I'm fairly new here, and posted last week in "introduce yourself" with my situation, originally with stage 4 tonsil cancer with neck node involvement in 2009, and 3 local regional recurrences in the left neck since, and now with microscopic cancer with postive margins remaining after this last surgery still in the left neck with Perineural(PNI)and Lymphovascular(LVI)Invasion.

I was offered reirridation with IMRT at 50Gy for 5 weeks, concurrently with Erbitux weekly infusions at Mt. Sinai in NYC and the same with a local RO and MO, but wanted to seek other options due to the total dosage to my left neck would be 110Gy.

On Monday I met with Dr. Harrison, RO, at Beth Isreal Hospital in NYC, author, and renowned radiation oncologist, especially with Brachytherapy, and one of the top doctors in NYC and country. I went there thinking about the Brachytherapy, and he was recommended by another blogger here on OCF, along with this treatment, which is good for reirridation and with less toxicities. I met with one of the assistants first, and gave him my huge volume of medical files, and finally met with Dr. Harrison. You can tell he is an brilliant man, an intellect, and he thought deep when speaking. Dr Harrison immediately said I have a complicated case, and see I had a number of recurrences, that can be difficult to understand. He immediately said he reviewed my history with his associate, and there is only one thing, and one thing only, that can be done, and done safely! Dr. harrison said he would explain it to me first, and then it would be for me to decide. I was unprepared for what he told me.

It's a four part process: 1. Do neck surgery again, clean up any remaining cancer. 2. While the neck is open, do external beam radiation in the operating room 3. Do a flap with the chest muscle, and put the chest muscle on my neck, so there is fresh tissue on the neck 4. Once healed, do radiation on the neck and maybe Eributux.

This is called Intra-Operative Radiation Therapy (IORT), and is only done in a few locations in the U.S. Dr. Harrison is a pioneer with this procedure, invented some devises for this, and has done several studies at Beth Israel hospital and formerly at Memorial Sloan Kettering in NYC. As discussed, reirridation is too risky for the carotid artery, having already done IMRT at 60Gy, and 2 neck surgeries on my neck, and the dosage wanted to be done elsewhere at 50Gy will not be enough to kill the remaining cancer. He also chided me having a network of doctors all over NYC, and said I need a multidisciplinary team with everything done at one location, not all over like previously done..it's a long story.

I like Dr. Harrison and have confidence in him. I met with Dr. Jacobson, ENT in Hae, who does the surgery with Dr. Harrison. He said it won't be easy, and explained the risks, espcecially with my prior treatments..35 IMRT with 70gy, 60-62Gy is adjacent areas, radical neck dissecction and another dissection to levels III and V. he also thinks I have no other choice either since the cancer is microscopic, had 3 recurrences already and just a metter of time before it comes back, and possibly metatastesizes to the organs.

Sorry for the long post! I'm finding out more about IORT on the internet, but would like to know if anyone else knows about this,had it done or knows someone who did or has any other infomration that is helpful?

Thanks.

Paul I am so sorry you are going thru this! It is so much to digest all at once. Many members here including myself have mentioned NCI cancer centers as the way to go. On your first post a couple weeks ago, I gave you a link for the countries top centers. The multi disciplinary team approach with experienced specialists is the way to go especially with your history.

While the decision is ultimately yours to make, we can offer you info, our ideas and moral support. We arent doctors but do know quite alot about oral cancer and everything that goes along with it. I always recommend seeking out the very best medical care at the top cancer centers and following the doctors advice to the letter. What works for one person may not work for another. This makes deciding even harder! Each choice you were given sounds like it would work but there are no guarantees that either would be successful. What Im trying to say is that both roads are rough and your current health will play a big role in how well you get thru it, no matter which you choose.

If I were in your position, I would do my very best to build myself up as much as possible with good nutrition, high whey protein, hydration and high calories. Then I would put my trust in one of the doctors and go for broke.

So sorry about your difficult decision! Best wishes!!!!

Paul,

I commented on your Facebook post already and I really do like the approach of Dr. Harrison, he is top notch and his methodology makes sense. You are in "rare air" so to speak as you are a rare case that isn't going to have established guidelines, so what the good Dr has recommended makes sense to me.

I'll second what Christine has said, nutrition and hydration should be your focus now and controlling your stress levels through different stress reducing techniques. I've done several write ups on both nutrition, hydration and stress management techniques and will happily share them with you if you wish.

Keep your chin up Champ

Eric

Thanks ChristineB,

I already go to, and was treated at one of the top hospitals in the country for several years, according the the U.S. Business Reports Best Hospitals, in the country out of approx 5,000. They are also one of 17 hospitals on the Honor Roll due to being top in at leaast 6 specialties out of 17. They also rank #17 for Ear, Nose and throat in the the country. Memorial Sloan Kettering, on the NIH list, is ranked #16 for ENT.

I knew about the NIH listings previously, and had already sent my medical records to Memorial Sloan Kettering, which is on the NIH list, and only one in NYC. I'm still waiting to hear from them after several folow-up calls, and called again today. They are still reviewing my files, and will get back to me in a day or two.

Thanks Frank.

I go to their site every so often. They have monthly meetings in NYC, that I have yet attended. I would lke to hear anything about diet, nutrition. I have a Vitamix and a juicer, and most Everyhing else to prepare food with and pretty good at cooking anything. I used to diet, exercise often since the 70"s, and was a gym rat most of my life, took plenty of vitamins, ran, biked, swam and body build, alot of good that did lol. Maybe start juicing more with organics, ph diet, reduce meats, take vitamin C, baking soda, no suger, apple cider vinegar, probiotics, like I used to do, but seems i like my bucket list diet more lol.

Paul

Sounds like an excellent plan and well thought out. Congratulations on going above and beyond as 110 GY is even more than my 97GY so definitely an issue with two neck surgeries. Although I personally am leery about Erbitux since it failed me so spectacularly. My advice is IF you do not develop the acne rash (the skin dermatitis does not count) quickly, ask Dr. Harrison to consider another chemo option. My understanding is that outside of the acne rash, there is no way to determine if your genes let the Erbitux work (unlike the genetic KRAS test for colon cancer patients to see if Erbitux would work for them). Everyone is waiting for the clinical trials results comparing Erbitux to platinum but we don't have them yet.
I love my Vitamix as it lets me eat the same dinners as my wife each night through my feeding tube. Wow, we thought we were the only ones who had given up sugar over 20 years ago. Seemed so unfair that exercising, eating healthy mostly vegetarian, etc etc did not protect us from this cancer
Stay strong
Charm

Thanks Charm,

I had cisplatin, and 2 other chemos, and did not fare well, so that is not being considered, and neither with my kidney disease. Even the rash is not true that Erbitux is working. anyway, it only gives radiation a 10 precent boost to radiation. There is new study that shows that Erbitux is less effective in the southern belt for some reasons. They are suspecting the heat, besides the K-RAS mutation.

I read that dung the IORT they give up to 24Gy in about 30 minutes. Radiation later afterbhealing it could be 64Gy, but will find out more on Tuesday. Monday I go for a CT scan, but have to do without contrast due to the kidneys. The surgeon said the carotid artery damage is the concern, and after that is all down hill, I hope he ment easy lol

Sorry to hear you at using the peg. I still have mine, although I haven't used it over a year, but never had the chance to have it removed. Not now since I do not know how surgery and radiation will turn out. Thanks for writing.

I saw my local oncologist yesterday for an epogen shot or anemia, and told her about the treatment plan from BI. She was not familiar with it IORT, and spoke with her partner, who both concluded is sounds lke the best option, and really have no choice at this point, and physical ok for surgery now.

Spoke with my local Radistion Oncologist, who offered treatment, and she thinks Beth Israel is a better place, option at this point, and knows tht Dr. Hartidon is ind of the bed, and wold go by wht he advises.

I'm having a CT scan on Monday, no contrast, due to high creatinine levels. I meet with Dr. Harrison again on Tuesdsy. Surgery is scheduled for 8/12/12.

Paul B

Take a look at today's Washington Post expose on how Epogen, Procrit and Aranesp actually promote cancer tumor growth and how the drug companies hid those facts while touting them as great for anemia. Anemia drugs made billions, but at what cost?
Of course you could be getting the minimal dose but according to this expose, most doctors still rely upon false medical journal reports and the ethic challenged doctors who profit from them.
Charm

Thanks for looking out Charm. I saw the article, and received another injection yesterday! I have been takng epogen/ procrit for a few years, even before cancer diagnosis. I knew this for a year now that it can increases tumor size. You have to sign a FDA required form you were advised of this fact. I spoke to my oncologist, and was told then that it is a concern when given above certain blood levels, like the article mentioned. if my Hemaglobin goes past 10, which is still low, I do not get an injection. Last week I was 8.7. Yesterday was 9.3. I go back next week, and may get one last shot after the cbc which I think may be around 9.9 Normal hemaglobin fora male is around 13-17. Women are slightky lower. it does improve the QOL, so the reason I still get mine. The alternatives is a blood trnfusion. I woud not be surprised if it increases, accelerates tumors even when given properly at lower blood levels. Who knows if his had an impact on my recurrences.