First Promacta results in MDS patients

[Birgitta-A]

Hi all,
Here are the first results from a trial of Promacta in MDS patients. The patients got a significant increase in the number of megakaryocytic colonies. Platelets is fabricated from megakaryocytes. They don't really tell us much about the trial for example the number of patients and controls or anything about adverse effects.
http://www.ncbi.nlm.nih.gov/pubmed/20688394
Kind regards
Birgitta-A

[tytd]

Thanks Birgitta, that is encouraging news. Apparently NIH has not started clinical trials of Promacta in low risk patients, only in AA and high risk MDS. At least it gives us low platelet patients some continued hope. Tytd

[Birgitta-A]

Hi tytd,
It is really quite surprising that the study with lower risk MDS patients isn't recruiting for the moment - not a good sign. At the 2010 ASCO conference they probably showed preliminary results but in the abstract they only gave info we could read at clin trials gov.
http://clinicaltrials.gov/ct2/show/N...ndromes&rank=2
Kind regards
Birgitta-A

[mcgill54]

Hi Brigitta,Tytd and everyone, just saw my dr yesterday and she said that there were several studies ongoing with nplate alone and in combination with other meds. The Promacta is somehat behind and in my case i would not be eligible as CMML is an exclusion. As we all know MDS is a very varied and unpredictable thing. She did clarify the policy NYP has re platelet transfusions at 20K..that is for people over 80 yrs old. Yesterdays count was up 3, now 40 and I have a 4wk break, which is most welcome. All other counts are as she says "rock solid". Hope you both (and all members) continue to do well. Your support has been very helpful. All the best, McGill54

[Birgitta-A]

Hi McGill,
Yes, Promacta has always been behind Nplate and they started trials with MDS patients much earlier with Nplate. These studies showed increased blast cells in about 20% of the patients - most patients recovered when they didn't continue with Nplate. That is why FDA has a very serious warning about Nplate for MDS patients. FDA has a warning about Promacta for MDS patients too but we really don't know much about the effect in MDS patients.

Remember that 2 members of this forum have transformed to AML after taking Promacta - one within 1 month and the other after several months.

Next week, when I do blood work at the hospital, I will go to their library and get the article written by Mavroudi et al from Greece in Leuk Res. Then I will tell you more about the study.
Kind regards
Birgitta-A
Thalidomide 50 mg 5 caps/week since June 2010. Last platelet count 55.

[Birgitta-A]

Now I have read the article "Effect of the nonpeptide thrombopoietin receptor agonist eltrombopag on megakaryopoiesis of patients with lower risk myelodysplastic syndrome."

The reseachers have not studied the effect of Promacta on MDS patients - only on bone marrow cells from low risk MDS patients - the same kind of study that has been carried out on high risk patients.

Promacta may stimulate all stages of megakaryopoiesis (fabrication of megacaryocytes which make platelets) in cell lines. They did not observe any significant change in the proliferation rate of patient blast cells that might clinically imply an increase risk for AML transformation.
Kind regards
Birgitta-A

[mcgill54]

Hi Brigitta, I checked the latest on promacta also, and it seems like there is a long way to go. Hope you continue to feel well. Best Wishes McGill54

[Birgitta-A]

Hi McGill,
I am fine with a platelet count of 55 and transfusions every third week when I have been taking Thalidomide 10 weeks - I hope the response will continue.

Have you started with Nplate?
Kind regards
Birgitta-A

[mcgill54]

Hi Brigitta, glad you are doing so well. I have not started the Nplate, no treatment needed until platelets go to 20. Even then I am not sure about trying it, although the alternative of platelet transfusions which are recommended for people over 80 , seems just as questionable. Last week after stopping the aspirin my count was 40, so i am just hoping they don't fall too quickly. Next check Sept 9, unless there is a problem! I just discovered the Nordic MDS group site..very interesting. I am looking for more information about CMML, which seems to be fairly limited. Best Wishes,McGill54

[Birgitta-A]

Hi McGill,
Yes, I have learnt a lot from Nordic MDS group's treatment program. My doctor is writing his dissertation about Vidaza treatment in MDS patients and professor Eva Hellström Lindberg is his superviser. I have been to a lecture she was giving at a MDS forum arranged by MDS Foundation April 2009 in Stockholm - the whole day was very interesting.

Platelet transfusion is perhaps a good solution - the problen is that they often fail to increase plateles after some time.
Kind regards
Birgitta-A