MDS

[Gayle]

Hello, my name is Gayle and my husband Bob was diagonsed with MDS 4 1/2 years ago. He had never been sick and we were spending the winters in Texas and 3 days before we left he started feeling sick. Cold like symptons. We came home and he started getting worse. Went to the doctor and they said he needed to go to a lung spec. We went, they tried to take fluid out of his lungs but nothing would come out. They put him in the hospital and diagonsed him with Klebsellia virus. You only get this if you are a drug addict,(which he was not) or a diabetic, (which we found out he was). They had to cut open his lung and scrape out his lung. This viral infection does not respond to any antibotics. They also because of his being a diabetic and his blood counts durning this surgery determined that he had MDS. He started out on Thalimoide, then he did Vidazza for two years and is now starting to do Dacogen. He had had one round and supposed to start the second round this coming Monday. His last blood count was: WBC 0.8 RBC 2.48 HGB 7.1 and PLT 11. Last blood count his platlets were 0!!! He gets one unit of platelets every week and two units of blood. The last two weeks the blood only lasted a couple of days and he's back to being short of breath, no energy and weak. He also gets a Procrit shot weekly. My question is how long do you have to be on Dacogen before seeing any progress? He only has about 3% blasts and has maintained that for the last 4 1/2 years, but the transfusions lately don't seem to be doing him any good. Is this normal with Dacogen? If anyone has any info I would appreciate hearing from you. Thank you.

[Linda]

Dear Gayle,
My husband (also Bob) was diagnosed 18 months ago with 19% blasts. He was on Vidaza for a year, and now just about to start 2nd round of Dacogen. His counts are not as bad as your Bob's, but the Doc said we might see some improvement after 3 rounds.
I wonder if your Doc's had considered a BMT since his blast count is low.
My Bob is at 20% now, he was lower last summer and fall. So now the docs want to do a BMT and are using Dacogen as an agressive treatment to get his blasts down to at least 5%.
Sorry I don't have any answers for you.

[Neil Cuadra]

Hi Gayle.

Where is Bob being treated? Is he in the age range where a transplant is a possibility?

Dacogen has been mentioned in a few other Marrowforums threads. You can find them by going to the search page and typing "dacogen" in the first text box.

[Tom M]

Hi Gayle,

I was on Revlimid, and am still taking this medication, and my counts got dangerlously low. My doctor took me off of the chemo until my counts bounced back up to an acceptable level, whick took about 4 weeks. When my counts dropped, I was getting transfused weekly with not much of a change in my hgb, usually only a point rise. For me, coming off the chemo made a difference and my counts slowly recovered. I was placed back on Revlimid, but at a lower dosage, and seem to be tolerating it much better.