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celebrations
ParticipantNeil and Zoe,
thanx for these encouraging news.
I get a shot every week, what is your dosis, mine is 1ml or 40 000 units per week, any idea how much you get?
Have a nice day, BergitParticipantHi,
I have got a trisomy 8 with MDS-RARS.
My hemo said because of it my risk would me intermediate – actually this could mean neither good nor bad…
There is no therapy against it.
Apart from being discovered it is not even mentioned any more….
Not necessarily there is a higher risk to develop AML.
Otherwise I read trisomy 8 could be associated with breast-cancer…means that women who have breast-cancer do have more often a trisomy 8 than healthy women.
I know two more trisomy 8s in this forum.
That is all I know about it.
All the best, celebrationsParticipantHi, I have been receiving EPO since 4 weeks now…it seems to work, for my HGB has developped from 9,1 to 10,5 – and my energy level has really increased…..I am feeling better, working is easier…Now I have read all about these alarming side-effects of this drug and I am highly worried !!!
Shall I stop taking it because of probable harm…or is this just an attempt of the pharma industry to get rid of the responsibility of paying for EPO…
How do you see that?
And what experience do the forum members have with the response to erythropoetin injections…!
And with possible side-effects?
PLEASE TELL ME!
I am so uncertain about continuing now. My hemo told me, unless we don’t go over HGB 12, there wouldn’t be any use to worry..
What do you think????
Greetings, celeParticipantYes, this is the right agressiveness, energy and sense of humor that you will need to meet the challenge. Take the best out of it and do not waste any energy!
God bless you,
celebrationsParticipantI thank you all for the encouragement, because when I am reading your posts, I tend to believe that MDS can be handled more as some chronical disease than as a fatal one. To have some examples in this forum who contradict most of the statistics makes me feel safer.
I have been dx not long ago (January 07) with MDS/RARS and a trisomy 8. My wbc and platelets are still quite normal, whereas my rbc are ca. 2,4-2,6 with my hgb being 9-10. Also for me the docs recommend the “watch&wait”. I am tired once in a while and short of breath whenever I climb stairs or hills. No, people wouldn’t believe, I was seriously ill. My children do not believe it either.
Some weeks ago I logged into this forum and I ordered some CDs 2002-2006 about MDS treatment and prognosis by the mds-foundation. I put them in my PC and after having listened, I was so frightened…I was under a tremendous stress and needed some days to reintegrate.
Your positive and optimistic views help me a lot, thus I am pretty aware of having a fatal disease with the only cure being a SCT.
CeleParticipantDear Lizy, what kind of subtype do you have ?
Do you know already about your eventual cytogenetic abnormity ? How many blasts do you have in your bone marrow ? And what’s your risk score ?
These are the questions I would ask my hemo and/or the physicians in the center of exellence, where so ever…It is very much important that you trust your docs.
Well, I am 50, mother of two boys with MDS-RARS and a trisomy 8….I have been knowing it for two months olnly, so I am very much conscious of your “sitting duck feeling”.
I don’t get any medicine so far, but I am afraid there’s soon going to be transfusions for my red blood cells keep going down!
My best wishes are with you, contact me if you want to, I am from Germany.
CELEBRATIONSFebruary 28, 2007 at 5:34 pm in reply to: Consider cord blood transplants if no bone marrow donors available #17027ParticipantHi everyone, could you explain, in what cases there is going to be a transplantation, and in what cases the docs prefer supportive care only, such as medicaments and transfusions???? Please inform me, I am from Germany with MDS-RARS, thanx.
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