'My fathers has been
battling myleoprolific
disorder or mylofibrosis
for approx. 4 years now.
His spleen is
extremely enlarged
due to his weekly
injections of 45,000
units of "EPO".
Unfortunately, this is
the only thing that will
keep his red cell count
up.
My question is does
anyone know of anything
that he can do, or take,
to help relieve the
terrible itching that he
experiences constantly.
He will literally
scratch himself until he
bleeds, the itch is that
intense. His doctor say
that the itch is due to
his ill balanced blood
chemistry.
Any suggestions would be
greatly appreciated!
Thanks you very much!
SHAWN' |
moderator: Myelofibrosis is one
of the myelproliferative diseases.
The marrow becomes essentially
fibrosed over("scarred") as
fibroblasts over-grow. The infantile
hemopoietic organs like the spleen
take over, and of course the
erythropoietic drugs encourage
that.( It's better than having
endless transfusions.) Itch is
characteristic as the abnormal cells
and subtypes cause the release of
histamine, serotonin, and bradykinin
in the skin. Scratching until one
bleeds is to be discouraged-- of
course it takes enormous
self-discipline-- and the usual
approach is to try antihistamines,
natural or drug, and antiserotonin/bradykinin
agents, of which there are many.
Heat -- like hot showers-- worsens
it. It's not exactly "unbalanced
chemistry", if it were it could be
re-balanced.
Let's here what our other
participants have to offer for itch.
MAL |
| I also have
myleofibrosis for over a year now
and the only thing i have taken
medically for it is blood
transfusions. I sure need to find
out of any other medication that
will ease the number of
transfusions. Nick |
| My father was
diagnosed with mylofibrosis 2 years
ago. last year his spleen was
removed at 61/2 pounds. he has taken
a drug called hydroxia but it quit
working also he has taken procrit
shots but did not help either. as of
yesterday his hemoglobin was 6.2 and
they have my father scheduled for a
transfusion this friday. i wish
there were other alternatives my
father really doesnt like blood
transfusions. My father has been
a brick layer most all his life.
im not real sure how he got
mylofibrosis. but my understanding
is that it is a cancer in the bone
marrow. yet they say a bone marrow
transplant is to risky for him.
other then that all i know is they
say there is no cure. i am looking
for any kind of hope that there may
be out there any info would be most
appreciated thanks. Tonya 9-7-05 |
| I am 50 years, just
diagnosed at the Mayo clinic in
Rochester, Minnesota. Right now all
I am experiencing is the being tired
all the time from the lack of red
blood cells, the enlarged spleen,
the lack of appetite. The Mayo
clinic was very adamant about how
dangerous a bone marrow
transplant is. My biggest question
is with all the medical bills coming
in after your company's insurance
has paid, what do you do? They are
very, very large and like most of us
I have no nest egg, large savings
account, or rich relatives. I live
from paycheck to paycheck and barely
make it on that. I have a wife and
2 kids to worry about and don't have
any idea where to get help. Anybody
got any ideas? Please and thank
you. |
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