Maine, Newbie w/MDS - Aquired Refractory Anemia

[MrsWard2002]

My name is Teresa Ward. At age 46, 2009, I was diagnosed with Mantle Cell Lymphoma, stage IV. I endured 5 rounds of Hyper CVAD with Rituxan from March 2009 - June 2009. In May of 2009 I had 2.8 million stem cells harvest at the Jimmy Fund Blding/Kraft Blding, Boston, MA; then they were frozen for future use. After the 5th round of chemo, my platelets would not recover. During chemo I had several blood & platelet transfusions. But transfusions did not help at that point. Between my Maine Oncologist & Boston Oncologist it was decided to go ahead with the Auto SCT. I had the transplant on Aug 11, 2009. It has not been easy to say the least. I have struggled since that time to get my numbers up. My white #s have been in the low "norm" range; hemo has run around 9 - 10's; my platelets got to 41,000 at one point. That was after using NPlate shots from March 2010 - October 2010. Once we stopped with NPlate, I started falling yet again. In January 2011 I started with Promacta 50mg, changing to 75mg in March 2011 and never got over 30,000. I used Neupogen shots for my whites for a long time after my transplant.

I have weekly, sometimes 2 or 3 times weekly bloodwork. Recently my hemo and my ANC started to fall. Most recent bloodwork showed 17,000 platelets, 1,000 ANC or 1.0 and my hemo fell to 7.8. This concerned my Oncologist here in Maine. It was decided that I should have a bone marrow biopsy. I have not had one since October 2009. At that time my bone marrow was at 30%.....from what I've been told, you take 100% subtract your age and that is what your bone marrow should be. So....I should've been 53%, so I was very low.

I received my results yesterday. I've been told that I have Myelodysplastic Syndrome - Aquired refractory anemia. I was told there are no signs of the Mantle Cell or any lymphoma at this time.

My Boston Oncologist had told me before my Auto "that it would take care of my numbers problem" and it didn't. In February of this year I had my 6th month visit with him. At that time he told me to start thinking about having an Allo. That I should have it before MCL returned. I thought, is he being a Debbie Downer? There's no rhyme or reason as to who comes out of remission and who doesn't. If he thought I needed an Allo, why didn't he do it in the first place? He gave me 6 months to think about it.....and come back in August with an answer. I already knew my answer when I left his office, NO. I consulted with my Maine Oncologist and she agreed. So........I now have to see him because of this new syndrome that I have. I know what he's going to say to me "You need an Allo".

In April of this year, we again were in Boston to see a Hematologist. His thoughts at that time were that I have blasted bone marrow. So.....not only are we going to see the Oncologist in July, we are also going to see the Hematologist again. When I got cancer, I had no idea of what to do, who to see, who to listen to, should I question what the Doctor was telling me or should I just do as he said? Different medical condition now, but I know enough now, that I want to consult more then one specialist.

I am a newbie to this discussion board. So if someone with some experience on MDS can please give me some guidance, I would truely appreciate your input. Is chemo worth trying? Did you have a full Allo or can a Mini Allo do the same for you? What are your suggestions, what did you do? Thank you in advance for any help you can provide.

Teresa/Maine age 48
DX 2/12/09 with MCL stage IV
5 rnds Hyper CVAD w/Rituxan
Auto SCT 8/11/09
Clean scans since July 2009

[Greg H]

Hi Teresa!

Sorry to hear about the rough road you've had -- and now you get a diagnosis of MDS!

There are plenty of helpful and experienced folks around here to visit with, so you've come to the right place.

If you haven't already found it, you should check out the AA&MDS website, especially all their great archived webinars and presentations on MDS.

I think the best basic booklet on MDS is the one put out by the Leukemia and Lymphoma Society (even though they need a more upbeat cover model), which you can download here.

Looking at treatment options, pretty much the first step is to know your IPSS score, which gets you grouped into one of four risk categories. Neil has a neat tool here that can help you calculate that -- or your doc may be able to help. Or forum members can help, if you want to post the info.

An allo transplant is generally thought of as the only "cure" for MDS. Several forum members have had allos for MDS or for AA and have posted detailed accounts of their experiences.

There are basically three FDA-Approved drugs for MDS: Vidaza and Dacogen, which work in pretty similar ways to reduce the effects of the disease for a time, and Revlimid, which is mostly used for folks with the deletion 5q chromosomal abnormality, but is sometimes used for other folks.

None of these drugs work forever, which may be why your doc is recommending transplant. There are a variety of clinical trials out there as well.

That's a quick rundown that may generate more questions than it answers, so fire away.

And welcome!

Greg