Slava,

All of your suggestions sound like options. That's good a NYC hospital can give you a consultation via e-mail, instead of traveling, which can be different than what was already suggested or maybe the same, but at least you tried! It's possible you can see 5 doctors, and get 5 different opinions sometimes! A tumor board of 12 sounds kinda small compared to others where I hear it may be 30 or more multidisciplinary health care professionals, but that doesn't mean they were wrong. One member here went to a tumor board meeting himself!

I'm in agreement that if the tumor spread during treatment, it may be chemo or radio resistant, which doesn't sound good. What was given and done is in the past, so try not to occupy your time with too much if it was the right or not, but it doesn't sound like any treatment plan I've seen used. I may have read about a of split course radiation with chemo in between somewhere, but not sure if its part of any current recommened guidelines in the US.

Radiation can be used in palliative care for pain, like bone. There are other types of radiation, like IORT, Intraoperative radiation, that is done during surgery, and usually followed by external beam radiation, but not sure if your brother would be a candidate. Brachytherapy is similar. Then there is Proton Radiation, which is very precise, which eventually killed my cancer after the 5th time with radiation, but there are only about 28 locations in the US. Usually it's 6 months minimum between the last radiation for re-irridation.

Keytruda is an option. I'm not sure how long it takes to effect the tumor. They are now being given in some trials with other chemo's or immunotherapy, but that equals more toxicities. An effective course of chemo for shrinking tumors is TPF Induction Chemo with Taxotere, Cisplatin and 5-FU or similar type chemo treatments, but the toxicities can be high, and should only be used in select patients. There are palliative care chemo's like Erbitux, which is really a type of targeted therapy that can be given long term, sometimes years. The good thing about chemo, targeted therapy or immunotherapy is that it can start quickly, which sounds like the need here.

These are just some of my thoughts, and by no means are correct, and this situation is way out of my experience, but just wanted to mention something. Not saying my situation was similar, but I was turned down for further treatment in April 2012 after my 4th cancer by my then current doctors, and then a major cancer center who is usually #2 I consulted with, but I found a top doctor that agreed to treat me, and several more times at that, and wouldn't be here if I didn't.

I hope you find the appropriate care and comfort for your brother.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs