Promacta and MDS

[DianeD]

Promacta started on 4/1/10 to increase platelets. Change from MDS to leukemia the next month, May/10. White cell count raised slightly on 5/6 blood test to 10.4 - highest in 18 months or more. It has increased each week until, on 6/15/10, it is 50.4. Hg which had fluctuated in range of 11 - 13 for the previous 7 months is steadily decreasing each week- on 6/15 down to 10.1. Platelet transfusion need continues to be weekly. We were very hesitant to try Promacta and read all we could on internet before starting - including posts on marrow forum. I am posting this so others will have this information to take into consideration if they are offered Promacta as an option. If we had the decision to make over again, we would not try Promacta.

[rose mcmillin]

I hate this disease, it just keeps you guessing all the time. So sorry for your experience with promacta. My husband way considering it. I appreciate your honesty and wish things would turn around for you. Take care, Rose

[Birgitta-A]

Hi DianeD,
How terrible with transformation to AML in connection with Promacta treatment! Then we all know that Promacta probably is just as dangerous for us as the other platlet stimulating drug Nplate that caused increased blast cells in 8 of 44 MDS patients. In most patients the blast cells decreased when Nplate was stopped.

As far as I know only one other member, Kirby Stone, has received Promacta (since June 2009) and he has had good results.

There are 2 trials going on with Promacta (Eltrombopag) in MDS patients. At the ASCO Conference June 2010 they had an abstract about the preliminary result from the study with patients with advanced MDS - in fact they had AML because the blast cells in the bone marrow should be more than 20%.

The abstract did not tell us anything about the results because it was written many months before the conference. At the conference they showed an updated poster but that is not published anywhere so we have to wait until they publish the results somewhere else. http://abstract.asco.org/AbstView_74_53792.html

Hopefully your WBCs will decrease when you don't receive Promacta!
Kind regards
Birgitta-A

[bebop]

at what point with wbc do they consider it aml? I can't seem to find that anywhere.

[mausmish]

I don't know about WBC relative to aml. My doctors said greater than or equal to 20% blasts in bone marrow is considered aml.

[Neil Cuadra]

The difference between MDS and AML is in the count of blast cells (myeloblasts, the immature blood cells), which is determined with a bone marrow biopsy and aspiration. If the count is less than 20% blasts, the disease is considered MDS. More than 20% is considered AML.

[bebop]

ok thanks. sorry didn't mean to hijack the thread. was curious since my dads white counts have been slowly creeping up in the last month or so.

[knstone]

Hi Diane and all,

I started Promacta 6/3/09 and have continued to use it at 75mg/day. I have MDS that transformed to leukemia, blasts 36% 10/2009. I'm on Thalidomide since 6/22/09, Dacogen low dose since 10/09. Blasts reduced to 14% on 2/10. I've continued on the 3 drug regimen and my counts are fairly stable.

The transformation to AML was probably due to the MDS, not the Promacta. I've continued on the 3 drug regimen and my counts are fairly stable. Promacta seemed to increase my platelets somewhat, not sure how much but prior to starting my platelets were as low as 9-12 and today they are in the 20-low 40's.

It is difficult to say what is really working in my case, I'm just glad something seems to be holding the counts. I'll have another BMB in July, hopefully the blasts are not higher.

[Birgitta-A]

Hi Kirby,
Good that you are still going strong ! Still I am afraid of Promacta and think it is better with platelet transfusions if the platelets are very low just to be on the safe side.
Kind regards
Birgitta-A