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

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Barry Keith
Barry Keith Member Posts: 11
edited March 2014 in Head and Neck Cancer #1
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...........

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  • Hal61
    Hal61 Member Posts: 655
    #2
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    Surgery
    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
    zinniemay Member Posts: 522
    #3
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    Hal61 said:

    Surgery
    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

    Barry
    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
    Kimba1505 Member Posts: 557
    #4
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    zinniemay said:

    Barry
    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

    Very tough road.
    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
    Kent Cass Member Posts: 1,898 Member
    #5
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    Kimba1505 said:

    Very tough road.
    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

    Barry
    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
    kimmygarland Member Posts: 312
    #6
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    Kent Cass said:

    Barry
    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

    Thinking of you
    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
    Hondo Member Posts: 6,636 Member
    #7
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    Hi Barry
    Will send you a PM

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