No Response to Vidaza or Revlimid

[aimeeb24]

I have been reading these boards for almost a year now. I have learned a tremendous amount from all of you and you continue to give me hope every time I come here. From all of your stories I know that one can live quite a long time with this terrible disease.

My 67-year-old dad was diagnosed with MDS in 10/07, presenting with an HgB of 4.6. He has since been diagnosed with MDS/MPD overlap (with myelofibrosis). We have been told that clinically his disease acts more like MDS, though if you view the bone marrow in isolation you see he has marked fibrosis. He does not have an enlarged spleen, etc., that might accompany the myelofibrosis.

He has received bi-weekly transfusions of 2 units each time since the beginning (4 units per month). He has no chromosome abnormalities as per his last bmb in July. He tried procrit in the beginning, etc., then Revlimid, with no response. He recently went through 5 rounds of Vidaza, also no response. He has been getting more and more tired and will from now on, I believe, receive 2 units every week. He goes for his next bmb in January. He has a significant cardiac history, having had a massive heart attack in 2002 and atrial fibrillation/some kind of electrical problems around the time this all started.

My dad’s doctor is going to stop the Vidaza because he is not responding and it is only making him feel terrible. His last cycle/round was about 3-4 weeks ago. He would’ve started his 6th this week. We are told the next step is probably a clinical trial.

I have seen many posts where people have said they received lots of transfusions over many years, that they can live like that for a long time, etc., but then I see the “survival rates” with transfusion dependence and I just don’t know, particular with other conditions involved like problems with the heart. Any thoughts on all this would be greatly appreciated. I just want to be realistic and get a sense as to what might be expected.

Thank you so much for your help.

[Mary4Mike]

Amy,

People can live a long time just receiving transfusions, however, you must keep track of his ferritin level. This will rise with each transfusion and if it is not removed, over time it can do damage to different organs, including the heart. The iron can be removed by Exjade, an oral prescription or Desferral (sp?) an IV medication.

Let us know what is happening and please know that everyone is part of this forum to help each other.

[choijk]

Amy,

Wow, I had the same thoughts today and I was going to write a post about this. My father, then age 71 yrs old, was diagnosed with MDS last Jan 2007. There was indication on his BMB that it was MDS/MPD, however with more characteristics of MDS. From the MDS category, he has RCMD. His only BMB was in Jan 2007.

Since then, we’ve tried Procrit – no response. We’ve also tried Revlimid for 5 ddays – dad got bad reaction. Then Vidaza for 5 months via IV, with no response but only caused his plts to drop.

Since Jan 2007 until now, he has been rbc transfusion dependent receiving approximately 1-2 units every two weeks. His hgb ranges around a 6.4 or so, and our hematologist only transfuses him to the point he is above 8.0.

As far as cardiac problems, my dad has no history of it. Instead, he just recently started taking his blood pressure medication as his BP is usually around 142/75 or so.

Currently, he is on Exjade 1500mg daily.

I , too, would like to know how long a person can stay just on transfusions. Is there anyone on this forum that is just on transfusions and no chemotherapy? If so, how long have you been transfusion dependent, and for how long?

God bless to everyone on this forum. Happy Holidays.

[Author]

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