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MDS Myelodysplastic syndromes

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  #1  
Old Mon Apr 8, 2013, 10:03 PM
bgagnon bgagnon is offline
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Location: Boston, mA
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My dad was just diagnosed with MDS

My father was just diagnosed with a high risk form of MDS. ( RAEB - 1 ). This is all new to me so excuse me if I don't get the terms correct or confuse anyone on what I'm saying. This all happen so fast so I'm trying to get as much research as possible. I believe his blood count is as follows:
Hemoglobin - 8.2
White - 2.6
Platelet- 117
Bone Marrow Blasts 5 %

The revised (IPSS-R ) point count is 6
This past friday my dad had a port installed in his chest and had his first blood transfusion. He then got called in today and had 2 more blood transfusions.
The father is starting a clinical trial next Monday. ( A randomized Phase II study of Azacitidine in combination with Lenalidomide Vs Azacitidine Alone Vs Azacitidine in combination withVorinostat for higher risk Myelodysplastic Syndromes.

My dad currently lives in Farmington, Ct where he is going to St. Frances in Hartford.

Any feedback or recommendations would be greatly appreciated.
Thanks so much.
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  #2  
Old Tue Apr 9, 2013, 11:47 AM
Neil Cuadra Neil Cuadra is offline
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bgagnon,

It sounds like your father is getting the appropriate care: blood and marrow tests, diagnosis, classification, immediate supportive treatment (transfusions), and treatment with a combination of drugs known to help many MDS patients. Since he'll be in a clinical trial, his condition will be closely monitored, which is good because no two MDS patients are exactly the same and responses to treatment vary as well.

The MDS Patient Handbook you can download from the MDS Foundation and the MDS information packet you can get from the AA&MDSIF can provide you with detailed overviews of MDS and its treatment.

You're doing exactly the right thing to help your father by reading and learning about MDS. That's what will help you understand what the doctors report and what they recommend at each stage. Let's hope the right combination of drugs will put your father's MDS into remission.

Are you able to make the trip down to Farmington to help your father in person and talk to his medical team directly, or are you having to help him from afar?

May I ask your father's age?
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  #3  
Old Tue Apr 9, 2013, 02:41 PM
Birgitta-A Birgitta-A is offline
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Vidaza in combination with Revlimid or Vorinostat

Hi bgagnon,
Very interesting study!

Vidaza in combination Revlimid with has showed 72% response that is very high - Vidaza as a single drug helps a little more than 50% of the patients.
http://www.ncbi.nlm.nih.gov/pubmed/22915641

Vidaza in combination with Vorinostat showed 30% response but many of these patients had AML and the MDS patients had other severe diseases.
https://ash.confex.com/ash/2011/webp...aper40324.html

Remember that when a patient participates in a trial it is important that he/she is allowed to get the supportive therapy he/she needs for example Neupogen if the WBC are low.

These three drugs are approved but only Vidaza is approved for MDS patients without the chromosome aberration 5qdel. If your dad of some reason can't continue in the study his doctor perhaps can give lower doses of Vidaza in combination with Revlimid or Vorinostat off record.

Hope your dad will have positive effects of his treatment!
Kind regards
Birgitta-A
74 yo, dx MDS 2006, supportive tharapy until 2010. Since then good response to Thalidomide + Prednisone
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  #4  
Old Tue Apr 9, 2013, 08:46 PM
bgagnon bgagnon is offline
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Dad

My dad is 67. He has been positive the whole time but I know he is in so much pain. He was supposed to get his hip replaced back in December but he was so anemic. Thanks for responses and positive thoughts.
I hoping and praying for the best. Please let me know if you have any suggestions.
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  #5  
Old Tue Apr 16, 2013, 12:50 PM
bgagnon bgagnon is offline
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Clinical Trial

My dad started his first treatment yesterday. The prior days he was suffering from a lack of sleep (didnt sleep for 3 days) and extreme pain. His port kept on bleeding until he finally had to make a emergency hospital visit to get it stitched up again.
I'm praying that he will start to feel better after his clinical trial. He is also getting blood transfusions afterwards. So I imagine his blood levels are low.
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  #6  
Old Tue Apr 16, 2013, 02:54 PM
Birgitta-A Birgitta-A is offline
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Treatment

Hi bgagnon,
Too bad with the pains that prevent sleep - when we sleep the immune system is repaired so it is important that we get some sleep. Most painkillers can decrease platelets but morphindrugs are supposed to be OK for the counts. Can't your dad ask for some kind of morphin like oxycon?

Hope the port will function.

Vidaza and Revlimid often initially decrease counts. If it is possible you should try to get copies of your dad's lab results so you can follow the results.
Kind regards
Birgitta-A
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