Vidaza, relapse, and counts

[katgio50]

My husband relapsed in July with AML following his Nov. 2013 transplant. He went through induction and his transplant with minimal problems and thus we were devastated when he relapsed. He received one dose of Vidaza in mid-July and his counts have never rebounded and in fact have continued to drop. His doctor went ahead and started the second round yesterday even though the anc is very low as he doesn't think we have many options at this point. Any thoughts or suggestions from anyone? We are willing to do anything or go anywhere for treatment.

[sbk007]

So sorry to hear of this. Don't give up on the Vidaza just yet. It takes a few cycles to get it going and its typical to see the counts drop after the first cycle. I mean counts tend to get worse before they get better. It might take a few cycles to get it going. I think what the Doctors are telling you is that given your husbands age its too risky to try another transplant so the task at hand is to control his relapse and keep him comfortable. Sorry you have to go through this and I hope everything works out. These things are often as hard or if not harder on the family and caregivers than it is on the patient.
All the Best - Steve

[katgio50]

Thank you Steve. We were aware of course that Vidaza makes the counts go down but it has been over 40 days since the first cycle began and the counts are going the wrong direction. We are kind of numb right now . My husband has an amazing outlook and will continue to fight this insidious disease.

[sbk007]

I totally understand numb. I sincerely hope things get better for you and your husband. - Steve

[DanL]

some facilities are trying to either vidaza or dacogen over a 10 day period instead of the normal 5 or 7. for some reason, reducing the dose and doing it over a longer period sometimes has a better effect of promoting cell differentiation and lowering the marrow suppression. It may be worth discussing as an alternative. This is sometimes followed by a DLI to varying degrees of success.

[bailie]

I have wondered if there are studies about Vidaza as a preventative to relapse? And, when the preventative measures started? My doctor was not too excited about the thought.

[sbk007]

Baille,
Yes. Vidaza is used at some facilities post transplant for up to a year. I think they use a lower dose. I know Robin Roberts had it and so did "Masmish".
I don't know if there's any clinical evidence that shows it prevents or prolongs relapse.
Pretty sure they start it a month or 2 post transplant but that's only from one persons experience.

All the best with your upcoming transplant.

[joesmith]

Originally Posted by katgio50

Thank you Steve. We were aware of course that Vidaza makes the counts go down but it has been over 40 days since the first cycle began and the counts are going the wrong direction. We are kind of numb right now . My husband has an amazing outlook and will continue to fight this insidious disease.

Hi katgio50 - Trust me when I tell you I can imagine what you are going through as my mom is also suffering with the extremely low blood counts post her first round of Vidaza. My mom's case is different from your husbands and you read it my other posts. However the one thing in common is that my mom's blood counts are at a scary low even after 28 days of Vidaza with platelets of 4000 (which mean they are as good as zero), ANC below 400, and Hb around 8.5 (only because of multiple RBC transfusions). My mom cannot also accept platelet transfusions as he body rejects it. The doctor that is treating her has gone ahead and started the second round of Vidaza on Day 29 and we are carefully monitoring her situation for fever, bleeding, etc. The hope and prayer is that after the second round she will get some relief.

While you have not provided any specifics of your husband's count and also given that everyone's body responds differently to any treatment, I am not suggesting that you should ignore the low blood counts. However I would ask that you discuss and consider moving forward with the second round without any further delay (40 days is quite some time when compared to the recommended 28 day cycle). You will need to be fully aware and extremely careful with the risks of injections and/or bleeding but with the right doctor and support it may be worth the try just given how limited options exist for this dreadful condition.

The extremely low and sometimes unexplainable risk and fall in blood counts during the first two or three cycles of Vidaza is quite typical and your husband is not alone. Please stay strong and good luck. Feel free to send me a private message if you feel to do so.

[katgio50]

Thank you joesmith for the message. The doctor did go ahead with the vidaza this week. My husbands anc was actually .3. His hgb and platelets are low, but not dangerously low at the present time. His transplant doctor (he had a transplant last Nov. that has relapsed) was reluctant to allow neupeogen shots to be given. It is my understanding that some researchers believe nuepogen also stimulates blast cells. However, he has now given the ok and he began those shots today.
I am sorry about your mother and the problem with the platelets. I have not heard of that before.
One thing that I think we have all learned from this disease is that everyone is different and reacts differently to drugs and treatments. That being said, we can all learn from one another and support one another. Thanks again.

[DanL]

Joesmith,

Have they tried using HLA matched and blood type matched platelets for your mother? The HLA typing takes a little longer to order from the blood banks, but usually those will stick when the others don't.

[joesmith]

Originally Posted by DanL

Joesmith,

Have they tried using HLA matched and blood type matched platelets for your mother? The HLA typing takes a little longer to order from the blood banks, but usually those will stick when the others don't.

Hello DanL - We have tried blood type matched platelets but in vain. Have not tried the HLA matched platelets yet but will discuss this with my doctor. We just got the latest CBC reports yesterday and the platelets are still at a dangerous low level of 4000 and ANC at about 170. The doctor does not want to give Neupogen right away and she will be reevaluated after 3 days for potential hospitalization given the risk of infections and bleeding. Thanks for sharing your insights.

[DanL]

I somehow missed some of the questions on this post, but there has been some success with Vidaza and DLI post-transplant and may even represent a cure. Here is a slightly older article, but it gives a little insight.

http://www.mdsbeacon.com/news/2011/1...ents-ash-2011/

I am currently on my second cycle of Vidaza after learning that about 4% of my cells have chromosomal damage. Good results after cycle one, currently scheduled for 4 cycles before next bmb, but that will change if results don't continue.

[al harp]

Treatment with Vidaza (as well as other meds listed) has not lowered need for frequent transfusions. Has anyone had success with dacogen after Vidaza didn't work?

[Birgitta-A]

Hi Al!
Here is a study about Dacogen after Vidaza. http://www.ncbi.nlm.nih.gov/pubmed/25263320

As you can see 5 of 25 patients achieved stable disease. Since we still don't know which patients that will respond we can always try Dacogen.

Otherwise patients that fail Vidaza are recommended to participate in clinical trials for example with Rigosertib. http://www.mdsbeacon.com/resources/m...2013/abs/1527/
Kind regards
Birgitta-A