From: ara@zurich.ai.mit.edu (Allan Adler)
Newsgroups: alt.support.cancer
Subject: Re: Leukemia
Date: 5 Oct 92 06:05:01 GMT
Distribution: alt
Organization: M.I.T. Artificial Intelligence Lab.


I am posting this for my friend Joe Seif. Please reply to him at
SEIFF@PACEVM.BITNET  (Yes, there are two F's).
============================================================================

Peter Mason writes:

>I have a few questions, which I think apply to cancer treatment
>in general, as well as leukemia:

>- What have other people done to learn about disease and treatment?
>Her physician, while very supportive and responsive to questions, is only
>available for about 30 minutes per day.  I've started reading to get a
>general idea about her prognosis, and about some of the controversies in
>the field (notably when to do bone marrow transplants).  But I'm unsure
>how much I really want to know about this stuff. Will it make a difference?

>- Does it really help to talk to others who have been through this?

I finished 6 months chemotherapy for Hodgkin's disease nearly 3 months ago.
I am a 52 year old male, I live in New York City.

I found this group to be one of the best sources for information
on all aspects of the disease and treatment. Let me also say that a doctor
who is 'very supportive and responsive to questions' and is 'available for
about 30 minutes per day' sounds like better medical care than most people can
find. I think it is important to know as much as possible. It seems that most
doctors will make decisions for their patients but the decisions are often
based on incomplete information. When I was diagnosed for Hodgkin's disease,
my doctor recommended one of many available forms of chemotherapy, MOPP-ABV.
She (the doctor) did not recommend that I get a second opinion but neither
did she try to dissuade me from it. The second opinion (a research
specialist in the field) recommended a different form of chemotherapy, ABVD,
citing evidence that it was just as effective as the other treatment but less
toxic. I stayed with the first doctor, (for a while) but she agreed to
administer the ABVD treatment. I experienced severe nausea due to the
treatment and the drugs I was getting for the nausea (Ativan and Compazine)
didn't help, they made it worse. I heard about Zofran for nausea from some
relatives, but my doctor said it was inappropriate for me. Eventually I posted
questions about Zofran to this group and received many useful replies. Armed
with this information I insisted that to my doctor that she administer Zofran
with the treatment and she finally agreed. It worked like a miracle. This
doctor was generally defensive and impatient when I questioned her decisions.
I was also concerned about her decisions on the course of my treatment and
at this point I switched to a different doctor, who has been much more
supportive and cooperative.

When I finished the chemotherapy, there was some question as to whether I
should then get radiation treatment. All the doctors I has seen were
recommending it. I had read some journal papers, (sent to me by other friends),
indicating that radiation after chemo is especially toxic for Hodgkin's
patients and kept questioning the need for the radiation. My doctor also
had some doubts and sent me for consultations with specialists in Boston.
They recommended that I not undergo radiation, but rather monitor the disease
with regular CT scans. I have so far had the first of these post treatment
scans and so far so good.

However, the Boston specialists also said that had I come to them before
treatment, they would have recommended an altogether different course of
treatment namely a laperotomy (exploratory surgery and removal of the spleen.)
They said that would have been at least as effective as the chemo and less
toxic. The interesting thing is that none of the doctors I saw in NY (I saw
3 and talked to several others) recommended anything other than the chemo.

I am writing all this to demonstrate that in cancer treatment even the
'experts' do not seem to have access to all the information. In my case,
there were very different alternatives available but all the doctors I saw
ignored some of the possibilities. These choices often involve trade-offs
between effectiveness and toxicity, well established courses of treatment
or newer but, perhaps, more effective treatments. It seems to me that the
patient and those close to him or her, should be at least be aware of these
choices and at least have a chance to be a part of the decisions.

By the way, excellent information is available from the National Cancer
Institute (NCI) PDQ information system. Send the message described below
to get started.

                     To: cancernet@icicb.nci.nih.gov
                     Subject: < Leave this blank >
                     help  <This is the body of the message..>

>- On a very practical level, does anybody have good suggestions about
>how to deal with hair loss? As near as we can tell, my wife's going to
>start losing her hair in the next week or so.

Hair loss was quite traumatic for me and I suppose it is much more difficult
for women. When it got really thin I shaved it all off (head and beard). I
kept shaving to keep it clean looking but soon noticed that it was growing
back quite fast. So I let it grow back and by the time I finished treatment
it had all grown back.
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