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View Diary: Monday Night Cancer Club: 50 Years of Followups? Young adults w/cancer (62 comments)

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  •  thank you, PhoenixRising (6+ / 0-)

    excellent diary, beautifully written . . . hotlisted to reread.

    i was diagnosed about a month before my twenty-fifth birthday.  in the almost seven years since, things are so incredibly different that some new doctors i've seen have never met anyone else who had arsenic therapy for lymphoma. i'm still surprised at, but entirely grateful just to be here this far out.  no one else from my drug trial group (we started with 34, in 2006) is still alive.

    Yes, we need to talk about this. Please sign the dKos Petition to start a national conversation about gun control.

    by Avila on Mon Dec 31, 2012 at 06:47:46 PM PST

    •  Do you keep up with your trial group? (5+ / 0-)

      Guess I should say, Did you. That never occurred to me as something one would want, need or be permitted to know.

      My wife was very fortunate to fall into eligibility for a trial that was being administered at our then-local hematology program at UCSF. Most of the guys seroconverted during the trial, so she was one of the only ones who completed the experimental treatment.

      At that time, we knew a lot of men who came out of the ward dead for reasons related to HIV--may be hard to imagine at your age :), but back in the day everyone died, it was just a question of how long he had.

      One of my local doc's referrals was to a UCSF clinic. I just couldn't make myself climb that hill, so I went to the East Coast facility instead, even though the transit costs have been crippling. One of the irrational responses I chose to indulge during the short period in which I had to make dozens of existential decisions.

      Parent. Entrepreneur. Cancer patient. Moose tracker.

      by PhoenixRising on Mon Dec 31, 2012 at 07:11:27 PM PST

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      •  yes, we stayed in touch (1+ / 0-)
        Recommended by:
        peregrine kate

        though more accurately, the families kept in touch.  all of the patients in my group were from different states, and roomed together on the same floor at UTMB for about 12 weeks or so.  the families got to know each other, and the patients did, too, to different degrees.  

        as our number decreased, keeping in touch seemed more important.  we joked about living in "the shadow of the valley" but a bond formed in those long weeks of seeing only each other.  later on, when someone got married, or graduated, these events were celebrated as though the person was a family member.  (over half of the patients had died within the first two years.)  when anything good happened, the last few, all of us post-BMT, were thrilled.

        your wife's experience with a local trial and the conversion is heartbreaking to me, though i know someone on Gleevec now for brain cancer, so it may be that she and her group were among the pioneers of Gleevec.  from volunteering at Texas Children's Hospital, i believe childhood leukemias have a very hopeful prognosis now, because of drugs like Gleevec.

        the way you take responsibility in the long term, though, is incredible to me.  i truly admire your perspective.  (irrational? pero, no . . . i get it.  i couldn't have done that, either.)

        (when stem cell research was defunded by then-President Bush, my sick sense of humor and fatalism won.)  

        different times, and many advances i never expected to live to see, in just under ten years.  i wish you and your family the very best.

        Yes, we need to talk about this. Please sign the dKos Petition to start a national conversation about gun control.

        by Avila on Tue Jan 01, 2013 at 01:45:20 PM PST

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    •  Arsenic! I assume that's now completely outmoded. (5+ / 0-)

      I'm glad you're still here, Avila. So sad for the others in your group. Such a mystery for us all.

      Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Mon Dec 31, 2012 at 07:23:53 PM PST

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      •  Katie, thank you so much (1+ / 0-)
        Recommended by:
        peregrine kate

        it sounds horrible now, yes.  but then, it was one slender thread of hope, when no other hope seemed available.  now it's so outmoded, many doctors have never seen a patient who's had arsenic treatment.  (one reason i'm very pro-EHR, and hope for that immediate access to medical records . . . the local hospitals had never seen lab tests or blood smears like mine, and thought it was lab error.)

        Yes, we need to talk about this. Please sign the dKos Petition to start a national conversation about gun control.

        by Avila on Tue Jan 01, 2013 at 01:50:03 PM PST

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    •  Wow. Avila. I did not know this about you. (2+ / 0-)
      Recommended by:
      peregrine kate, Avila

      Thank you.

      Talking about how to stop mass shootings in the aftermath of a string of mass shootings isn’t "too soon." It’s much too late.
      ~~ Ezra Klein

      by smileycreek on Mon Dec 31, 2012 at 11:35:27 PM PST

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      •  smileycreek, how kind of you (2+ / 0-)
        Recommended by:
        smileycreek, peregrine kate

        i had been here at Daily Kos for a while when it happened, but i really didn't talk about it then or for years after.  

        Patriot Daily and blueness knew, but it was just something i couldn't talk about for many years.

        without peregrine kate and MNCC, i don't think i ever would have been okay to talk about it.

        Yes, we need to talk about this. Please sign the dKos Petition to start a national conversation about gun control.

        by Avila on Tue Jan 01, 2013 at 01:53:13 PM PST

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