new member

[wpeche]

hello - I was diagnosed in jan 2011 with MDS - told its a refractory case - Ive been on oral prednisone, cytoxan, rituxan, IVIG, neupagen, numerous blood transfusions and am scheduled for evaluation at md anderson. I've had 3 bone marrow biopsies which show mds and has not changed much over the past yr. I am interested in hearing about other therapies.

[triumphe64]

The AAMDS sponsored walk in San Antonio, March 24 will have an educational event on the morning of Mar 25.

http://www.aamds.org/community-event...ure-5k-runwalk

[Neil Cuadra]

Hi Bill.

It's good to hear that your MDS has at least been stable, although I'm sure you'd like to see more improvement. I hope you have been able to manage any side effects from the drugs you are taking.

Which other therapies you and your doctors might consider depends on a number of factors, including these: How often have you needed transfusions? What is the blast (immature white blood cell) count in your blood and in your bone marrow? Do you have the 5q- syndrome as found in the results of your bone marrow biopsies? Is your MDS considered low-risk, intermediate-1 or intermediate-2 risk, or high-risk? Are you generally healthy other than the MDS? And what age group are you in?

If you consider a transplant or mini-transplant to be one of your choices, the availability of a donor typically depends on how many siblings you have, your ethniticy, and (unfortunately) just plain luck.

[Greg H]

Hey Bill!

Welcome aboard! Given that you've had cytoxan, I'm kind of surprised you haven't had Vidaza or Dacogen.

As Neil suggests the kind of therapy that might make sense depends a lot on whether you have low or high risk disease, your age and health status otherwise, whether you have excess blasts, and whether you have chromosomal abnormalities.

Are all three of your counts low?

Take care!

Greg

[mausmish]

Hi Bill,

Welcome!

I agree with Greg. It's good that you're going to MD Anderson. Best of luck to you, and please let us know what you find out.

Karen

[wpeche]

Hi All

thanks for your replies. MD anderson did a very thorough work up - and my chromosomal studies were not too bad. They are bewildered by the hemolysis more than anything else. So my new protocol is Prednisone oral 50 per day X 1 wk, then tapering down 10 mg per week. They debated about Vidaza but decided on weekly rituxan X 4 weeks then a break, then 4 more weekly rituxan infusions, and possible splenectomy in another month or so. I really hate the high dose oral pred, I now have very high blood sugars and a good deal of insomnia - but my Hgb is now stable at 10.4 (for three weeks and I don't miss the transfusions) and WBC are 7,000 up from 400.

I return to MD anderson on April 13.

This is quite a journey - grateful to find the forum and all of your expertise and support. I am trying to make it to the brunch this Sunday -

thanks again, Bill

[Snuuze]

When I read hemolysis, I immediately think of PNH. Probably because I have that on top of AA/MDS. Has your doc tested for PNH?

Sue

[wpeche]

Hi Sue - It was mentioned and explored once - I believe its been ruled out but that was a hemotologist filling in ..... I will ask again, thanks for your reply