Hi Ray,

Last fall I had 6-1/2 weeks of radiation (both sides) for tonsil cancer (I first had surgery which removed the tonsil and many lymph nodes on the left side of my upper neck), with a daily Ethyol shot and weekly chemo (cisplatin and Erbitux).

I would highly recommend Boost Plus (or equal) rather than milkshakes due to greater calories with less volume. I had typical eating problems, then settled on 3 identical meals per day, each consisting of 2 Boost Plus (360 cal each), egg-beater omelet with cheese (sometimes added cut up ham lunchmeat), and tea with honey - about 2700 calories per day. I used less than 1 tsp of the magic mouthwash per meal (I swallowed it), although the eggs went down quite easily. I also used the salt/baking soda mix which was very helpful. I got some topical canker sore medicine from my dentist, but only needed it a few times.

With this diet I was able to hold my weight and avoid a PEG.

Best wishes,

Chris

I have now had 15 treatments. I have found something that really seems to help the sore throat. It is Goodys powders. Within 5 minutes of swallowing down the powder, I can swallow with very little pain.I am not quite sure why this works, but it does for me. I have been able to eat several times a day after taking the powders. Each seems to last about 4 hours.

I have found 2 things I can eat, oatmeal & pancakes. They both seem to go down fairly easy.

My MO at Winship is DR Shen. He seems very good.
I have 2nd chemo on Tuesday.

Ray C

My husband has had 15 rad TX so far and has come to a point that he can not talk and is in alot of pain from the mouth sores. We have plenty of meds but very little response. Roxicet suspension does help a little. He does have a PEG but is so sick that he is barely using it. He is talking about taking a break from rad. Don't know if this is smart. Chemo is tomorrow which I question due to the vomiting along with the sore mouth. We see the Dr today and will report his decision later this evening. Hopefully soem suggestons will be given that will aid all.

Linda & Todd --

You need o meet with your oncology nurse and doctor and get !- adequate anti-nausea relief (what is Todd taking?) and 2) adequate pain relief (what are they giving him?)

Re te nti-nausea, he should be getting a serotonin-uptake-type drug by IV before chemo infusion (probably Anzemet, which lasts for 14 hours) and then, afterwards eiher Anzmet tabs, Zofran (8 hours) or Kytril. (Compazine may be given as well -- both drugs can be taken at same time -- but Compazine is NOT good enough on its own in almost all patients to stave off nausea from Cis- or Carboplatin.) Anzemet, Zofran and Kytril are expensive drugs but they can completely control nausea in *most* patients. Barry told me "they were worth every penny and then some!" Our chemo nurse at Hopkins (in the "chemo class" they give before treatment) said -- "there is no excuse for acute nausea anymore with chemotherapy - we have the ability to control it, please talk to us immediately if we are not doing our job." That having been said, a few patients are not responsiive or are allergic to these drugs and for these they try acupuncture, so this might be investigated if Todd doesn't respond to the usual drugs.

Re pain -- first, make sure Todd does not have thrush (yeast infection) which often crops up at tis stage. It can cause immediate burning pain upon eating, well before the onset of radiation-induced mouth sores. Thrush can be controlled by both oral and topical meds, but usually not eliminated until after end of radiation. You just try to keep it under control...

Mucositis can be helped by GelCare -- or in its over-the-counter form -- Rincinol; a mouth rinse of salt/soda repeated many times a day; a rinse of 5% l-glutamine (get powder at GNC). Wtahc the mouth-numbing solutions, they can numb too much, leading to food aspiration (which happened to my husband).

The main thing is ADEQUATE PAIN CONTROL. Some doctors are really bad on this (here's your bullet, just bite on it...) It is almost certain Todd will need to go onto opiate drugs, either Oxycodone or its timed-release form, Oxycontine. My husband didn't do too well on the former (constipation, sleepiness) and did much better on fentynal patch (Duragesic) -- but folks vary in their reaction. You as care-giver may have to be very vigorous and insistant that Todd get the pain relief that he is due under patient's rights.

This treatment is hard enough without making it worse by inadequate nausea and pain medication. If someone has to stop treatment because of this, then it is (in most cases) a failure of the medical team.

Gail

Oops, saw a typo (actually, several --pre-coffee I'm afraid) but Anzemet lasts 24 hours (not 14) -- sorry,
Gail

Linda and Todd, I'm not sure what kind of chemo Todd's doing but I'm doing cysplatin with a 125mg Emend, 1or2mg Kytril, and dexamethasone 4mg 30 minutes before treatment. This is followed by 1 180mg Emend a day x2 days, 1 1mg Kytril 2xdaily for 3 days, and 2 4mg Dexamethason 2xdaily for 5 days. They also gave me another nausea med that I have not had to take. But I had one week of mild nausea but it seemed coincide with everything tasting repulsive. I just had my second chemo and don't feel ill at all and didn't the first time. Maybe this will help. I wish you luck and I also understand to that even after the last rad treatment you still feel as if you are having them for around two more weeks. I don't know if it is the same midway though treatment. I know I would hate to have to take time off simply because starting back would be mentally stressful for me. I don't have a bit of experience with what you are dealing with except with the treatment. I hope the info helps and the rest is just my thoughts. You both are in my prayers and I hope you get your answers. Lee

Linda & Todd - About taking abreak from the treatments, my son early on in the treatment had such painful sores in his mouth he also wanted to take a break and I worried about whether that was wise, but I got him to at least go and see the doctor about it. When the doctor saw him, he gave him a week long break and then later on another week long break to heal the open and bleeding sores in his mouth. I felt better knowing it was the doctor's recommendation. Everyone reacts differently and towards the end of the treatment it got really bad again, but my son just kept going because he was really tired of having it take so long. It helps to let the doctor know how bad it is so he can try different meds for pain or nausea and you can get any questions answered. Also, they should be aware of what other meds are involved so they don't interfere with each other. Hope things improve and that things get better really soon.

My nutrionist at vanderbilt has given me Carnation instant breakfast VHC (very high calorie) which is good for 560 calorieseach. Only problem is, I cant stand the smell or texture of it. Doc said try a covered cup and a straw. Other than that I can eat through most of the pain so far and have lost only 7 lbs in 3 weeks of treatment.
Hey ray, how are you doing???

Rob seems to have gone from no problems to the worst problems in three days.At present he is choking on thick green mucous he cant take anything by mouth without choking on it and he cant get the fortisip down at all .his mouth is so sore he cant open it or talk.i am just off to ring the hospital and ask for an appointment.