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RE: Info on Us

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  • TSClover@aol.com
    Thanks Ben for sharing the information you got from the lymphoma specialist. What was the reason that Janice received treatment at this time? I always wonder
    Message 1 of 2 , Oct 31, 1997
      Thanks Ben for sharing the information you got from the lymphoma specialist.
      What was the reason that Janice received treatment at this time? I always
      wonder why someone with a similar dx is treated when I am on W&W. I'm
      perfectly OK with W&W (it helps a great deal with denial!), but I always
      wonder if I'm missing something. Don't get me wrong; I am NOT longing for
      chemo. My ears just perk up.

      I did see Dr. Levy because it appeared that I qualified for the study, and I
      live only an hour away from Stanford. I turned out that my nodes aren't
      quite big enough, but they want to see me again before my one-year dx
      anniversary for reconsideration. This doesn't mean that I have decided for
      sure to do it if they decide I qualify -- I just want to know what my options
      are (I feel like I'm trying to decide if I really want to go to the Prom with
      Johnny, even though Johnny hasn't asked me yet!) . At first I thought I was
      in LOVE with Johnny because I had the mistaken impression that Johnny might
      have the CURE. But alas, I was a bit disappointed with Johnny's stats. But,
      Johnny's supposed to be one of the best!

      Where do you live Ben and Janice? If you should ever come out Stanford-way,
      let me know. Maybe we could help.

      Laurie H.
      Pleasanton, CA
      dx 6/97 follicular-cleaved low-grade NHL, stage IV
    • Janice and Ben
      ... Please keep in mind my specialty is computers, or ONES and ZEROS, not LIFE and DEATH. To me Watch and Wait is a very reasonable thing to be doing according
      Message 2 of 2 , Nov 1, 1997
        At 02:57 AM 11/1/97 -0500, you wrote:
        > What was the reason that Janice received treatment at this time? I always
        >wonder why someone with a similar dx is treated when I am on W&W. I'm
        >perfectly OK with W&W (it helps a great deal with denial!), but I always
        >wonder if I'm missing something. Don't get me wrong; I am NOT longing for
        >chemo. My ears just perk up.
        >Laurie H.
        >Pleasanton, CA
        >dx 6/97 follicular-cleaved low-grade NHL, stage IV

        Please keep in mind my specialty is computers, or ONES and ZEROS, not LIFE
        and DEATH. To me Watch and Wait is a very reasonable thing to be doing
        according to several oncologists we have talked to and we might be doing
        W&W down the road. It is controversial to really be aggressive since
        studies have shown being aggressive does not seem to affect the overall
        prognosis. Here is where I have a problem, much of the DATA they are using
        today is from studies done in the 1980s. It is too early to tell how well
        the cancer vaccine, MoAbs, are doing to affect the prognosis. To answer
        your question, Janice and I found out, with Follicular mixed (not common)
        there have been some studies that show if you can get it into COMPLETE
        REMISSION, there is a chance for a longer remission than say for Small
        Cleaved, thus that is why we are going to keep going with CVP. (But, we
        might not ever know if she has Follicular mixed.)

        So, to me this means, we have a new avenue to gather information, based on
        the different types of low grade lymphomas, what are the differences in
        regards to treatment?

        In the low grade (indolent) category there are:
        small lymphocytic, small cleaved cell follicular, mixed follicular, small
        cleaved cell diffuse, intermediately differentiated diffuse and cutaneous
        T-cell (mycosis fungoides).

        Other types of low grade non-Hodgkin'slymphoma are:
        lymphoplasmacytoid lymphoma, mantle cell
        lymphoma, mucosa-associated lymphoid tissue (MALT)
        lymphoma (or MALToma), and splenic marginal zone lymphoma

        The above from Mike's Lymphoma resources:

        http://www.alumni.caltech.edu/~mike/lymphoma/nhl.html

        Keep us posted on the Levy program, I know several people on here are
        either in or in line for that protocol.

        -Ben (and Janice) in Minneapolis, MN
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