secondary myelodysplastic syndrome

[krishna]

Hello All!

This post is on behalf of my cousin who lives in India: She had AA in 2014 when she was 14 years old. She recieved ATG therapy and subsequently was on cyclosporin for a year and was completely cured. 9 years later she got pancytopenia where her red blood cells, platelets, WBC all dropped. Her repeat bone marrow examination shows myelodysplastic syndrome. For the past 7 months (I think since december 2013) she has been on cyclosporin and there seems to be no improvement. And also currently she has no donor for BMT. Her parents are devastated.

I was wondering if there is anybody else in a similar situation and recieved any treatment that worked?

My heart goes out to all of you who are in this boat.. Here is wishing Good Luck to all you of in your journey wherever you are.

Thanks in advance for any replies.
Deepa

[sbk007]

http://forums.marrowforums.org/showthread.php?t=1943

[Neil Cuadra]

Deepa,

You should establish whether your cousin's MDS is classified as low-risk, intermediate-risk, or high-risk. The recommended treatment approaches differ depending on this measure of risk. Long-term dependence on transfusions is not a good approach for someone so young, but can be used to maintain her blood counts in the short term. There are drugs for MDS, typically used for higher-risk patients. The choices depend in part on which drugs are available in India. We know that ATG is available, so you might want to look for articles about ATG treatment for MDS, for example this article.

Share as much information as you can with your cousin and her parents, and ask them to share what they learn from the doctors, or on their own. They'll appreciate your help, especially if you take the time to do some research and reading too.

Good luck.

[krishna]

Hi SBK007! thank you for the thread. It was very informative and also gut wrenching.

Neil, thank you for your reply. My cousin got ATG treatment when she got AA the first time 9 years ago. The doctor (treating her) seems to think that second time around ATG might not be very effective. Right now she is on transfusions for platelets and packed RBCs. The parents based on some research article are planning to talk to the doctor about rabbit ATG since the last time she got horse ATG. But in general my cousin loathes ATG because of the horrible side effects she got last time.

So far this time around she got fever 4-5 times and has been hospitalized in the intensive care each time. She also gets Hidradenitis - kind of painful sores in her private parts. In general she is in low spirits. has gone in to some kind of seclusion for months. She doesn't talk to or see anybody. Thanks again!

[sbk007]

Day 79 post transplant...my last posting for awhile

By Alyse Booth — Jun 1, 2014 9:44am

Dr tamari said I was doing well enough to go to our house in the Berkshires for a long weekend. We are up in the Berkshires now. It is so great to be out of the city, I am looking at our beautiful emerald green pond and the magnificent trees. it is sunny and everything sparkles.
My biggest issue remains eating. As you know I've lost a lot of weight.. about 20 lbs. I'm trying to stabilize and not lose any more. Am on a med that is supposed to increase my appetite. So far I am living on smoothies made with high calorie ice cream, muenster cheese and canned peaches in heavy syrup.
As i get closer to the 100 day mark I am hoping my appetite will come back and my hair will start growing in, Despite walking a lot I still am very fatiqued. I hope that also improves soon.


Doctor says i am doing very well and only have to go to the out patient clinic once a week to see her.So grateful i have had no major problems that put me back in the hospital.
We are taking a break from Caring Bridge for awhile.
Feel free to email me in the interim.
Thanks for your continued support.
Alyse

Rt

[krishna]

THank you rt for posting that. I wondered what happened to Alyse after that... I am so glad she is doing OK.

[Whizbang]

Steve,

I can relate to Alyse's post, I'm still down about 20 lbs. (a good thing in my case, I'm now 178 lbs.), and although I eat, and enjoy some foods, I'm not eating like I was before transplant... Again a good thing I think... Last two weeks I've been trying to put back on 5 lbs. that slowly came off over the past few months, I attribute the weight loss to being more active, and the beautiful weather... I'm even playing softball for my churches co-ed fun league (I'm pitching - modified arc)...

At 79 days, I wasn't really growing a beard, or hair yet either...

I'm still also making daily shakes, although I use a banana, vanilla ice cream, and chocolate milk... It's a good way to take in some calories and protein...

Good luck to everyone, and may God Bless!!!
David