As a way of intro, I (52 yr old male) was initially diagnosed with tonsilar SCC in May of this year. This is after having sucessful Colon Cancer removal and colon resection in March of 2002. (The Tonsilar Squameous Cell Cancer - SCC- is a second primary cancer, unrelated to the colon cancer)

This being my initial post, I will apologize in advance for the length.

There is some disagreement on my tumor's stage but it's more than likely a IV. (There is a question of whether it has metasized into any lymph nodes). My initial consultation with a local medical oncologist resulted in a very brusque and minimal prognosis discussion while outlining his treatment recommendation of 5-6 months of cis + platnium chemo (4 days/month - 24 hrs drip) plus 6 weeks of radiation ASAP without much discussion of any other aspects or issues ("...maybe 6-months to 2-3 years life expectancy...").

While waiting on an appointment with a 'second-opinion' medical oncologist, I was able to get in touch with and confirm that I would be a candidate for Proton Radiation treatment at Loma Linda Medical Center here in southern California (They have a good website at: Loma Linda Medical Center - Proton Radiation Therapy ). They have URL Links to the other Proton Centers at Harvard and in Indiana as well as the other facilities in other countries.

Since there are no direct comparative studies, the second opinion medical oncologist stated that I would be justified in going with either treatment approach. From what I've been able to research on the web, chemo w/ cis + Platinol and RAD seems to have between a 20 - 60% two-year Stage IV remission while LLUMC has indicated they've had about an 80% two-year remission with their standard + targeted Proton RAD approach albeit with only 50 or so similar H, N&T patients.

I started my Radiation Therapy regime at LLUMC on June 20th which consists of once a day - 2.2 cGY of 'standard' radiation for 28 weekdays (about twice the normal radiation dosage) and will begin adding an afternoon round of targeted Proton Radiation dosage of 1.1 cGY for the last 17 of the 28 weekday treatment sessions.

For those who are not aware, Proton Radiation allows for the radiation to be specifically targeted in all three dimensions; that is to say, they can target most all of the radiation's ionizing effects within the tumor mass with minimal collateral damage to healthy tissues. LLUMC is one of only two-three facilities in the US that have a medically designed system for Proton Radiation Treatment of some cancers. They have had great success with the Proton Radiation Tretment for some cancers.

I'm curious as to whether any of the BB's subscribers have been through the Proton RAD regime before. I'll keep the BB apprised of my treatment progress as I am fast realizing the issues of the unknown can be alliviated, to a large extent, by discussions with those that have 'been there, done that...'

Thus far, today will be my ninth 'double-dose standard' radiation treatment. The rad effects, thus far, seem to be like a 'flash' sunburn reddening of the skin that goes away in a couple of hours. The treatment lasts 5-10 minutes since it takes 3-7 minutes to put on the head mask and get aligned on the table.

The radiation is dosed at 30 seconds on each side of the neck and 60 seconds face on. The effects of saliva gland impact was initially noticed after the second treatment. Thus far, after eight RAD treatments, my saliva glands are probably 50-60% impacted and I've begun to notice the lost of most of my taste buds. I tried the Salagen tablets for generating saliva but they made me nauseous so I've discontinued them for the time being.

On the issues of dental health, this is a big long-term issue. There is a great product that my dentist recommends called Biotene that includes products for toothpaste, Mouthwash, Gum and a Gel that does work. web page for Biotene Products to help with Saliva and Dental Health

The issue of dental trays, as has been explained to me, is to have them made 2-3mm thick to help with minimizing the radiation scattering (I have a lot of metal fillings) and to allow for ongoing Flouride treatment at night. Whether this will have any favorable effects with possible TMJ/Lock Jaw remains to be seen.

Thus far, I have been able to maintain a fairly normal life including continuing to drive, work, play etc. I have had some episodes of tiredness and am working hard to maintain my weight. (I lost 20 pounds due to the colon cancer/surgery and am trying to get them back) The dietitian has me on a 2000 calorie and 100 gram protien diet using Boost Plus that seems to be working. The lost of the taste buds and beginning of soreness in the mouth are beginning to impact my eating.

Well, its getting close to the time for my daily 50-mile one-way drive for my 2 minute Rad treatment. Feel free to inquire.

Telecorder,
sorry to hear about your illness, but glad to hear you are enduring the treatments seemingly well. RAD can be brutal! It's great that you still continue to work, drive, etc.
Good luck with your treatments, and keep us posted....this is a wonderful place to come for advice, support, or venting!!

Hi Dave,
I'll be starting IMRT with chemo in a few weeks for a stage 3 SCC on the right tonsil. It was diagnosed as a polypoid tumor, which are the most common form of colon cancers as well. Thanks for your info on proton therapy I am going to ask about that on Friday when I meet with my radiation oncologist. I am sure that would have that available ar UCSF where I will be treated.

Hi Dave:
I also had a series of 40 radiation treatments that started once a day for the first 20 and went to twice a day for the last 20. The regiment used Proton rads, mostly on the last since they kept narrowing my fields. The last 20 maxed me out as far as what they say a person can withstand. I also took Salegen, and still do. Also to protect my saliva glands the oncologist ordered Ethyol treatments before the radiation treatments. The ethyol was given by injection between but just under the top layer of my skin. I had an injection for each day of treatment. The oncologist also wrote scripts for compasine to control the nausea, which worked quite well. It also helped with keeping me eating in the fact I was not nauseated all the time, although the treatments made it difficult to swallow. The ethyol was given by injection during a trial due to the normal way of administering the drug was through IV, but most people were so nauseated they quit taking it. The drug is still being given by injection. Might be worth talking with your oncologist about. The proton radiation worked very well for me in the fact that my tumor was on my epiglottis and very little of it was burned away, but it does have an irregular shape to it. But my vocal cords remain in tact. I still have about half the amount of saliva I used to and my taste is improving but doubtful it will be normal again. My treatments ended July 31, 2002. Just had my check up with my surgeon and everything is clean to date, will now go to every 3 months with both the oncologist and surgeon instead of every month.

Mike