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Help Anyone?--3rd Time---Running out of Optiions???

Barry Keith
Posts: 11
Joined: Oct 2009

Surgerically removed tumor back of mouth, left wrist flap, 30 days rad: Dec 2008;

Recurred Oct 2009 flap issues due to previous RAD treatment. Received an additional 30 days rad, 30 HBOT and 6wks Carboplation.

Recurred again 7/2010. Very close to carotid artery; can't have any more Rads; doctor says he cut out all that was safe (can't cut too close to artery--can't make tissue flap for support of artery).

Surgery 8/23; no other treatment pending. Currently waiting pathology report; did they cut deep enough to provide clear margings? If not, doctor putting out emails for options to ONC's.

I'm in Hawaii, can't travel to another state easily.

Suggestions? Ideas?

PM is fine...........

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Barry, hope you don't mind an offer of support. I wish I had some amswers for you, you've had a rough road. I'm hoping the latest surgery will effect a positive change, and I can promise you that everyone who reads your post will be hoping, and praying for you.

best, Hal

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

While with my husband in Ann Arbor I meet a man who is in his fourth round of Cancer.His first was young like 18 then so on, this last one his wife said he was 46. He looked so young. He was doing treatments. I don't know what cancers he had. We were in the last two weeks when we met him and his wife. So I am not sure this answers your question, but what time we did see him he was doing very good.
I just want to know that you are in our thoughts.
Jennie

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Barry,
You have had a rough time of it. I an sending you all the good energy I have from PA to Hawaii. My only thought is TORS (Trans Oral Robotic Surgery). It what my parnter Mark had for his SCC left tonsil. It is a robot, guided by the surgeon, that does the surgery. The benefit to TORS is that it can do things the human hand cannot, like get closer to things, get under things, get behind things...it is very precise. Dr. Greg Weinstein and the University of Penn hospital, with his partner, O'Malley (I think) adapted this robot for head and neck sugeries. They train doctors now from all over the US. I know you said you cannot travel, but who knows, maybe some doc in Hawaii knows about this. Especially if surgery is your only option at this point.
Again, good energy coming your way,
Kim

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

From another, who I have not heard from for a troubling period of time- a Rad at Mt.Sinai in LA spoke of doing 2/day lower-dose rads in an area too close to an artery for any typical options. Your location may work against you, but you might want to mention this to your Rad, along with the info Kim has provided. Never have heard back from the one who told me about LA, so I cannot advise on success/failure. However, at this point, options would appear limited. Prayers are with you.

Believe

kcass

kimmygarland's picture
kimmygarland
Posts: 313
Joined: Aug 2009

and hoping the docs get you some answers. Seems a silly thing to say, but I will say it anyway - hang in there. ((hugs))

Hondo's picture
Hondo
Posts: 5635
Joined: Apr 2009

Will send you a PM

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