Ron, I know that you must be feeling pretty poopy right now. I just signed
on for a minute, but want you to know that I'm with you friend in prayer and
in heart. It is never easy to hear the words that are the exact opposite of
what you are really hoping and praying for. And when you get them, they
don't come with a reference over somewhere else for the answer you are
seeking and it is just plain frustrating.. So go ahead and rant and rave it
out today my friend, so that you will be ready to move on. If you want some
help on the Internet research, then let me know and I will help you search
for information. I am glad that you have a doctor that won't leave you
hanging for the whole weekend. So I will be here as will many others with
you... God is Blessing you Ron.... Take that to the bank..... Love, Carla
-----Original Message-----
From: HewRon <HewRon@aol.com>
To: mol-cancer@lists.meds.com <mol-cancer@lists.meds.com>
Date: Thursday, January 22, 1998 2:27 PM
Subject: [MOL] The doc says (ugh)
>Well, here I am, more or less straight back from the doctor's and the bone-
>marrow biopsy. He didn't have atavan and gave me valium instead, by
injection,
>which seemed to be not quite as effective, but still. Here I am at home,
the
>bone marrow has been taken, and I have had a blood test with absolutely
lousy
>results.
>
>My white cell count is back down to 2,000-plus. My platelets are just OK,
and
>my red cells are low too, accounting for my tiredness. Oddly enough, when I
>asked for a print-out of the blood-test results, the doctor said it wasn't
>quite ready and he'd get it to me later. He agrees with me that it is
>pointless to do more consolidation with Cytosar alone, and recognized the
>negative impact it had had on me (with such scant results), and though he
had
>me booked for the hospital next week (I would not have gone) he said we
would
>delay that until he has looked into the possibilities of Topotecan
(Hycamptan)
>for my condition, which right now is not really leukemia (more later on
that).
>He was thinking of combining Cytosar and Topotecan, and said he wanted more
>time to look into Topotecan and we could discuss the situation next week.
>
>So, ladies and gentlemen, I am just about back where I started. And I
cannot
>say there has been any deception. When I went into consolidation he told me
>the chances of success were one in three. However, the bone marrow has not
yet
>been examined, of course. Maybe there will be some positive indications. He
>said we should have the results early next week, but I wouldn't be
surprised
>if he called me over the weekend with his own preliminary appraisal.
>
>Ye gods and little fishes, this is a pain in the butt. Or, yes, the hip
Carla.
>The procedure wasn't too bad, and I attempted to sing during the process.
In
>the past on such occasions I have mumbled jibberish or made religious
>statements. No kidding. This time I came out with "Sunday", the glorious
>choral piece from "Sunday in the Park With George", which hardly sounded
>glorious in my voice but it gave me something to do at the head end while
the
>action was taking place at the hip end.
>
>Now, dear friends, have any of you heard of this Topotecan or Hycamptan? I
>think he said it had been used in the past for uterine or some other
cancer,
>but was now thought to have a healing effect on broken DNA, if I've got it
>right. It has something to do with DNA anyway. Somehow Topotecan could have
a
>healing effect on those headed for leukemia. I definitely positively
>absolutely no-doubt-about-it do not want to go back into the hospital, but,
of
>course, if I have to I have to. I am hoping for something I can take orally
>(or even in suppositories!). A vain hope, I'm sure. Anyhow I'd appreciate
any
>input I can get from you wonderful folk out there.
>
>As to the correct nomenclature for my condition, he told me that I really
do
>not have leukemia now, but I am not in remission. I have myelodisplasia,
which
>I have mentioned several times hereabouts. It means you are on the way to
>leukemia. Life gets tedious, don't it? (No I love life, but when you've
just
>got home from a blood analysis like that, well, you can be forgiven a few
sour
>remarks. So here goes another: @#%*&%!)
>
>Meantime, later on I'll go to the www and see what I can find there.
>
>Thank you for your attention. Over and out.
>
>God bless
>
>-- Ron
>
>PS It's a glorious day in Manhattan and it looked great from the taxi.
>
>
>
>
>
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