Question about Vidaza

[pleasant1911]

My father has MDS-MF and was on Revlimid for six months and it has stopped working and now his doctor has him on first cycle of vidaza. My question is: Does anybody know how good vidaza is treating MDS? and also what about MDS medicines like Antithymocyte globulin, Gleevec, or other treatments. He is a lower risk MDS, so is Vidaza the right medicine for him?

And He has refuse to get a second opinion or switch to a new oncology office with many doctors.... But if you guys know what vidaza is like. I been reading threads about vidaza all week...

[bailie]

Vidaza does not work for everyone, but it is considered about the best drug available for most people with some forms of MDS. I have just completed my 8th cycle of Vidaza (the last three combined with Revlimid) and it has brought my blood counts to about normal. The Vidaza had my counts into the normal range then the addition of Revlimid knocked them down just below normal. The Vidaza made it possible to go into my stem cell transplant (at the end of this week) in good health. I am feeling completely normal (golfed 18 holes today and walked the entire hilly 6 miles without any problem) and this is primarily from the beneficial results of Vidaza.

[Birgitta-A]

Hi pleasant1911,
Vidaza is not approved in Europé for low risk MDS because they have not showed so positive results as in high risk patients. I have seen studies with between 30 and 67 % response rate. Remember that it will take several cycles before response in many patients.

A fraction of MDS patients will respond to ATG. HLA-DR15 positivity (HLA means human leukocyte antigen), young age and short duration of red cell transfusion dependence seem to predict for a response to immunosuppressive therapy in MDS patients.

Gleevec is a wonderful drug for patients a kind of leukemia called CML but has not showed positive results in MDS patients.

Your father's symptoms seem to be similar to mine - I have severe myelofibrosis since dx 2006 when I was 67 yo. In fact my dx was MF the first year and I was tx dependent from dx. I got supportive care until 2010 when I started treatment with Thalidomide with positive result. The last year I have been treated with Revlimid. My HGB was 14.5 in April 2014 but is now decreasing.

Hi bailie,
Congratulations!!! Hope the SCT will be a success!
Kind regards
Birgitta-A
75 yo. Cromosome aberrations 12pdel and X-.

[pleasant1911]

Thanks guys for the response. I am glad that Vidaza has work for you bailie. I am hoping for the same for my dad.

Birgitta-A, I have been reading and educating myself on your previous threads too. I am just being overwhelm by all this...I dont know how you guys deal with day to day....this medicine that medicine, medicine its working and now not working....its TOO MUCH!!!

My father is not an computer person, so I am his research on MDS and how people like him are dealing and treating MDS. Its alot of good information about personal experiences and medicines and mds in this forum... Thanks you,

[Birgitta-A]

Hi pleasant1911,
You know when I got the dx MF 2006 I looked at the tables and found that because of my age and test results the median time for me was 26 months. I thought that I had lived a good life and been very healthy - never a day off due to disease.

My disease is a "project" and I spend 2 hours a day at my pc looking for news about drugs and other kind of "treatments" like trying to not increase iron overload by not eating red meat, avoid infections and so on.

Then I have a young optimistic doctor - a specialist in MDS - and a wonderful team a the day care unit where I have received 186 units of blood, iron chelation (Desferal) and treatment for complications like infections, DVT etcetera.

You are giving your dad very valuable help by trying to understand his disease and choosing the best possible treatment.
Kind rtegards
Birgitta-A