Hello Jeremy,
Have you tried the ACOR lists?
Along with various leukemia lists (alphabetical - A for ALL and AML and C for
CML), there's BMT Talk
http://www.acor.org/mailing.html?l=b
If you click on it, then on the list, and follow the requests, select "digest"
mode (otherwise you could be overwhelmed with single emails).
A moderator will email you, probably within half a day, when you can start
sending and receiving messages.
All my best,
J

Hi Jeremy,(from a kiwi across the ditch.)

I have CLL - LGL T cell leukaemia.  (c=Chronic LGL = large granular
lymphocyctic leukaemia)  At the start during my massive attempts to find
information, I couldn't find very much at all as I kept spelling
leukaemia with an "a" in it - you will find more info if you drop the
"a" and spell it leukemia.

Anyway, particular to my form of leukaemia, is the loss of neutrophils.
My neut count had been 0.3 for all of 2004.  If it had dropped to 0.2 I
was going to be put into isolation and on IV antibiotics.
I have been told the actual Leukaemia may not kill me —it will be a cold
or flu, or some other simple infection that will take me out.

Now to back track a little, since age 15 my life has been one of
hardship, constant physical struggles - 29 orthopaedic operations,
enormous financial challenges; as a disease is not an accident therefore
no ACC!   I'm now 43, so have coped 28 years with severe rheumatoid
arthritis.

Early in 2004 - my Uncle tried selling a “network marketing” product to
help slow my deteriorating arthritis and this product actually comes
from Australia.  No way could we afford it.  At that time nor did  I
believe in those "pyramid selling type schemes".

When the news of my leukaemia went through the family grapevine, my
Uncle telephoned and begged me to try it,  at cost price, “only once
chance of living” and "life is not a dress rehearsal" etc - He wanted me
to spend $800 a month and said if it was one of his own children, he
would mortgage his house for them to have the stuff.  I bargained $500 –
if the product any good, it would just take longer to work and my
leukaemia is much slower progressing than your "ACUTE" type.

We scrimped and save to buy me this powder; but within one blood test my
levels rose to 0.6  I did truley begrudge paying (not fair familywise!)
but now eight months later its been  worth every cent.

My Oncologist/Haematologist has also said he has never seen such a
dramatic improvement, nor would have he expected any rise in someone
with my condition, especially after so long (5 years, 6 months of below
normal levels, my last normal WBC had been March 2000.)

I wish everyone who needs something like this could get it.  I believe
if I had not started this product, I may well have died during this last
winter.

I do wonder at times what could have happened had I committed to a
higher dose/more money - would i have improved quicker?  We were not in
a position to spend more, but now even my husband, son and half a dozen
friends all await the results of each blood test I have.

Several members of my family are taking the "Mannatech" products.
Please if you have any sort of money available, find someone in your
country who sells this wonderful stuff.  It is sold as a "dietary"
supplement - but the results people are having is nothing short of
astounding.  It can be taken will all prescribed medicines and many US
hospitals are prescribing it for their patients.  The US await a Food &
Drug Authority decision - but it will not ever be free quick enough to
help me!  My only way of getting it is to pay for it.  This has a catch
for me too - because it comes in for me from Australia, I am only
allowed $300 a month to enter the country, or customs seize it.

Two leukaemia patients in Christchurch took it while going through the
later stages of chemo - and reported back that they wished they had
started/found the products earlier as it lessened the nausea etc

I am not trying to sell anything to anyone here - all I want to do is
provide information.  Whether or not you act is one of your decisions
regarding your treatment choices.

It took until 16/9/05 slowly climbing, occasionally it was two steps
forward, three back ... (0.3 0.6 0.9 1.1 0.8 0.9 1.4 1.4 1.6 2.3 1.8 1.9
  2.3 2.3)  for me to break the 2.00 lower limit of normal neutrophils.
 Last blood test my neutrophils were 2.3.  I never believed I would
have got over the magical 2.0 level so am estatic.

I sleep better, my DHC codeine for pain relief (which I have been on 18
years) has halved. Oddly enough another good effect has been two colds
sores around my mouth since taking the powder - not one every month.
Family say I am looking a lot better, my skin isn't so grey looking, my
hair and nails have both improved.

Good Luck with everything, I was devastated to be told that because of
my rheumatoid arthritis being so severe, I am not eligible for a BMT or
stem cell therapy.

KiwiLadyMel