Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

Vidaza

Tagged: Vidaza and remission

This topic has 5 replies, 3 voices, and was last updated 3 years, 8 months ago by Kathie Wolf.

Viewing 6 posts - 1 through 6 (of 6 total)

Author

Posts
August 25, 2020 at 5:29 pm #52723

Kathie Wolf
Participant

Has anyone reached remission with Vidaza or Decatabine and stopped it? Did it work when your labs started dropping?

August 31, 2020 at 2:51 pm #52760

Rita Altman
Participant

After 8 cycles we stopped Videza last month. Numbers stayed steady for the eight months but no improvement. Not sure what is going to happen now. Was hoping the mouth sores and skin infections were caused by the drop in platelets during Videza
(low was 14). Mouth sores have continued. Really bad today. Platelets were are 24 when we stopped. Will keep you posted as time goes on if you would like me too.

August 31, 2020 at 3:17 pm #52761

Kathie Wolf
Participant

Thanks Rita for your response. My husband had a great response to Vidaza, completely in remission currently after 1 year of monthly treatments. His labs have been stable for about the last 5 months. (Hemoglobin, platelets and white cells) White blood cells were the last to stabilize. Good luck, let me know how things go..,

September 8, 2020 at 10:12 pm #52819

Belinda
Participant

Thank you for your reply, it has given me hope! I’m currently on my eight round of Vidaza (azacitidine) every month for 7 days, and Aranesp injection every three weeks. I was told last that I could continue the rounds but as of right now the treatment was not helping. I continue to have blood transfusions as well about every 4-6 weeks. It really takes up you time during the day. I just don’t know how long this can go on, before nothing is working?

September 9, 2020 at 8:33 am #52823

Rita Altman
Participant

Brenda,
My husband last treatment was July 17. He has only had one precept shot and I have not noticed any changes In his health since stopping. We will be going back in two weeks and will check his levels and get another shot. I will keep you posted. Please feel free to message me. Good luck. Rita Altman.

September 9, 2020 at 11:28 am #52824

Kathie Wolf
Participant

After consulting with Stanford oncologist from their BMT unit, my husband has decided to stop Vidaza for awhile. His oncologist will monitor labs and use his bone marrow biopsies to guide further care. He is currently doing well. Will see how this all goes, uncharted territory per his oncologist.
Author

Posts