Doctor wants to stop Vidaza treatment

[Judy W]

My husband is a young 76 years old and was diagnosed with MDS in June of 2009. He is RAEB - 1 and has just had another bone marrow aspiration so we will know results next week.

He is tx dependent - 2 units HG weekly and 2 platelets.

He has a CBC weekly and the latest report is: HG 94 (fluctuates from 83 - 95) Platelets 15 ( fluctuates from 5 - 15) WBC - 1.3, RBC 3.4, Neutrophils .4 (very low for the past 3 months)

He just finished his fourth round of Vidaza and we have not seen any positive results but I understand it may take up to 6 sessions before this might happen. We are prepared to go the full round but our oncologist has stopped the treatments saying he thinks they are not working and doesn't think we should continue. We disagree.

We live in Canada so it is difficult to find one let alone two doctors that are willing to take on new patients. But we will fight this if we have to.

My husband is still very active although he tires easily. He putters in the garden, trap shoots, goes to the casino, plays cards, we entertain often and have a large family - he is not prone to infections even though we have small grandchildren coming and going - he has a great sunny attitude.

We know how serious his illness is and there is no happy ending...but we want to keep going as long as possible

please give me your thoughts on this - should we get another opinion? or do his counts sound like the illness has progressed? what results should we be seeing at this stage?

will it make a difference to have a delay longer than 21 days between treatments? will the Vidaza still be effective if we wait another 4 weeks?

I read your postings and appreciate all the useful information each one of you has given - a blessing to have a support group online as there is none other in our area - Vancouver, Canada

[Birgitta-A]

Hi Judy,
You seem to be very well informed already but I will tell you what I think about your husbands treatment.

I should not try to find another doctor but ask his doctor why he/she thinks treatment not should continue when experts report that response can take up to 6 cycles (actually more). Normally Vidaza (azacitidine) is evaluated after 6 cycles.
"In all three studies, the median number of cycles from the first treatment with azacitidine to any response (complete response, partial response, or hematological improvement) was three cycles (range, one to 17 cycles). Although 75% of the responders achieved a response by cycle 4, the other 25% achieved a response as late as cycle 17. The majority of responders (90%) achieved a response by cycle 6. Best response was observed, on average, two cycles after initial response and lasted for a median of five cycles."
http://jco.ascopubs.org/cgi/content/full/24/24/3895

It is very common to delay treatment if the counts are low without less effect.

If my neutrophils were 0.4 I should ask for Neupogen at once - supportive treatment is very important when you get chemo.

Hope your husband can continue treatment with Vidaza and respond!
Kind regards
Birgitta-A
71 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal and Exjade for iron overload, Neupogen 3 injections/week for low WBCs, Thalidomide and Prednisone for bone marrow fibrosis

[rose mcmillin]

Hi Judy, Just letting you know that I agree with Brigitta. Sometimes it takes longer for some people to respond. My husband has been on Vidaza for 2 years. His numbers still tank sometimes but we take a little break and get right back on Vidaza. His platelets are at 16 right now. Hopefully, they will come back up and he will continue his treatment. This disease is much like a roller coaster ride. Just understand that sometimes you just have to become demanding and pushy. It should be a decision made by all of you. Take care and feel free to ask any questions that you may have. Hopefully you will be able to remain on Vidaza. Stay strong and take care. Sincerely, Rose