Should Vidaza Reduce Transfusions?

[LizR]

My husband is starting his 6th cycle of Vidaza and gets Aranesp. It seems the goal of the Vidaza is to keep from progressing to AML and should reduce or eliminate the need for transfusions. If PBRC transfusions are needed more often, does that mean it's not working? Could his blast count be lower or steady even with the increased transfusions? He has a BMB scheduled for later in July.

[Birgitta-A]

Hi Liz,
You know most patients that are responding to Vidaza have done that after 6 cycles but there are patients who are responding later. Remember that only a little more than 50% will respond.

As you suspect it is not a positive sign that your husband needs txs more often.

Has his doctor discussed a Sten Cell Transplantation?
Kind regards
Birgitta-A
74 yo, dx MDS Interm-1 2006. Supportive therapy with txs, Desferal and Neupogen until 2010. Since 2010 positve results with Thalidomide + Prednisone.

[LizR]

Hi Birgitta-A,

We went to Mayo Clinic in AZ and they recommended transplant but Bob and his local Dr. weren't as convinced so we tried the Vidaza first. The local Dr. said 6 cycles and then a BMB to decide the next step. Bob just wasn't sure a transplant is worth the risk if the Vidaza was working or there were other options. Mayo did say the Vidaza would be a good bridge if he decided to go forward. There are just so many decisions and we are afraid to make the wrong ones. I'm glad you are all here willing to help!

[slip up 2]

Liz....whatever decision that the two of you make will be the right one for you....sometime we really overthink, when we are in this mess it does get confusing and clouded. You are very fortunate to be so close to Mayo in AZ, as they are heavily involved with MDS. Dr. Rueben Messa has been studying MDS for years.....if you google him there are some You Tube videos of him explaning what MDS is.
take care
kate

[Birgitta-A]

Hi Liz,
Very positive that your husband is treated at the Mayo clinic in AZ - as slip up 2 wrote that clinic is one of the best clinics in the world for our disease.

Hope the BMB will show less blast cells!
Kind regards
Birgitta-A

[LizR]

Thanks for responding! We did see Dr. Mesa at Mayo and the local test results go to him for review. Although he recommended immediate transplant, he respected Bob's decision to try Vidaza first. We will see him again after the BMB results. I'm glad you both think we made the right choice with Mayo.

Confused and clouded is a good way to put it. You can't compare blood counts because the treatment alters them but you can't stop the treatment to check. Either way we continue to learn all we can to make the right choices without "analysis paralysis". Your help makes us not feel so alone!