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MDS Myelodysplastic syndromes

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  #1  
Old Mon Jul 25, 2011, 03:37 PM
marmab marmab is offline
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Post newly diagnosed hypoplastic MDS

Hi,

I'm excited to find this forum and get information from others. I've also joined an MDS forum. I'm finding both very helpful!

I'm newly diagnosed with (the hematologist thinks) hypoplastic MDS. I'm an otherwise healthy 57 yr. old woman whose only symptoms so far are shortness of breath from anemia and easy bruising from low platelets. All my cell counts (red, white & platelets) are low and slowly declining, but my differentials and blood chemistry are all normal. Inflammatory/autoimmune markers (ESR, CRP, ANA, etc.), for what it's worth, have been very high for some time. My BMB showed no blasts and no cytogenic/chromosomal abnormalities, but only 10% of cell producing marrow (if I have the term correct) instead of the 40% that it should be, thus the hypoplastic part of the DX.

I'm wondering, though, because of the absence of blasts and cytogenic/chromosomal abnormalities, if this is something more like AA, or another autoimmune-type condition that is doing a number on my marrow. I have decided to get a second opinion at Dana Farber in Boston, near where I live (I'm currently seeing an MD at Beth Israel Deaconess). It will probably be a month or two before I can schedule that. My current MD has me on watch and wait, although he also said that he would like to get everything going for bone marrow transplant, so...I'm a bit confused.

One more thing, that may or may not have anything to do with my Dx. I developed a lung condition called BOOP (bronchiolitis obliterans with organizing pneumonia) three years ago, out of the blue. It is thought to be an autoimmune/inflammatory type disease, usually treated with corticosteroids (prednisone). I have taken prednisone a few times in the past when I've had a flare up, but I've been stable for 1 1/2 years now, with normal lung function, but still persistent mucous and "squeaking" in my lungs with every breath. Until the recent anemia from the presumed MDS, I did many aerobic sports -- running, biking, swimming, x-country skiing, mountain climbing, etc. I'm just wondering if the BOOP and MDS are related?

Sorry to go on so long. I just have so many questions and am trying to figure this all out. Thanks so much for any input!
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  #2  
Old Mon Jul 25, 2011, 05:13 PM
Hopeful Hopeful is offline
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Hi marmab,

What are your current counts?

I would recommend consulting with an AA specialist sooner rather than later, as you may be a candidate for IST therapy now (ATG/CsA or CsA alone) to reverse the trend.
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #3  
Old Mon Jul 25, 2011, 07:06 PM
Neil Cuadra Neil Cuadra is offline
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marmab,

Which MDS forum did you join? Others may find it useful too.

Have you needed any blood or platelet transfusions?

Watch-and-wait is a reasonable initial strategy but if your counts continue to drop you may need treatment. And that requires a correct diagnosis, so you're asking the right question about hypoplastic MDS vs. aplastic anemia. Ask your hematologist why he/she thinks it's MDS so you can compare with the opinion you get at Dana Farber.

To me it seems premature to be talking about a transplant without first confirming the diagnosis, getting a subtype classification and scoring if it's MDS, and weighing the tradeoffs of drug treatments as well. You are lucky to be otherwise healthy so you have all of these options. And maybe your counts will recover and you won't need treatment at all.

"Hopeful" mentioned immunosupressive therapy (IST). That's common for aplastic anemia, and IST can be effective for hypocellular MDS as well (more so than for MDS with normal cellularity). That's why it may be a possibility for you. If you do indeed have MDS, there are chemo drugs, but they are more often given for higher risk MDS than for lower risk MDS. Transplants can cure either disease but involve their own risks. Treatment decisions are very individual so the more information you and your doctors have, the better.

The cell percentage is called cellularity and you are correct that you are hypocellular. 10% is lower than the 40-50% that's normal for your age and they generally call it hypocellular when it's under 20% to 30% for your age.

BOOP and MDS are both rare and the combination is even rarer. They also have something else in common: most cases have unknown causes. That means that their causes could be related. MDS is considered a possible cause of BOOP, and so are radiation and drugs like cyclophosphamide that are used as treatments for MDS.

We're patients and caregivers so we don't understand everything to the degree that the doctors do, but when we keep asking questions and sharing what we know it gives us the best chance to help each other.
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Old Mon Jul 25, 2011, 07:19 PM
Ryan Jay Ryan Jay is offline
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Dr. at Dana Farber

One Boston-area bone marrow failure patient to another...

I would recommend Dr. Joseph Antin at Dana Farber.

He's great! Really smooth style too.
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Ryan Jay: 38-yo, dx SAA: 7/25/10, ATG: 8/10/10. CR with counts still rising. HGB: 13, Plt: 137 WBC 5.1 ANC
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  #5  
Old Tue Jul 26, 2011, 08:07 AM
marmab marmab is offline
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good information

As I have had only two appointments with my MD, one for the BMB, and one for the Dx, I am finding this forum extremely helpful. Thanks so much for the replies to my queries, and for all the information. In response to Hopeful, my counts are currently WBC 3.3, RBC 2.46, Hgb 9.3, Hct 27.2 MCV 111, MCH 37.0 and Plt 44. Because I have three cytopenias, my IPSS score is Intermediate 1. Thanks for the information on IST -- I will talk to the MD about it. And thank you to Neil and Ryan Jay for your responses too. The other forum I found is the one at the Myelodysplastic Foundation, www.mds-foundation.org. I have been following a blog (that I found at the mds forum, andy-mds-recovery-journal.blogspot.com[/color]) by Andy Robert, who also highly recommended Dr. Antin at Dana Farber. Andy is currently in the hospital in Boston, having just received his transplant.

I have ordered copies of my records, so I will have more information about the BMB pathology, etc. when I receive them. It's not that the doctor was hiding anything from me; I think that he was just presenting the findings in a basic manner because he didn't want to overwhelm me with technical information about the Dx at my first appointment. He did say that most patients have many more questions at the second appointment after Dx.

Thanks so much again.

mac
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