Duration of Vidaza Post successful outcome

[joesmith]

Hello fellow bloggers,

I am creating this new thread to gather information on what is the right duration for Vidaza AFTER the outcome has been successful after 6 to 8 monthly cycles. I understand it could take anywhere from a few months to several months before Vidaza starts working depending on the patient, the severity and type of MDS, etc. My post relates to the duration of Vidaza AFTER SUCCESSFUL outcome post 6 to 8 cycles. My question specifically is should Vidaza be continued indefinitely as long as it is working and the patient is tolerating it well OR should it be discontinued after 6 to 8 cycles?

I have heard/read that Vidaza and Dacogen are often continued until they stop controlling the MDS, side effects prevent their use, or stem cell transplantation, if appropriate. I have read of one case where someone who had almost 100% remission with Dacogen after 6 cycles of Dacogen has continued on monthly doses of Dacogen for over 5+ years continuously and still going strong. However I have not heard much on the duration of Vidaza for patients that have had successful outcomes after 6 to 8 cycles. Please share your insights/thoughts/research. Thank you.

[Birgitta-A]

Hi Joe!
Here are two abstracts about hypomethylating agents (Vidaza/Dacogen).
https://ash.confex.com/ash/2014/webp...aper76283.html
https://ash.confex.com/ash/2014/webp...Paper74938.htm
Kind regrds
Birgitta-A

[bailie]

Joe,

Some considerations;

1) What is the plan if/when Vidaza loses effectiveness?
2) Is a very good donor readily available?
2) What is the health status (besides MDS) of the person?

If a SCT is in the plan, it is important to be in the best health possible at the time of transplant.

[slip up 2]

Hi Joe....

My husband was on Vidaza.....it worked very well for about 8 months.....then stopped working, all counts started falling, he died 7 months later......

Vidaza works for some for months or even a few years for others.....some it does not work at all......it is not a cure for MDS......

Kate

[Susan]

I'm so sorry you lost your husband. I'm glad you're here with us anyway, very kind of you.

[joesmith]

Originally Posted by slip up 2

Hi Joe....

My husband was on Vidaza.....it worked very well for about 8 months.....then stopped working, all counts started falling, he died 7 months later......

Vidaza works for some for months or even a few years for others.....some it does not work at all......it is not a cure for MDS......

Kate

Hi Kate so sorry for your loss. Thanks for sharing your experience. This is a very stressful time for us and hence the delay in response.

[joesmith]

Originally Posted by bailie

Joe,

Some considerations;

1) What is the plan if/when Vidaza loses effectiveness?
2) Is a very good donor readily available?
2) What is the health status (besides MDS) of the person?

If a SCT is in the plan, it is important to be in the best health possible at the time of transplant.

Hi Bailie - This is a very stressful time for us and hence the delay in response. Very good questions.

1) It is my understanding that regular intensive chemotherapy is the next step if Vidaza fails.
2) No we do not have a donor lined up. In fact we are not even sure if SCT is an option for my mother see response (3) below.
3) My mom is a Stage IV Breast Cancer survivor and her current condition is secondary MDS as a result of the chemotherapy. Initial assessment of Doctors is that she may not be a qood candidate for SCT

Appreciate your insights

[joesmith]

Originally Posted by Birgitta-A

Hi Joe!
Here are two abstracts about hypomethylating agents (Vidaza/Dacogen).
https://ash.confex.com/ash/2014/webp...aper76283.html
https://ash.confex.com/ash/2014/webp...Paper74938.htm
Kind regrds
Birgitta-A

Thanks Birgitta

[mausmish]

Joe,

Experience with my oncologists indicates if transplant is recommended, stay on Vidaza as long as it is working until donor can be found and other transplant criteria met. If transplant is not an option, stay on Vidaza as long as it continues to work but plan ahead for future - cannot predict when it will stop working, months or years. Watch for new treatments/clinical trials.

Karen

[joesmith]

Originally Posted by mausmish

Joe,

Experience with my oncologists indicates if transplant is recommended, stay on Vidaza as long as it is working until donor can be found and other transplant criteria met. If transplant is not an option, stay on Vidaza as long as it continues to work but plan ahead for future - cannot predict when it will stop working, months or years. Watch for new treatments/clinical trials.

Karen

Hi Karen - We are really in a catch-22 situation. The Vidaza does not seem to be working as well as we had hoped even after 5 cycles and given the extremely low blood counts the 6th cycle has been delayed. Additionally transplant is not recommended in my mom's case. Its almost like we have hit a brick wall and have no options.

[mausmish]

I'm sorry to hear that, Joe. I was one of the lucky for whom Vidaza worked well and fast. Have you checked for any clinical trials? https://clinicaltrials.gov?

[julielucas]

Hey Joe,
Sounds like your Mom and my husband are going the same route. He has secondary MDS due to previous chemo and is not a good candidate for SCT. He went through prednisone, then Vidaza for 6 cycles. His counts improved then fell hard. He started on Dacogen but only completed one cycle before a fever of 103 sent him to the hospital. His second BMB after Vidaza did show his blasts had gone down from 5% to 1% so that's good. He is high risk for developing AML but doesn't seem to be going that way so far. I've read studies that say following Vidaza with Dacogen does not really produce stellar results but there's a guy on this forum who is doing very well on Dac. Every one reacts differently with MDS and treatments. Hubby's oncologist told him he would be on Vidaza for the rest of his life if it worked. But it didn't. She also never said how long "the rest of his life" would be. I know there's no exact prognosis but I am making an educated guess that it's not going to be a long life. I'm not trying to discourage anyone or be a bummer but we have to be realistic. We take every day as it comes- some are good- some not so good. I hope your Mom is happy and loved. That's all that really matters.
Julie