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MDS Myelodysplastic syndromes

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  #1  
Old Wed Apr 6, 2011, 03:27 PM
sophia68 sophia68 is offline
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Hello Everyone...Been a while.....

since I've been on this board....dad still going through the motions of living with MDS/RARS...For the past six months he has become more transfusion dependent requiring tx approx every 3 weeks. He recently started Revlimid (after treatment with Thalomid was unsuccessful and causing allergic reactions)...He has taken the revlimid for one full month so far and was late in receiving the next dose due to delays from his hematology office...(they're so ridiculous...always having to constantly be on top of them to do things..ugh!). He started taking his second dose of revlimid last week. He was tx on 3/30/11 and was also given a blood thinner injection in the stomach. This is the first time he has been given a blood thinner and I was wondering if this is a normal recurrance for tx dependent MDS patients?

Well wishes to ((((all)))).

Sophia
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Dad (83) DX w/MDS-RARS on 6/10/06.Prev treated w/Vidaza & Thalomid w/o success. Treated w/Decitabine w/some imprv discont after no resp. TX dep as of Aug'10 (evry 2-3 wks). Curr tkg Revlimid since Feb'11. Exjade since Apr'11. Recd lwr dsg decitabine on 6/6/11 in comb w/rev.
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Old Wed Apr 6, 2011, 05:02 PM
bebop bebop is offline
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hi. my Dad has been transfusion dependent for over a year now. no blood thinners. he gets 2 units of blood a week. or did. his treatments now have stopped.
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Old Wed Apr 6, 2011, 09:46 PM
riccd2001 riccd2001 is offline
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Blood thinners...

Quote:
Originally Posted by sophia68 View Post
... This is the first time he has been given a blood thinner and I was wondering if this is a normal recurrance for tx dependent MDS patients?
When I was hospitalized (in-patient) I was given Heparin injections regularly in concert with PRBC transfusions. However, as an out-patient Heparin not required.
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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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  #4  
Old Thu Apr 7, 2011, 01:29 PM
sophia68 sophia68 is offline
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Quote:
Originally Posted by bebop View Post
hi. my Dad has been transfusion dependent for over a year now. no blood thinners. he gets 2 units of blood a week. or did. his treatments now have stopped.
Hi bebop...thanks for responding. Hmm...not sure why the doctor ordered a BT for my dad...awaiting a call back from him. Sorry about your dad...be strong...hang in there.
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Dad (83) DX w/MDS-RARS on 6/10/06.Prev treated w/Vidaza & Thalomid w/o success. Treated w/Decitabine w/some imprv discont after no resp. TX dep as of Aug'10 (evry 2-3 wks). Curr tkg Revlimid since Feb'11. Exjade since Apr'11. Recd lwr dsg decitabine on 6/6/11 in comb w/rev.
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  #5  
Old Thu Apr 7, 2011, 01:32 PM
sophia68 sophia68 is offline
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Quote:
Originally Posted by riccd2001 View Post
When I was hospitalized (in-patient) I was given Heparin injections regularly in concert with PRBC transfusions. However, as an out-patient Heparin not required.
Not sure which BT my dad was given....wish this doctor would call back some time soon. Dad is always admitted for a day when he gets the tx.
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Dad (83) DX w/MDS-RARS on 6/10/06.Prev treated w/Vidaza & Thalomid w/o success. Treated w/Decitabine w/some imprv discont after no resp. TX dep as of Aug'10 (evry 2-3 wks). Curr tkg Revlimid since Feb'11. Exjade since Apr'11. Recd lwr dsg decitabine on 6/6/11 in comb w/rev.
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  #6  
Old Fri Apr 8, 2011, 03:53 AM
Birgitta-A Birgitta-A is offline
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Revlimid and blood thinner

Hi Sophia68,
As far as I understand Revlimid can cause thrombosis - blood cloths - and your dad's doctor is perhaps trying to prevent that. "Venous thromboembolic events (predominantly deep venous thrombosis and pulmonary embolism) have occurred in patients with MM treated with lenalidomide combination therapy and patients with MDS treated with lenalidomide monotherapy."
http://www.revlimid.com/hcp/hcp-home.aspx
Kind regards
Birgitta-A
72 yo, MDS Interm-1 dx 2006, tx dependent since dx, Thalidomide and Prednisone since June 2010 with good effect, Neupogen for low white blood cells and Exjade for iron overload.
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  #7  
Old Mon Apr 18, 2011, 11:49 AM
sophia68 sophia68 is offline
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Join Date: Jul 2008
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Quote:
Originally Posted by Birgitta-A View Post
Hi Sophia68,
As far as I understand Revlimid can cause thrombosis - blood cloths - and your dad's doctor is perhaps trying to prevent that. "Venous thromboembolic events (predominantly deep venous thrombosis and pulmonary embolism) have occurred in patients with MM treated with lenalidomide combination therapy and patients with MDS treated with lenalidomide monotherapy."
http://www.revlimid.com/hcp/hcp-home.aspx
Kind regards
Birgitta-A
72 yo, MDS Interm-1 dx 2006, tx dependent since dx, Thalidomide and Prednisone since June 2010 with good effect, Neupogen for low white blood cells and Exjade for iron overload.
Hi Birgitta,

Thanks for the information...dad just came back from the hematologist and his count is down to 6...needs to be transfused again...seems like the time span between tx's is decreasing and he needs blood more frequently. I'm worried about iron overload. He is taking exjade at the moment. He's normal complexion is brown (we're east indian)...now his face is really dark and also his toes and fingers are almost black...
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Dad (83) DX w/MDS-RARS on 6/10/06.Prev treated w/Vidaza & Thalomid w/o success. Treated w/Decitabine w/some imprv discont after no resp. TX dep as of Aug'10 (evry 2-3 wks). Curr tkg Revlimid since Feb'11. Exjade since Apr'11. Recd lwr dsg decitabine on 6/6/11 in comb w/rev.
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