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MDS Myelodysplastic syndromes

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  #1  
Old Sun Aug 18, 2013, 10:54 PM
vikasgoyal vikasgoyal is offline
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Clinical Trial

My dad is getting transfused with red cells every 6weeks which is really hampering his quality of life. Unfortunately we have not found any good treatment available that can help his hgb counts improve. Rest of his counts have remained stable and he his able to lead his normal life untill it gets to a point where he needs to get transfused. He lives in India and we do not have many clinical trials available there. What is confusing to me right now are couple of questions:

1. Should he try clinical trials at this stage? If yes, being an indian citizen is there a possibility for him to enroll in any of the clinical trials in US ?
2. Is there any low toxic treatment available to improve his hgb?
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Father 72, diagnosed MDS RCMD June 2011. HGB 5.5, WBC 7.2, Plt 400 Cytogenetics Normal. Blast cell count 2% ( July 2012 ). Currently on Danazol, Ferritin 750
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  #2  
Old Sun Aug 18, 2013, 11:33 PM
triumphe64 triumphe64 is offline
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Does he possibly have pure red cell aplasia? It is treated quite differently than MDS.

It only affects the red cells and is very rare. If I understand what you are saying, the red cells are the only problem.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #3  
Old Mon Aug 19, 2013, 03:54 AM
Birgitta-A Birgitta-A is offline
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Clinical trials

Hi vikasgoyal,
As far as I understand your father has low risk MDS and only needs txs every 6th week. Most patients with with these symptoms get supportive therapy like txs, EPO and iron chelation drugs like Desferal or Exjade. Then your father is getting Danazol too.

Has his doctor not discussed iron chelation? Some patients get increased HGB when the ferritin level decreases eventually due to less oxidative stress in the bone marrow? The ferritin level should not exceed 1000.

He could try Thalidomide (about 30% respond) or Revlimid (about 60% of patients without chromosome aberrations respond). None of these drugs are low toxic but I have tried both in very low doses with positive effects with low neutrophils (treated with Neupogen) as the only adverse effect.
Kind regards
Birgitta-A
74 yo, dx MDS Interm-1 2006. Supportive therapy until 2010 when I started to take Thalidomide + Prednisone. Transfusion independent during a little more than 2 years. Started Revlimid + Prednisone July 2013.
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  #4  
Old Mon Aug 19, 2013, 09:56 AM
vikasgoyal vikasgoyal is offline
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He is taking wheatgrass which helped him reduce his ferritin from 2500 to 750 in couple of months. I hope this trend continues. He got his BMB done twice and they confirmed MDS RCMD everytime. One of the doctors told us that for non del 5q cases revlimid might work for only about 20% of the cases. Is that true?

Secondly, is clinical trial a good option if he can be accepted in US?
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Father 72, diagnosed MDS RCMD June 2011. HGB 5.5, WBC 7.2, Plt 400 Cytogenetics Normal. Blast cell count 2% ( July 2012 ). Currently on Danazol, Ferritin 750
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  #5  
Old Mon Aug 19, 2013, 11:10 AM
triumphe64 triumphe64 is offline
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Quote:
Originally Posted by vikasgoyal View Post
He is taking wheatgrass which helped him reduce his ferritin from 2500 to 750 in couple of months. I hope this trend continues. He got his BMB done twice and they confirmed MDS RCMD everytime. One of the doctors told us that for non del 5q cases revlimid might work for only about 20% of the cases. Is that true?

Secondly, is clinical trial a good option if he can be accepted in US?
Clinical trials are all listed at:

www.clinicaltrials.gov

See is any fit.
__________________
Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #6  
Old Mon Aug 19, 2013, 02:58 PM
Birgitta-A Birgitta-A is offline
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Revlimid

Hi vikasgoyal,
Very positive result with wheatgrass!

I have results for many studies of Revlimid in non 5q MDS patients - they all show very different results. Here is one with 57% response rate for patients with normal chromosomes: http://www.nejm.org/doi/full/10.1056/NEJMoa041668
Kind regards
Birgitta-A
12p- and X- chromosome aberrations
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  #7  
Old Mon Aug 19, 2013, 08:46 PM
vikasgoyal vikasgoyal is offline
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Hi Birgitta-A,

Thanks for the response. Does revlimid has more significance in improving plt or hgb?

Thanks,
Vikas
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Father 72, diagnosed MDS RCMD June 2011. HGB 5.5, WBC 7.2, Plt 400 Cytogenetics Normal. Blast cell count 2% ( July 2012 ). Currently on Danazol, Ferritin 750
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  #8  
Old Tue Aug 20, 2013, 02:31 PM
Birgitta-A Birgitta-A is offline
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Revlimid

Hi vikasgoyal,
Revlimid is used to increase HGB. Myelosuppression (suppression of the bone marrow) is a common adverse effect for patients with the 5q chromosome aberration and low platelets initially is a sign of positive response for these patients.

In non 5q patients myelosupression often isn´t so severe.
http://bloodjournal.hematologylibrar.../1/86.full.pdf

Revlimid should be combined with Prednisone (30 mg/day) in tapering dose for better response.
Kind regards
Birgitta-A
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  #9  
Old Tue Aug 20, 2013, 10:35 PM
vikasgoyal vikasgoyal is offline
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Thanks..Great info
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Father 72, diagnosed MDS RCMD June 2011. HGB 5.5, WBC 7.2, Plt 400 Cytogenetics Normal. Blast cell count 2% ( July 2012 ). Currently on Danazol, Ferritin 750
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