Father with RCMD
 

Hello everyone,

since my beloved father was diagnosed with MDS- RCMD in october 2014 and since i accidentally found this forum on web, i have been reading you guys a lot!

This forum has provided a lot of useful information and advice along with stories that give hope to me and my family. At this point i would like to say, that people on this forum are really inspiring and i wish all the best to all of you fighting this disease.

My father has a very low platelet count: 30 k at dx and 24 k at this time, his other counts are not so bad, although they have declined a bit since october. But still they are all low.

The no. of blasts is unknow to me, while his hematologist failed to send the BMB report to us, but i guess they are below 5%, otherwise he would be classified as RAEB? Is that correct?

My father is taking promacta 75 mg per day since december 2014, they started him on promacta when his platelet count was 16 k. Since then they are stable at 24 k but still extremly low.

I would like to hear about your experiences with promacta, how long did it take to see improvement, maybe it is not working for my father? I saw some posts from members that had a very positive response, but i would like to hear as much of personal info as i can.

My father is 76 and has a coronary artery disease and is taking blood thiners. Maybe is that the reason that promacta is not having a bigger effect?
Also he is a very special person, full of lust for life and new ideas, i really wish to have him around for a long time.
Please feel free to comment and share your thoughts on this post. I would be really grateful for your response.

Thank you very much,

Polona

P.S. Sorry on my grammar and spelling, english is not my first language, i come from Slovenia :)

Hi PolyG,
I am so sorry to hear about your Father. I know how you feel. My husband was diagnosed the same as your Dad -
MDS- RCMD. I believe you are correct that under 5% blasts he would not be considered RAEB.
My husband had great!! success with Promacta. He was the first MDS patient in a clinical trial for Promacta at The National Institutes of Health in Bethesda, Md.
My memory of all the facts has faded a bit but I believe they started him on 50mg., slowing increasing until he reached 150mg. It took about 6 months for him to start having a real response. After over 125 blood/platelet transfusions and being on his oncologist's "death list", he has been transfusion independent for going on 4 years now.
I went into great detail of his journey on the forums if you would like to read them. At your Father's dosage and the short time he has been taking Promacta, in my opinion, I don't believe he has been on it long enough to be discouraged.
Please feel free to e-mail me at shcalvert3@aol.com or we can converse on the forums that may help inform others.
The NIH has had amazing success with Promacta - starting with their AA patients and now with their MDS patients as well. It truly preformed a miracle for my husband as neither Campath nor Cyclosporine had helped.
Best wishes to you and your Father!
God Bless,
Sally

promacta
 

Hello Sally,

thank you very much for your response. It is very encouraging that your husband had such a great success with promacta!
But in our country, the max. dose is 75 mg for promacta.. Did your husband had any adverse reactions from promacta while he was taking 150 mg?
Is he still taking it?
May i ask how is he doing now? How are his other blod counts?
My father is currently in Vienna getting a second opinion for his mds, i hope that the results wont be worse than they were..

Thank you very much!

Polona

Hi Polona,
Don really didn't seem to have any adverse reactions to Promacta. He took it for about a year - until his platelets went over 100,000. At that point they weaned him off and he has remained off of any MDS meds.
Since then his platelets have stayed around 100,000 - his reds are just a little below normal as are his whites. Promacta brought up both platelets and reds.
We are currently on the last leg of a 3,300 mile trip. We will have been in 9 hotels at the end of our trip - carrying luggage in and out of every hotel. Four years after starting Promacta - and being off of it for 3, it's as if there is nothing wrong with him. I don't know if everyone has had the same success in the trials but his has been nothing short of a miracle.
Next month, we are going to NIH for his 6 month check-up and a bone marrow biopsy. But we don't expect any surprises.
I hope your Father gets good news from Vienna.
Please keep us posted and feel free to ask any further questions.
Best wishes,
Sally

promacta
 

Hello Sally,

how very wonderful news is that! I hope you and your husband have fun and enjoy your trip, and i wish that he will remain in good shape for a loooong time :)
I will post what my fathers results will be this time, I hope that promacta will eventually kick in like it did with your husband :)!

I too wish you all the best and i hope you will have a great time on the rest of your trip. Thank you for your information!

Bye bye

Polona