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#1
Fri Jul 15, 2011, 07:09 PM
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Stopped the Revmelid and very low platelets
Hi
I have been reading the forums fo ra couple years now as my mother has been fighting with MDS. I am so scared now and ready to jump into the conversation. She has been part of a trial with Revmelid but suddenly her platelets are very low (the other counts are OK). Is there anything she can do to raise the platelets? They have stopped the chemo and the exjade. She is transfusion dependent. How can she get the platelets back up? She has great care and is willing to ask for anything we can think of. Thank you for any insight. Mary 
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#2
Sat Jul 16, 2011, 01:07 PM
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A couple of years ago I attended an MDS workshop and met a fellow who was having trouble keeping his platelet level up. He siad the most help he got from his diet/nutrition was having one egg a day. Of course, YMMV as everyone is different but perhaps that is something to consider.
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%  ) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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#3
Sat Jul 16, 2011, 01:29 PM
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Promacta and Romiplostim
Hey Mary!
Sorry to hear aobut your Mom's platelets. There are a couple of drugs out there used to increase platelet counts: NPlate (Romiplostim) and Promacta (eltrombopag). I don't believe either is FDA-approved for MDS; they are used for ITP. But there are definitely trials of Promacta for MDS. I think the initial US trials for romiplostim in MDS went poorly; there don't seem to be any new ones recruiting patients on clinicaltrials.gov Give that your Mom is enrolled in a Revlimid trial, she might or might not be able to use Promacta, but it might be worth mentioning to her docs. Take Care! Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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#4
Mon Jul 18, 2011, 05:56 PM
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Thank you both!
The egg will be happening and I will ask about the drugs. I did read about them and how they were not approved for MDS. How woudl the Revmilid trail prevent her from that? SHe has stopped the trail due to the low platelets, wouldn't they like to see her back in. I think it sounds like it would be gret to be fabulously wealthy righ about now. Thank you Mary
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#5
Mon Jul 18, 2011, 06:31 PM
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another question
Hi Again,
So my mom just got her first blood test since going off the Revmelid. Her Hemoglobin is not good, 7 and her platelets are not good 16 (and that is down from 20 or so). I understand that the chemo drug could be the reason the platelets went down. Does anybody know how long before you should see them go up if that is in fact the reason they went down? Thank you Mary
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#6
Mon Jul 18, 2011, 10:26 PM
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Hey Mary!
A platelet drop is apparently pretty common with Revlimid. I found a summary of the study that resulted in its approval by the FDA for MDS and it indicates that 62% of patients had platelet drops and half had relatively severe platelet drops. This resulted in the dosing being interrupted in a lot of cases. The average time between having to stop the drug and the patient recovering enough to start it again was 28 days. Hope that helps. Take care! Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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#7
Mon Aug 1, 2011, 05:33 PM
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Is there anything to eat to boost platelets
hi
My mom's platelets are down to 9. Her Hmg is down to 7.4 She is goin gin tomorrow for a regular transfussion as well as platelets. Is there anything she can do to suppliment her diet inorder to encourage platelets? I know this is bad. She is going next week for another BMT. Most recently she was taken off revmelid but now a month later the platelets are not going up - they did a tiny bit but now they are down. Any hopeful advice is so welcome! Thank you mary 
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#8
Tue Aug 2, 2011, 12:09 PM
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