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MDS Myelodysplastic syndromes

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  #1  
Old Fri Jun 26, 2015, 12:10 PM
italianburrito italianburrito is offline
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Update and some insight would be appreciated

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?
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Daughter of father diagnosed with MDS RAEB-II intermediate risk due to normal cytogenetics. Blasts at 13% peripheral blood at diagnosis with no cytopenias. 6 cycles on Vidaza then on to SCT at Duke. BMT from my brother and now showing signs of relapse. DLI in the works.
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Old Fri Jun 26, 2015, 01:52 PM
DanL DanL is offline
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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.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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  #3  
Old Fri Jul 3, 2015, 09:49 PM
traceyn11 traceyn11 is offline
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So sorry to hear the news!

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
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Tracey, mom & wife,age 58, dx MDS RAEB-2 4/15, normal cytogenetics, Update: SCT cancelled. Blasts at 67%. New dx AML.
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  #4  
Old Tue Jul 7, 2015, 10:40 AM
italianburrito italianburrito is offline
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Quote:
Originally Posted by DanL View Post
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.
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Daughter of father diagnosed with MDS RAEB-II intermediate risk due to normal cytogenetics. Blasts at 13% peripheral blood at diagnosis with no cytopenias. 6 cycles on Vidaza then on to SCT at Duke. BMT from my brother and now showing signs of relapse. DLI in the works.
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  #5  
Old Tue Jul 7, 2015, 10:43 AM
italianburrito italianburrito is offline
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Originally Posted by traceyn11 View Post
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
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Daughter of father diagnosed with MDS RAEB-II intermediate risk due to normal cytogenetics. Blasts at 13% peripheral blood at diagnosis with no cytopenias. 6 cycles on Vidaza then on to SCT at Duke. BMT from my brother and now showing signs of relapse. DLI in the works.
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