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Old Fri Apr 6, 2018, 03:23 PM
Barb Barb is offline
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Join Date: Jan 2018
Location: Columbus, Ohio
Posts: 28
MDS 2018,

Take a deep breath, and gather facts. Knowledge is power. And your wife needs you to be strong for her. I know it is hard, but you do have time, likely more than you realize.

So first a few facts that may help put you more at ease. From your signature it seems your wife may have 5q- syndrome. If one is going to have MDS, it is the best kind to have. It has a low likelihood of transforming to an acute leukemia. It can happen-I am living proof of that. But even for me, it took 12 years. For 12 years I was very stable with no problems. I did a little erothropoitin in the beginning, but most of the time I was on watch and wait. When I was first diagnosed with MDS 5q- sydrome, I was 46. My doctor told me she had another patient who was also in her 40's at diagnosis and who at the time was in her 70's and doing great. She was on Revlimid for a while which put her into remission. Generally speaking, with 5q- anemia is the biggest symptom. It does not warrant a transplant because it is considered low risk for transformation.

Secondly, Revlimid is a form of oral chemo. It will cause all 3 blood lines to drop. There is a protocol doctors follow. Most will drop the dose back, then raise it back up to get a patient into remission while minimizing side effects. There was a doctor at the Cleveland Clinic who would keep the same dose and treat the symptoms of dropping counts with transfusions, etc. So it is normal for her blood counts to drop in the beginning. They will come back up and stabelize. Revlimid is known to be highly effective in 5q-.

I remember how confusing it all was in the beginning, and scary. Then I actually got used to it. It really did not impact my life for years other than seeing the hematologist twice a year for labs.

This is a great place to ask questions and get support. I hope my answers are helpful. You do have time. And she is likely to never transform to an acute leukemia. Don't rush the process. Revlimid is a great drug.

Blessings,
Barb
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Barb. Diagnosed MDS 5q- in 2006. Stable until 2018. Dx high risk AML complex karyotype with TP53 mutation. On Dacogen, moving towards transplant.
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