Shawn,
I think the point to take home is to get all the facts of your case in hand and then seek other opinions. That is the WARRIOR and SURVIVOR that flows through the blood of those hard core survivors and those in training.

NEVER give up, NEVER accept NO.

There are always other therapies and I think the idea of "go with the flow" is fine for many avenues of life; it unfortunately, does not play well here when your life is in the limelight.

I am no grizzled veteran like some here but I know enough by reading your profile is you have barely struck out and begun the fight. Understanding that you have previous complications that make certain therapies not possible means there are less available but certainly there are others to look into.

Do not lay down, do not be defeated, do no let Paul make you cry. What a waste of time. You have no time to spare. Get all your records together ASAP. And DEMAND to draw from them every other possible therapy for your situation.

Having HIV can be a lead to sources within the community; those living with HIV and cancers. Scour hard and find some contacts there.

This is YOUR time to take control!

Go back to Kaiser and ask/demand for another relook by the tumor board. Write down all your key points. List the alternatives you have found from your other sources, especially the hiv community.

Ask to attend the tumor board meeting. I did attend and it was comforting.

Best to you in the biggest fight of your life!

Last edited by donfoo; 10-07-2013 07:13 PM.

Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com