Pete wrote:
> Hi all, have been diagnosed with myelofibrosis for about 12 months and
> apart from treatment with Hydrea nothing much is happening.
> Does anyone have any comments on developing treatment/therapies or
> recent experience w ith this problem
> Thanks
> Pete
Hello Pete,
I see AU (Australia) in your newsgroup posting header. When I was
researching this, apparently there've only been 30 or so people with
myelofibrosis in Australia, so it must be hard, being one of so few
people, to find support there.
<http://www.cancerbackup.org.uk/Aboutcancer/Pre-cancerousconditions/Chronicidiopathicmyelofibrosis>
Myelofibrosis is one of a group of conditions known as the chronic
myeloproliferative diseases (CMPDs). They involve an over-production of
one or more of the blood cells that are produced in the bone marrow. A
small number of people with a CMPD will go on to develop a form of
leukaemia.
Hydrea is a chemo.
<http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Individualdrugs/Hydroxycarbamide>
Since you're on a chemo, it's hard for me to know where to refer you, the
MPD lists (below) or one of the leukaemia lists for support.
http://listserv.acor.org/archives/mpd-net.html 27000+ people on the
myeloproliferative list here
Might be worth joining both the above and the one below. (I only found the
one below with an intense search and they may also be on the ACOR list
above and/or not active but do try both in case you can find others from
Australia on one or the other.)
MPD-SUPPORT- L
A myeloproliferative disease medical mailing list focusing on polycythemia
vera, essential thrombocythemia, agnogenic myeloid metaplasia, and
myelofibrosis. Anyone - patient, family member, or health professional, is
welcome to join.
listproc@moose.uvm.edu
I'm also posting some other links to help you get started, so you know
there's many clinical trials and hope in Bone Marrow Transplant, if it
becomes necessary.
Other sources of information:
http://www.mpdinfo.org/faq/faq_et.html http://clinicaltrials.gov/show/NCT00287261 (one of 80 or more clinical
trials - searchable database)
http://www.ciap.health.nsw.gov.au/ho.../1991/a04.html Case
study of a patient for bone marrow transplant
http://leukemia.acor.org/bmt-stories.html BMT Survivors' Stories
I hope the above wll help you find community and the information that you
seek.
Best wishes,
J
Myelofibrosis 
Linear Mode
