Hi everyone,
I am pleased to report that, as of this Thurs., 7/5, my husband will come off Promacta. Once his platelets went over 100,000 they started a slow taper from 150mg., dropping the dosage 25mg. every 2 weeks until his last dosage, which was 25mg. - trying to get those stubborn platelets below 100,000.;)
His platelets today were 121,000. Also during the time he was on Promacta - which he started 3/11 - his reds reached the normal range for the first time since 11/08. You can read his history in this clinical trial at the start of my other thread under "Clinical Trials" named "New Promacta (Eltrombopag) clinical trial at NIH" as well as a little history in this thread. He virtually had no side effects that we know of - he tolerated the Promacta very well.
They will do CBC's every 2 weeks to monitor the situation and we go to NIH on 7/17 for a scheduled BMB but we don't expect any surprises.
He was the first MDS guinea pig for Promacta at NIH and I think he will be Promacta's star MDS patient.
If anyone has any questions regarding this treatment or NIH please feel free to contact me.
God Bless,
Sally

Hey Sally!

That's really great news. When they do the Promacta paper at ASH, they should put Don's picture on the cover page.

What a great success story!

Take Care!

Greg

Wow, Sally, that is such great news. I know y'all are thrilled. I can remember when we were thankful for platelets of 40,000, so it's kind of scary now with them hovering around 16,000. But we're more concerned with the blasts now as they seem to be going up rapidly. Since we weren't able to get into Moffitt before next week, Al is going to have to have another BMB before they will start him on anything else, I'm afraid, since his last BMB done on June 5th at NIH is only good for 30 days. We did everything in our power to try and get him in sooner, but to no avail.
I am just glad that Don has been helped and NIH worked out so well for y'all. God bless you both. And I continue to thank you for your help and support.

promacta
 

Hello Sally, Greg, Linda,
So glad to hear that Don is still responding to Promacta and with few side effects, that is great. Greg, glad to see you are back (we've missed your informative posts lately) and hope you are doing well on the Danazol. Linda, Moffitt is a very good center and hope they will find a trial for Al. Maybe they can use the BMB from NIH. I am sorry he did not qualify for the Promacta trial but wondered why NIH did not provide you with any other options??
Today, there is a study from NIH published in the New England Journal of Medicine about a phase 2 study of Promacta in refractory AA patients. I have not read the whole article but the abstract says that 44% of patients responded , some even with responses in red cells and WBCs as well as platelets. Hopefully this will prove useful in MDS patients as well without causing increased blasts but only time will tell. I cannot provide a link to this article but if anyone wants to read a copy of it just send me an email and I can forward it to you.

Greg,
I think that's a great idea about the picture.;) And thank you for you kind words. It is good to see you posting again. You are always so informative and humorous at the same time.
Linda,
Thank you for your kind words as well. You always manage to provide support in spite of what you and Al are going through. I wish you both well at Moffitt. Please keep us posted and let me know if there is anything I can do - even if just a shoulder to lean on.
Tytd,
Thank you for your support as well. I would appreciate getting a copy of the clinical trial for AA/Promacta. shcalvert3@aol.com.
God Bless all!
Sally

Awesome news, Sally. Congratulations to both of you on getting to this milestone!

I also wanted to let you know how much I appreciate your updates about clinical trials/findings, etc.

Thank you so much Catherine! I wish you and Bruce the best.
God Bless,
Sally

Promacta trials
 

Hi Sally. I am glad to hear that your husband is doing well. Whom do we contact about the trial evaluating Promacta for use in treating MDS? My father is 83 with advanced MDS and is not a candidate for Vidaza. We are looking for alternatives. Can you advise me?

Please send me the article/info on Promacta
 

Hi,
My father is 83 with advanced MDS and is not a candidate for Vidaza. We are looking for alternatives like Promacta. Can you please send me a copy of the study. My email address is: Joslind@bellsouth.net
Thanks, Debbie

Hi Debbie,
I sent the link to you in an e-mail but want to post the link on the forums in case someone else wants to read it.
If anyone has any questions about Promacta please feel free to contact me - shcalvert3@aol.com.
God Bless,
Sally

Eltrombopag and Improved Hematopoiesis in Refractory Aplastic Anemia
http://www.nejm.org/doi/full/10.1056/NEJMoa1200931

Contact information at NIH:
Barbara Weinstein RN BSN CCRP
NHLBI/ Research Nurse Specialist
Building 10 CRC Room 5130
10 Center Drive
Bethesda, MD 20892
phone: 301-594-4180
fax: 301-594-1290

Hello my friends,
I just wanted to update you on Don's progress since stopping Promacta on July 5. He stopped after a slow taper didn't bring his platelets below 100,000 (what a
problem:)) out of concern for clots.
Two weeks (7/17) after stopping Promacta his platelets dropped from 121,000 to 88,000; HGB dropped from 12.6 to12.4; WBC dropped from 6.8 to 3.61; neutrophils dropped from 6.0 to 2.49.
On his 7/27 CBC his platelets were still a respectable 83,000; his HGB was 12.9; his WBC was 6.2; and neutrophils were 5.1. He will stay off Promacta as long as his platelets stay above 50,000.
He started Promacta in May of 2011 but didn't see much movement until the fall. While on Promacta his reds reached the normal range for the first time since 11/08. He received Campath in 4/09 and Cyclosporine in 2010 but remained very transfusion dependent until Promacta - especially for platelets.
We also received a short note regarding his bone marrow biopsy - 'the cells seen are essentially unchanged and most importantly there is no increase in blasts, signifying no progression'.
I hope this gives hope to all who may be discouraged. There was a time that Don was on our doctor's "death list". We were told this once she took him off. There was a time when his neutrophils reached 0.0.
There are so many treatments out there for MDS and they are coming up with new ones all the time. Everyone's MDS is different and responses vary. Just keep the faith that the right one is out there and you'll eventually find one that will work for you.
If anyone would like to contact me regarding Promacta please feel free to do so - shcalvert3@aol.com.
God Bless,
Sally

Promacta
 

Hi Sally,
Don's story is a wonderful reading for all of us :)!

I had a mail from Kirby Stone. Nplate is better for him than Promacta - it is really true that "everyone's MDS is different and responses vary".
Kind regards
Birgitta-A

Hi Birgitta,
Thank you so much for your kind words and support. My greatest wish with telling Don's story is that people will read it and see that, even though things can seem so dire and futile, where there is life there is always hope. Don's story certainly is a testament to that!
I hope you are doing well. So glad you are posting again - I missed your wisdom and kindness.
God Bless,
Sally

Sally,

I think the other great thing about your sharing Don's story is that it may encourage folks to have a positive attitude about participating in clinical trials.

With a rare disease like MDS, where there are relatively few options that have been FDA approved, a clinical trial can sometimes be the only want to get the drug or treatment that fits your particular type of MDS.

It doesn't always work, of course but it has certainly worked for you all -- and, by participating in a trial, you've helped countless MDS patients who come behind you.

Take care!

Greg

Promacta
 

Hi Sally,
You know I have been staying at my summerhouse (without pc) and only visited Stockholm once a week without time to post. I still feel fine after a little more than 2 years on Thalidomide + Prednisone though my HGB and platelets are now very slowly decreasing. The WBCs are holding.

Here is an abstract about Promacta and how that drug can inhibit the proliferation of leukemia cells:
http://bloodjournal.hematologylibrar...2/386.abstract
Kind regards
Birgitta-A

Hi Sally,
I sent you a private message. Looking forward to hearing from you.:)

I just checked and there wasn't a private message there. Please e-mail me at shcalvert3@aol.com

Hi Sally,

Thank you for sharing your husband's experience in taking Promacta. Very encouraging. I have just sent you a private message and hope to hear from you.

Best wishes


Leung

Hi Leung,
I have answered your private message. Please let me know if I can be of further help.
Blessings,
Sally

Eltrombopag
 

Hi Sally

I read your husband’s story.
Very encouraging for someone like me
I m 35 years old,a mother of 5 years old daughter
I was diagnosed with severe aplastic anemia on
30 September 2017. My treatment was started fast
I got atg,immuno supression n Eltrombopag (150) by dec 2017
I was platelets transfusions free by February 2018
N blood transfusions free by August 2018
As of 25 December 2018 my counts r hb 10.8
Tlc 2800 n platelets 78000
My doctor are going to start tapering medicine by 9 jan
Initially doing 150/125 on alternate days n then after 2 weeks 125
Then montly decrease it by 25
I was wondering wat are your husbands count now?
N wat to except while tapering

Hi Dishavirk,
It is wonderful that Promacta has helped you - and so quickly.
I went back and read some of the posts I made along with others who posted since I started this thread in 2011. So much I don't remember!!! I can give you a brief update but you can get a more accurate account by the posts I made during that time - which you may already have done.
He finished his Promacta taper in July, 2012 and has been in remission ever since - no transfusions since 2011 after over 125 blood/platelet transfusions. With his last blood draw (12/18) his counts did start slipping - platelets were 74,000. We are hoping that the slippage is due to some fairly serious health issues in Oct., 2018 - unrelated to his MDS. He will be checked again on Jan. 8.
I don't recall his having any reaction to taking Promacta or tapering from it.
As I stated in my previous posts, they waited to taper him until his platelets reached 100,000. Should they drop to 50,000, he would start Promacta again with our local oncologist. While it's not approved for MDS outside a clinical trial, he does have some overlapping AA that would allow him to be given the Promacta.
Please let me know if I can give you any further information and please keep us posted.
All the best,
Sally

Hi sally thanks for replying 😊
Did your husband work especially during the timw his wbc was low ?

Wishing u n your husband good health
Hope he recovers dis time too!!

Hi sally thanks for replying 😊
Did your husband work especially during the timw his wbc was low ?

Wishing u n your husband good health
Hope he recovers dis time too!!

Don had retired by the time all this happened. He was 66 at the time. But he was absolutely able to function while taking Promacta. I remember we drove from Virginia to Texas which took us 4 days so 4 hotels to take luggage in and out of - and driving about 1300 miles one way. He had no side effects whatsoever.
Thank you for the well wishes. Please keep us posted.
All the best,
Sally