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Old Fri Mar 17, 2017, 12:07 PM
BrianA BrianA is offline
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Join Date: Mar 2017
Location: Woodbridge, VA
Posts: 7
Hello My New Friends!

Greetings! I'm new to the forum and as of December 2016, I am also a relatively newly diagnosed MDS patient.

I've spent a lot of time researching and trying to better understand my disease. My browser seems to automatically goes to sites like aamds.org, mds-foundation.org and others. I do try to keep a healthy balance, however, between learning and overreacting to the information I read.

To quickly give you my background, I've been struggling with moderately low blood counts since my PCP ordered a routine CBC in 2013. At that time, I as referred to a hematologist, but the BMB was inconclusive. Watch and Wait suddenly became my course of (in)action until December of last year.
My "numbers" from my first abnormal CBC w/Diff in 2013 only showed WBC of 2.0 X10*3/uL and PLT of 94 X 10*3/uL.

Since 2013, I visited my hematologists 4 times per year and tracked my continuously decreasing numbers

Fast forward to November of 2016. My hematologist noticed I had become severely neutropenic and wrote me a prescription for a steroid to improve my neutropenia. At this point, I'm still not diagnosed. Rather than take the steroids, I chose to visit Moffitt Cancer Center in Tampa for a second opinion and hopefully a diagnosis. Fortunately, I was able to quickly score an appointment and visited them on November 30.

The results: After another BMB and a series of blood testing including flow cytometry, I was diagnosed with MDS, subtype RAEB-I (blasts >5%, good karyotype). By now, most of my CBC values have fallen outside the normal range. WBC was .74, PLT was 58, ANC 240, RBC 3.51 X10*6/uL, HGB 12.3 g/dL. MCV, MCH, MPV, HCT are also out of the normal range.

My doctor at Moffitt decided to admit me into the hospital and begin a course of treatment normally used for Aplastic Anemia patients - Equine Atgam followed by 6 months of cyclosporine. The Atgam treatment wasn't fun and I had the fever and chills many patients experience while undergoing this biotherapy. But, almost as quickly as it started it was over and I was allowed to walk out of the hospital and resume my life. The goal was to suppress my immune system and give my body a chance to reset my marrow and start making healthy blood cells again.

Lets fast forward again 2 1/2 months post treatment (today). My numbers aren't much better and my doctor has termed them "stably bad". We are still watching and waiting although he admitted today that it doesn't appear the Atgam treatment is working. I will return to MOffitt and see him in early May and he'll do another BMB. At the same time, my sister is being sent her HLA Typing kit in preparation for the eventuality of a SCT. The results of the BMB in May may hopefully determine if/when that SCT will be approved and scheduled.

So, I'm trying to return to "normal" but it is admittedly difficult. I exercise regularly but not like I once did before my Atgam treatment. Now, I'm doing more active stretching and weight training whereas before I was training to run half marathons and participate in triathlons. Unfortunately, I am not able to run anymore as I can't catch my breath. I'm not constantly fatigued, but have some difficultly with getting enough O2 to my body during exercise. So, I just take it slower than before...

I'm try to keep busy with work and hobbies to occupy my mind, but I find myself thinking again and again about the uncertainty of the future. As many of you know, it isn't easy to cope but I've found journaling and sharing with others helps me to better come to grips with the disease and its impact on me.

Anyway, this was probably far to long of a introduction but I'm glad to have found this forum and look forward to interacting with you as I beat back my MDS!

CBC as of 3/16: WBC .41, PLT 60, ANC 160, RBC 3.11, HGB 11.2. All other parameters are slightly out of normal range except RDW and MCHC.
__________________
Brian
Diagnosed Hypoplastic MDS RAEB-I w/5% Blasts (Nov 2016); treated with Atgam in Dec 2016 and completed cyclosprine course in May 2017; Blast 3-5%; Hypocellar BM; WBC .66k/uL; ANC 0.15k/uL; Platelets 71k/uL; RBC 3.54mil/uL; Hemoglobin 12.7g/dL
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