of gauze and made loose rolls, which I stuck in the "gutters" of my mouth. This would soak up enough of that stuff to enable me to get a couple or three hours of sleep, in a semi reclining position. This is also how I went out in public. I had some truly nasty neck burns, but the drugs took care of the pain related to those, so this mucous was seriously the worst part of the entire treatment. I want you to know that it definitely will stop. Just not as soon as we all wished. Hang in there!
Joanna
P.S. One last caution. Your mucous is water based, so make sure you take in extra fluids when you are putting out so much.

Hi Raymond congratulations on your progress and ned of treatment. I an right behind you with 14 rad treatment to go. They decided to shorten the cisplatin to 2 because the tumor responded so well. The second cisolatin was very hard. I had it on the 18th and have had delayed vomiting ever since. I eliminated tongue and mouth sores by insisting on a teeth protector - it worked and my tongue and mouth sore are already healed up.

Hello again to everyone
I am now three weeks past my last radiation treatment I still cant swollow or eat anything much I mmanage to get a couple of mouthfulls of water in but thats about it. I was wondering how long it tool most of you to start eating again and what did you eat or drink at the end of all the treatments. any tips on what to try will help alot. I am getting very fustrated that I cannot drink or eat. I still have a lot of white mucus and some welting on the soft pallet throat and tounge this is what is causing most of my discomfort. I also seen the radioligest and it sounded like he was planting the seed for a operation he said that the node in my neck has shrunk to less than 25% of it's originiol size but it's not as small as he would like it said it has to be gone and we will wait a few weeks more and decide on the surgery. anyway if any one could tell me what they started to drink or eat after radiation to give to give me more energey it would be great Thanks for all your replys
Ray

My radiation was completed at the end of Nov 2002 and I had a medical food called "FiberSource HN" which was the liquid they fed me when I was in hospital during the surgery. The difference was that in hospital I was fed throught nose tube, at home I just drink it. My Radiation doctor said it was the best nutrition I could get.

I started to eat normal food in late Jan, but I had hyperbaric oxygen treatment which expedited the healing of radiation wound, so it is a different story.

Raymond,
You have to be patient. I finished radiation treatments around Sep 6th and have only been eating for about a month, since I had my esophagus stretched. It is different for everybody, but it was close to 5 months before my throat was not too sore to attempt to swallow anything but pureed noodle soup.
Now that my throat is much more healed ( and my esophagus has been stretched twice...which is not necessary for most people ). I can eat fish, Rice Krispies, cheesecake, spaghettiO's, baked sweet potatoes, thicker soups, and other soft stuff.
However eating is still not easy and I can only eat small portions. I had a new PEG put in yesterday and I still use it as well as eat a few things and drink a lot of Ensure Plus.
Best of Luck,
Danny G.

Danny...I like your list of new foods! Sounds like you are doing great. You are only a few months away from the really great eats... But it is good to see that you are not PEG dependent anymore.

Raymond, I finished treatment in Dec.01 and three weeks after completion, I was able to eat semi-solid food-- congee. It is rice cooked in a lot of water for about an hour and to add nutrition to it, you can put meat or fish in the water. Of course I couldn't eat the meat but it was good enough to maintain my weight for a while.As regards the mucus, it would gradually disappear and one day you would discover that you don't need any more tissue paper. About your lymph node, I think the radiation is still having effect on shrinking it. Two months after treatment, I could still feel the lump on my left neck but when I had the scans, the report said it could not dectect cancerous cells and so operation was not recommended.Make sure all the necessary tests are done before further action.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Brian,
As usual, thanks for your support. I am still using the PEG about 3 times a day. My Rad. Onc. thinks that I should try to get off of it soon, but it seems that I am unable to eat very much volume so I still keep using it and then try to supplement it with food. I really don't know if I should skip more tube feedings and try to eat more at this point. I did talk to a dietician at MDACC but she was not that specific about how to do it. I seem to drink more Boost Plus and Ensure Plus rather than eat a lot. Any suggestions?
( I won't feel really back to life until I can get rid of the PEG and have the freedom to travel and eat in restaurants).
Danny G.

Hey Danny, Sounds like eating is getting better and better with each passing day! What good news! I felt exactly the same way you're feeling right now about not getting the PEG removed until I felt I could get enough nourishment without ever using the PEG as a back up. I probably kept the tube in longer than I should have, but the peace of mind knowing that I was able to subsitute if I had to was worth it to me. It's been a long haul for you in terms of food intake and I'm so glad you're finally able to not only eat, but enjoy the food too. Great news! Sincerely, Donna

Danny,

Brian is right. A couple of months from now you will look back and see how much you have progressed. We finished treatment about the same time. I started eating in Dec 2002, and tomorrow I get my PEG tube out. At first I could only eat small amounts and gradually was able to eat more (quanity and variety).

It still takes me a long time to eat a meal, but I am able to eat enough to maintain my weight. When I started eating, I monitored my weight and gradually back off the tube feedings. If I started to lose weight, I increased my tube feedings.

Tom,
Just today I ate two meals out. I feel like it was a real breakthrough and I hope to be trashing this PEG real soon. I am scheduled for my third esophagus stretching in a couple of weeks, and I may have to continue doing that, but who cares? If I can eat in restaurants...I feel like a free man who can travel, go out to dinner and have a life!

Thanks for all of your support guys.

Danny G.

Digtexas
Good for you I feel so fustrated that I cant eat only one of us would know. you went out to eat where did you go? what did you eat? do you do anything to freeze your mouth before you eat? any pain? I have to try to eat Its driving me crazy I have always had a large appitite I went from 183lbs to 135 lbs I look to skinny its depressing anyway thanks for all the support in this forum this has been a very good thread for me I look forward to all the support and answers from you all
Ray

Ray,
Hold your horses, please! Patience is required. You are still in treatment and mine finished around Sep. 6, 2003, some six months ago. It took me months before I could swallow broth, much less a meal. Having said that, now I am able to eat baked sweet potatoes, some pasta, cheesecake, chopped beef baked potatoes, thick soups, yogurts and puddings, rice krispies,etc.

However I can only eat small amounts and am still using my PEG and drinking a lot of Boost and Ensure Plus.

Hang in there Ray. You are doing fine, but for me, at least , it has been a slow process.

Danny

My husband presented with ear aches, when he went to the dr,he first was given antibiotics, and then after a few weeks, went back, then sent for cat scan, cat scan showed tumor, so on to the ent, who did mri, and then biopsy, diagnosis is squamous cell carcinoma of R tonsil, and soft palate, aprox 5 cm, lymph nodes enlarged and thougth to be involved, they think stage 4.
We have gone to three consults now, and gotten several opinions, the last being from Sloan Memorial,from the chief surgeon at the head and neck clinic, his ipinion was.. no surgery, but radiation and chemo, I was suprised, because all that we read suggests that surgery and radiation are the more common treatment, and yet this was a surgeon..We are scared, we want to make the right decision, we respect Sloan Memorial and the drs, there, but would like to hear if anyone else has been treated this way, and how it worked.
also, is it better to go to Sloan, which is about 100 miles from our home,or better to go to a local treatment facility? We want the best chance, like every one here, i am sure.
None of the drs, made metion of what to expect as far as prognosis, we do not even know how many stages there are, only that he is in the4th, any help would be appreciated.
thank you.
joansie

Joansie, hope my experience gives you some idea.I was also diagnosed with stage 4 tonsil cancer by an ENT surgeon after MRI, biopsy,etc. The treatment option I was given was concurrent radiation and chemotherapy. Surgery was only necessary if tumors remained after treatment. In my case I didn't get any operation because treatment was effective. For staging of oral cancer, you can refer to lots of information in this website. As far as I know, when the primary source of cancer is tonsil and spreads to neck lymph nodes, it is usually classified stage 4.The size of tumor may affect staging too. Do check and your doctors should be able to clarify your doubts.Don't worry, your doctors would tailor a set of treatments to the best of your husband.Many people here have similar type of cancer as your husband and they can definitely offer help.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Joansie,

So sorry to hear about your husband. This is a horrible disease, but you are taking the right steps in getting several opinions. Just don't take too long to decide what to do. Stage 4 is the worst because there are only 4 stages. If the cancer is already in the lymph nodes, time is of the essence. It can spread very rapidly through the lymph system.

You must weigh the pros and cons of all the opinions, but if the chief head and neck surgeon at Sloan-Kettering is saying no surgery, I would lean very heavily in that direction. I would also recommend going to Sloan for treatment. No matter how good your local doctors are, I feel it is much better to be treated where all the doctors are working in tandem.

If you scan back through some of my posts (just click on the number at the bottom of this post), you can read some of what my daughter has gone through and get a feel for why my opinions are the way they are. Of course, you must keep in mind everyone is different and what works for one person may not work for another.

Briefly, my daughter had stage 4 base of tongue squamous cell cancer. She had surgery and radiation. Chemo wasn't recommended, so she didn't have any. Her surgery was done 9/4/02, radiation was finished 1/3/03. She has just this week been diagnosed with a recurrence. This tumor is larger than the first one and is growing rapidly. Her only chance now is chemo and it is a very slim chance.

If we had it to do over again, she might still have had the surgery, but SHE DEFINITELY WOULD HAVE HAD CHEMO WITH THE RAD. We will never know if going that route would have prevented this recurrence, but I sure would recommend it to others, especially since a surgeon is also recommending it. The chemo supposedly will destroy any micro metastases that may have already developed. The cancer was in 4 of my daughter's lymph nodes and the chemo should have been done. The doctors had no way of knowing if any cells had gone beyond the nodes in her neck. I'm having a hard time trying to make sense of the fact that she was discouraged from having chemo.

Some people might remember that at one point, I said that it was good that Heather didn't hace chemo because she was having such a hard time with recovery. I felt having chemo would have made it even worse. However, it seems that this tumor was probably growing even while she was having RAD and the tumor actually was the cause of most of her problems. The surgeon feels it is the cause of her severe trismus and worse than normal pain. It also is the cause of the fluid pockets she has had and very possibly contributed to her problem with infections. About the only thing it probably didn't play a role in was her stomach trouble with the PEG tube. Therefore, if she had had chemo and the chemo would have killed those cells before they had a chance to form a tumor, she wouldn't have had most of these problems. Of course, this is all conjecture. We will never know for sure, but it sort of all fits together and makes sense.

Sorry, I didn't mean to rattle on. I just feel very strongly about this given my daughter's condition. If the cancer is in the lymph nodes, chemo should be in the treatment mix somewhere. Chemo alone is not the answer, but should be included in the treatment.

Rainbows & hugs,
Rosie

Joansie,

I too have tonsil cancer with neck mets - and liver & bone mets. The only reason surgery was really done on me was to find the primary...I had surgery and radiation. 7 months after radiation finished they found the liver and bone mets.
I am on chemo now, and they feel that treating systemically will take care of both liver and bone and any other cancers. One can hope!!! I was told they wouldn't do chemo at the time because they felt the stress to the body with radiation was too tough. I don't believe that. I think it's tough, but I also believe I wouldn't be where I am if they would have done both???

Sloan is one of the top 2 head & neck centers in the U.S. MD Anderson being the other. Stay at Sloan where you can get multiple doctors and opinions all in one place, you are so lucky you're as close as you are.

Please come back and keep us posted. This is a great group of people and we'll be here for you as you go through this.

Take care,
Dinah

Rosie, I am so sorry to hear about Heather's re-occurance. What terrible news to hear, and know that my thoughts and prayers are with both of you - as well as to everyone here. I think it's safe to say that most people put a lot of faith and trust in their team of doctors who are treating them - and if a doctor recommends against chemo, we trust they know what they are talking about. From my personal experience in my husbands treatment - chemo and radiation were both recommended for his stage III/IV scc. The combo did quite a number on his energy and lifestyle - but looking back, I am so glad it was done. I was told that radiation is necessary to shrink the tumor, but the chemo is basically what stops it in it's tracks from spreading. Although I certainly am not a doctor - I can't see why any Physician would NOT recommend both for a later stage cancer - along with possible surgery, unless the cancer is still in it's very early stages. When my husband Johnny was in the hospital getting the chemo - the "chemo doctor" came in one day and told him...."Y'know, this may not help you at all"! When I heard this statement from my husband - I was appalled! Knowing my husband was just starting his treatment at that time - and the level of fear we were both experiencing - it never ceases to astound me how some doctors can be so insensitive and downright negative. As it turned out - my husband proved the doctor wrong - the chemo along with the radiation DID help - as of my husbands surgery last month, he has been declared "cancer free" - and I thank God for that. Although I know he is still not "out of the woods" yet - I always like to hold onto hope - and Rosie, although things may seem hopeless at this time - be strong and keep the Faith - miracles can and do happen all the time. God bless you and let us know how Heather is doing.

When my husband was undergoing his chemo (x2) and radiation (x42) he also had the symptoms that all of you have described. He was strictly a meat-and-potatos kind of guy. Not being able to eat what he really wanted did a number on his weight and overall outlook.

One day while he was receiving ethyol, before his radiation treatment, I picked up a cancer cookbook that happened to be on the nurses' desk. In it I found a miracle! I prepared this milkshake for him once a day and actually had him MAINTAINING weight during and slowly GAINING weight shortly after treatments ended. (Dennis had a PEG tube, but never used it thanks to this drink) When the radiologist found out what I was doing, she had me fax the recipe to her, and now hands it out to all cancer patients in her care.

Dennis called it his MEGA-SHAKE:

Blend together:
1/2 cup whole milk
1/2 cup half-and-half
2 cups ice-cream
1 TBSP malted milk
2 TBSP Ovaltine
1 package Carnation Instant Breakfast

This provides 1300 calories per 20 oz. serving. I have the stats on protein, etc. if anyone is interested somewhere in my files. I now fix this thing in my sleep! Dennis is now 4 months out of radiation and chemo, but still likes this on his "bad" days.

If you like sweets (which we've found out is the last sense to come back) you will love this one.

I hope this helps.

Mandi

Mandi, good tip on the "Mega Shake"! What struck me in particular was the Ovaltine in it. My husband basically survived on chicken noodle soup (w/VERY thin noodles) and glasses of whole milk with Ovaltine mixed in it. It helped to keep his weight fairly stable - but it didn't help with his severe phlegm problem at the time. (it still is bothersome now and then). But I will print out this recipe - I'm sure it will be helpful to my husband and to anyone who is having a hard time eating and maintaining their weight. Thanks for sharing this recipe with us!!