Vidaza disaster

[Debster01]

I am very upset...my dad has MDS and 12% blasts. He finished round 2 of Vidaza in early Dec. He has been hospitalized since Dec 28th for crashed counts-very low platelets, .7 white count, etc. Tomorrow he is coming home to die-drs say they can do no more. I DO NOT GET THIS.....can anyone help? Deb

[Ruth Cuadra]

Deb,

Sorry to hear that things are so dire for your Dad. Even if he is not able to travel, you might consider consulting with another doctor/hospital for a second opinion on what options may still be available. Phone consultations with experts at Fred Hutchinson (Seattle) or MD Anderson (Houston) or any major center near you might shed some more light on your Dad's situation. Take a look at our list of U.S. Treatment Centers by State. At 12%, his blast count still places him in the MDS category rather than the leukemia category but leukemia-type treatments may be called for.

Hope this helps.

Ruth Cuadra

[Wayne O'Shana]

Hi Deb:

Did those idiots send him home with those counts? This is a serious emergency! Get your Dad to an ER at once and get him a tx w/leukocyte reduced and irradiated PRBC. Don't let them tell you it "isn't necessary" or "not indicated" to use treated blood. Stand your ground and demand it. That's what I had to do when my counts crashed and I ended up in the ER at midnight w/Hgb 5.0 and a super jerk ER doc. I won't repeat the language I had to use to get my point across, but I can report that every bag of PRBC I ever received was treated. With tx and EPO+G-CSF your Dad might be able to carry on to try a different drug. Could there be something else in his dx that made them give up on him? (Aside from stupidity.)

I didn't notice your location ... a listmate in your area may have some good advice for finding a hem/onc with MDS experience. Were you able to follow-up on Ruth's comment about going to a center of excellence, or at least trying a phone consultation if they are too far away? Please keep us posted.

[Debster01]

Hi Wayne....unfortunately it is much too late...he is at home with hospice care and near death. The dr (he had been hospitalized in Topeka,KS) said that the Vidaza killed off his bone marrow and that there was nothing else they could do. He was in the hospital for three weeks, getting platelets every day and blood about every other day. He was also getting neupogen shots with no effect. His last Vidaza shot was Dec 3rd, and he has been home from the hospital for three weeks. However, the interesting thing is that the dr said he would last less than a week-and it has been 3. Since he is still here-I threw a fit and asked the dr to order a blood test to see how his counts are.(the hospice nurse can do that) He wasn't going to order it and I had a cow and they did the draw today. Why would doing a blood draw be such a problem?? He has not had any transfusions of any kind in three weeks-he is super weak but how is it that he is still here? His platelets at discharge were between 2-5.Either way my mom and I want to know what his numbers are. I still can't believe 2 rounds has done this to him...I am so sad. I am not sure why the drs gave up so fast-he has had blood count problems for years but I felt they gave up too soon...

[Wayne O'Shana]

Hi Deb:

I'm sorry it has turned out so badly. I think the doc is an idiot, and he should be fired. Is there any reason why he hasn't been fired? As long as your Dad has even a spark of life I don't think you should give up because of anything you hear from that clod. He has lived over three times longer than predicted. Please try to find a hem/onc who has a clue ... you said it is too late, but finding the right hem/onc might change the whole picture. You had to assert yourself to get a blood draw, so now is the time to get into a super assertive state and fight for what you think is best for your Dad. I still think he could use some blood.

Best wishes and hoping for the best.

[Debster01]

I agree...I am so angry over that blood draw deal. We should have never had to justify why we wanted it. His numbers are: white count .9 platelets 6 and hemoglobin 6.4. Disaster. Worst of all my dad has begged to die, he is suffering and just wants to go. I hate this but I appreciate your support...Deb

[terri]

Deb, I'm so sorry to hear about your Dad. Your story sounds similar to my Mom's...she was in ICU for 3 weeks, getting platelets. She also had some other stuff go on but in the end it was the Vidaza that killed her. Her doc kept saying the side effects she was having were just coincidences...not side effects. He finally said they were side effects when it was too late. He sent her home to die, which she did just a week later. My Mom said a few times she felt like the doc was using her as a guinea pig - and she know he was killing her.

[Debster01]

Hi Terri-I am so sorry about your mom-our stories are so very similar...I wonder what the Vidaza does to do this when it seems to help so many people. Don't you wonder what the dr was thinking when he told you all they were not side effects? Like your mom wouldn't know better will keep you in prayer...Deb

[terri]

Thanks, Deb. I certainly wish I knew what the doc was thinking!