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Clinical Trials Considering or participating in research studies

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  #1  
Old Wed Sep 14, 2011, 11:52 AM
cheri cheri is offline
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Revlimid and Procrit Combination Trial

A Phase III Study of Lenalidomide Alone and in Combination with Epoetin Alfa in Patients with Myelodysplastic Syndromes and Symptomatic Anemia

Saw this trial at Sloan Kettering, NY and wondered if anyone on here has participated in Phase I or II and what their experience was.

Also, does anyone know anything about this Dr Virginia Klimek?

I may have reached a point where I need some outside options....
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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Old Wed Sep 14, 2011, 12:33 PM
Birgitta-A Birgitta-A is offline
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Revlimid and Procrit

Hi Cheri,
I found this study at clin trials gov.
http://clinicaltrials.gov/ct2/show/N...in+Alfa&rank=1 Is it the same study?

It look interesting but I don't like that they don't inform about the Revlimid dose. Is it 5 or 10 mg/day? Then I think that Revlimid should be combined with Dexamethasone or a similar drug - all patients with the diseases Myelofibrosis and Myeloma now get that combination because Revlimid and Dexamethasone increases HGB in different ways.

I feel that MDS patients not always get the best treatment. This study was designed 2009 and at that time they perhaps didn't know how important Dexamethasone is for best response rate.
Kind regards
Birgitta-A
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Old Thu Sep 15, 2011, 08:56 AM
cheri cheri is offline
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Thanks Birgitta, for the link.....

My Dr is confused where to go......let's just say it's pretty much my call at this point. He's open to virtually anything. And I could hunt around for the world expert in MDS and the treatment options still remain the same.. BMT, Vidaza, Dagocen, Revlimid...I'm not interested or able to chase around with a lot of clinical trials.

I am currently still running a fever and until this clears up, I am just doing the transfusions and Neupogen. I am now also on Valkade because we think there is something viral going on....and Bactrim as well for prevention of bacterial infections. My #'s are way to low to tolerate any big hits!

I did Vidaza for 7 cycles with no appreciable results, other than I am still here!
Moving forward, my options are Dacogen (which I need to research) and maybe Revlimid, if DR can get it approved. I wonder if the combo w/Procrit willl help...(we are testing my epo levels this week, to see if it will even work.) But I really love your suggestion about adding the dexamethasone....
The only thing I don't know is what the dosages should be for Revlimid, Dexa and Aranesp/Procrit........to be effective. I am not 5q- so there may be a battle with insurance. I may suggest the thalidomide if all else fails.
That could be an interesting cocktail...I'm willing to try my own clinical trial!
And what the heck---nobody seems to be able to pinpoint the actual treatment that works for the majority.

My only question is if I should try the Dacogen first...?
Feedback welcome, ya'll!
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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Old Thu Sep 15, 2011, 11:58 AM
Debbie W Debbie W is offline
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Hi Cheri,

The link from Birgitta shows this is a big study and the study chair is Dr. List at Moffitt, sorry I cannot comment on the trial and know there are others here who are better able to do so.

Dr. Klimek was my husband's doctor through two treatments of Dacogen and then induction and she was very helpful. Seeking another opinion at Sloan or another large center sounds like it would be a good idea.

Debbie


Quote:
Originally Posted by cheri View Post
Thanks Birgitta, for the link.....

My Dr is confused where to go......let's just say it's pretty much my call at this point. He's open to virtually anything. And I could hunt around for the world expert in MDS and the treatment options still remain the same.. BMT, Vidaza, Dagocen, Revlimid...I'm not interested or able to chase around with a lot of clinical trials.

I am currently still running a fever and until this clears up, I am just doing the transfusions and Neupogen. I am now also on Valkade because we think there is something viral going on....and Bactrim as well for prevention of bacterial infections. My #'s are way to low to tolerate any big hits!

I did Vidaza for 7 cycles with no appreciable results, other than I am still here!
Moving forward, my options are Dacogen (which I need to research) and maybe Revlimid, if DR can get it approved. I wonder if the combo w/Procrit willl help...(we are testing my epo levels this week, to see if it will even work.) But I really love your suggestion about adding the dexamethasone....
The only thing I don't know is what the dosages should be for Revlimid, Dexa and Aranesp/Procrit........to be effective. I am not 5q- so there may be a battle with insurance. I may suggest the thalidomide if all else fails.
That could be an interesting cocktail...I'm willing to try my own clinical trial!
And what the heck---nobody seems to be able to pinpoint the actual treatment that works for the majority.

My only question is if I should try the Dacogen first...?
Feedback welcome, ya'll!
__________________
Debbie, wife of Mike age 58, diagnosed RAEB 2 April 2010. Initial blast count somewhere between 10-15% then 20% after two treatments of Dacogen. Completed induction therapy 8/2/2010. BMB 8/31/10 - 4% blasts. SCT 10/1/2010. Relapsed in 10/2014, second transplant from same donor on 12/31/2014.
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