Update and some insight would be appreciated

[italianburrito]

Last friday we received devestating news that there is not a single match for my dad on the registry. We are an ethnic minority (Italian) thus makes it impossible to find a match. But I will not let this bad news bring us down because I am determined to help my dad and put him in remission. We are doing everything we can by calling all of our italian relatives and even the ones in italy to see if they are willing to join the registry to save my dads life. He is needing blood more freqently and his plts are dropping as well. Dr. M says this is normal and he anticipates it to be worse in the coming weeks with being transfusion dependent. His energy is low and has lost a lot of weight. For the people on Vidaza, when did your counts normalize? He has had 3 rounds so far. Do they ever? And when they do, does that mean he is in temporary remission?

[DanL]

Vidaza can take 6 to 9 cycles to reach its peak effectiveness. It is pretty common to go 6 cycles and evaluate. My first time on Vidaza, I only had two cycles and my blood counts dropped both cycles. When I did my last 6 cycles after transplant, my counts started recovering late first cycle. The unfortunate answer is that response and response time varies from person to person.

Blood counts getting worse before improving happens a lot, so it is really a matter of managing the side effects of low blood counts.

I wish you and your father the best of luck in searching out donors and finding treatment options that help.

[traceyn11]

I am so sorry that they are not able to find a single match for your dad! That's good that you are calling all your Italian relatives. I will be praying for a match for him. I hope he reaches remission on Vidaza.

Tracey

[italianburrito]

Originally Posted by DanL

Vidaza can take 6 to 9 cycles to reach its peak effectiveness. It is pretty common to go 6 cycles and evaluate. My first time on Vidaza, I only had two cycles and my blood counts dropped both cycles. When I did my last 6 cycles after transplant, my counts started recovering late first cycle. The unfortunate answer is that response and response time varies from person to person.

Blood counts getting worse before improving happens a lot, so it is really a matter of managing the side effects of low blood counts.

I wish you and your father the best of luck in searching out donors and finding treatment options that help.

DanL thanks for your response! Is this a common thing now to continue chemo after transplant? With RAEB-II I want him to be treated as agressively as possible (My dad agrees as well). The docotor as Duke said they will look one more time in Aug. before settling on the cord blood. Dr. M did a bone marrow biopsy and said he has improved but he isnt where he wants him to be. Blast <5% but severe dysplasia is still seen. But from what you are saying we still need to give the medication more time.

[italianburrito]

Originally Posted by traceyn11

I am so sorry that they are not able to find a single match for your dad! That's good that you are calling all your Italian relatives. I will be praying for a match for him. I hope he reaches remission on Vidaza.

Tracey

Thanks Tracey! I really hope this is the last hospital stay for high fevers! Very aggravating but you seem like a fighter which is awesome. I wish you the best of luck and keep us updated