[MOL] myelofibrosis -- for Mary Ann [02483] Medicine On Line


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[MOL] myelofibrosis -- for Mary Ann



Hello, Mary Anne

John Lehner has responded beautifully to your note. I'm so sorry you have had
this news, and understand your concern. It is of course important that you
maintain a positive attitude. You will find many people telling you that, and
it can even get irritating. It seems to me that a loving relationship, in
which you lift each other up, is the best source of a positive attitude. And
that you clearly have.

I know nothing about cancer, really, except that I have it, and mine is called
acute erythroleukemia. My doctor tells me there is now no trace of it in my
blood, but I have to go through a fourth 5-day period of chemo before he can
go into my marrow to determine how successful my treatment has been. When I
got John's note, I went to the Web and looked up myelofibrosis and to my
surprise found it described on a page about leukemia:
 http://www.leukemia.demon.co.uk/myelofib.htm. 
There are a lot of other sites about it, so in addition to the information you
will get from the sources John has listed, you can also resort to the Web.

>From your note it is unclear whether you want aggressive treatment or don't
want it. In my case, I didn't. I bought books, was given books, searched the
Web for alternate therapies, and was referred to people, but always came up
with the same thing: my leukemia would require "conventional" (which in my
book means severe) treatment, which could be complemented by vitamins and
various other "remedies" such as Chinese medicine. I myself had my initial
chemo (two weeks out of five in hospital) supplemented by a Chinese tea, or
soup, made by a friend on the advice of a Chinese doctor who was treating her
father in mainland China. It consisted of a particular packet she could
purchase in Chinatown, whose contents were to be boiled along with chicken (a
tiny chicken complete with bones), or a special kind of fish for which she had
to scour Chinatown, the final concoction being strained and delivered to me in
a thermos. My therapy went very well, my doctor said. Knowing I wore a
Buddhist "charm" I had been given, his final pronouncement on my "sailing"
through the therapy (I was never nauseous, but did develop painful but
temporary hemorrhoids), he said that during my stay a Buddhist barge must have
been floating on the East River. Of course, the modern therapy might well have
done just the same thing all by itself. Now I am taking Chinese capsules
designed for leukemia and anemia (which I also have) on a daily basis whether
I am in hospital or not. Again, you don't know what is doing what. But my
doctor says it's OK for me to take them.

In the final analysis I am being treated at a hospital very like Sloane
Kettering. As a matter of fact I went to Sloane for my second opinion (you
must get as many opinions as satisfy you), and was favorably impressed with
what I saw. I would be surprised if you could be better placed than here in
New York so far as treatment is concerned. I am not saying you should go to
Sloane Kettering, or to The New York Hospital, or any particular place, but
you have to start somewhere, and you can find everything here, ranging from
the kind of aggressive therapy I am receiving (during "induction" I was
receiving three chemicals simultaneously) to all kinds of alternate therapies.
In this regard, when I was searching I got a book called Burton Goldberg
presents Alternative Medicine, Definitive Guide to Cancer. I think it is
available at most bookshops; I got mine at Coliseum Books. I found nothing
much of help to me in that book, but it does contain many, many addresses,
nationwide, and it might give you some ideas or a general idea of how the land
lies. I have to warn you that I have looked up myelofibrosis in the index and
not found it. But as a general introduction to alternative or complementary
therapy, especially specific clinics, you might find it useful. It is
published by Future Medicine Publishing Inc. It is very, very anecdotal, but
I'm glad I got it because it did help me make my decision. If you decide to
spend the required $49.95 -- no kidding! -- make sure the cover says "cancer".
There are other books in the series, and they look similar. Look it over
carefully first, though.

 Please feel free to write to me directly, or through MOL, about anything.

Good luck and God bless

-- Ron



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