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Old Mon Nov 18, 2013, 10:05 PM
alyse alyse is offline
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Join Date: Jul 2010
Location: new york new york
Posts: 12
From Aplastic Anemia remission to MDS/AML; on a Vidaza Trial

Hi everyone,

As soon as I think I am done with this disease, it kicks me in the butt again, only worse. In Nov. 2008, shortly after going through ATG at NY Presbyterian Hospital for Severe Aplastic Anemia, my counts came back up and I didn't need any transfusions. Fourteen months later I thought I was cured. My doctor was pleased with my response and took me off Cyclosporine. Within a month, my platelets went from 140,000 to 12,000. After my relapse, I went to NIH to participate in the Campath Trial. Five months later my blood counts rebounded and I stopped needing transfusions. On Sept 17, 2013, I went to NIH for my three year evaluation feeling confident that I had finally beaten this disease. Dr. Young and the other doctors were impressed with how good and stable my blood counts were (plats, 90,000, wbc, 2.1 and Hgb 12.8). They told me not to worry about the bone marrow biopsy results. So I left confident that I was home free. I was living the life I had before the disease, getting labs once every three months and taking only Valtrex. A week later I got a call from a Fellow working with Dr. Young who said that the doctor wanted to speak to me. I knew immediately it was bad news. The BMB had come back showing 18% blasts; the diagnosis was MDS, borderline AML. After speaking with Dr. Young, Dr. Gail Roboz who had treated me with ATG when I was first diagnosed with AA in 2008, called me and mentioned a clinical trial with a drug called Vidaza plus Pracinostat. She also suggested I go for a cure..a bone marrow transplant.

Last week with my blood counts still stable, I started the clinical trial at New York Presbyterian Hospital. It is Vidaza (7 days by injection) plus Pracinostat (2 pills 3x's a week for 3 weeks). The goal is to get into remission so I can have a bone marrow transplant at Memorial Sloan Kettering Cancer Center. I am already on the registry there. I assumed I was much too old (I am 69) for a transplant but doctors at both institutions say age is not a deciding factor anymore. I am healthy in every way except for MDS/AML.

Today was day 6 of Vidaza. I have experienced nausea, fatigue and bad headaches from Zofran, some pain and itching at the site of injections, but was able to have a pleasant weekend off from the drug. Today I had labs and my whites had dropped to 1.2 (neuts are 600); Hgb 11.8 and platelets dropped to 30,000. Dr. Roboz said this is natural and I may need a platelet transfusion. She is putting me on anti-biotics and anti-fungal drugs.

Somehow the drop in blood counts is a reality check for what I am now up against. With Aplastic Anemia, the goal was to get blood counts up. I understood that. But this is different. This is about blasts and it is overwhelming. This has shaken me so much that I really can't absorb it. Has my life changed so dramatically that it will never be the same? Will I ever be able to plan a trip as we were planning to go to South Africa for my 70th birthday? Will I be spending a minimum of two days every month at the hospital and 7 days each month when I get Vidaza or some other more intensive chemo if Vidaza doesn't do the trick? What is my true life expectancy? Is a bone marrow transplant the best option despite all the horror stories I read about? I also hear stories of miracles; I have spoken to bone marrow transplant survivors who are doing well and thriving (In fact, the woman who lives across the hall from me in Manhattan and is my age, had one a year ago and is doing well). But I realize that some still have serious health issues that may never go away.

I have gotten many emails from friends and family saying that I am amazing and courageous. At first, these emails strenthened my resolve. Now I am not so sure. The truth is I am depressed and scared. I thought I had what it took to fight this disease but now I lack the confidence I had a few weeks ago.

Any words of wisdom and hope; any examples of living well with this disease, any comments at all would be greatly appreciated. My thoughts and prayers are with all of you who have or have a loved one with this disease.

Thank you.
Alyse
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Alyse, dx AA Oct 2008, ATG+CSA; relapse May 2010; Campath trial Aug 2010; good counts 2011- Sept. 2013; then re-dx MDS borderline AML,
Nov. 2013, Vidaza+Pracinostat trial; Jan 2014, considering chemo/transplant.
Please donate blood and platelets.
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