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Old Tue Oct 16, 2012, 02:21 PM
Bambam Bambam is offline
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Join Date: Oct 2012
Location: Vancouver, BC, Canada
Posts: 59
Quote:
Originally Posted by Neil Cuadra View Post
Most of us went through the same period of shock and realized that only by learning what was happening to us could we help do anything about it. Like you, my wife was diagnosed with MDS/RA. We were frightened at how serious a disease MDS can be, and only slightly relieved that MDS/RA is at the less-risky end of the MDS scale. Gather all the information you can, including from the Aplastic Anemia & Myelodysplasia Association of Canada, and ask all the questions you want.
Thank you for this. Those are my feelings exactly.


Quote:
There's a certain amount of time needed to process and analyze the biopsy, so waiting a week or 2 isn't unusual, but the long delays you've been told about sound more like procedural delays. It sounds like your hematologist isn't part of a major treatment center and has to contract out the lab work, or maybe she can get it done only on a monthly cycle. Even then, I can't imagine what could take 3 months. If your hematologist is associated with a treatment center, you might try asking an administrator there about it instead of asking the doctor, or ask to be put in touch with the lab directly. It's awful for them to leave you hanging in the balance for so long, especially if your other lab results indicate that you should begin treatment soon.
My Hematologist is an Assistant Clinical Professor and Clinical Hematologist at Vancouver General Hospital, a large and reputable teaching facility associated with University of BC. Upon your advice, I have today called and asked to know what is the reason for the delay and also whether I can be referred to the MDS Clinic at VGH. I hope I don't offend my Hematologist but it seems there is a well respected Specialist, Dr Tom Neville, in the same unit.
I think my lab results are bad and I have some other troubling symptoms - itchy scalp with pimples in the hair, thinning hair, mild headaches at the top/back of my head, fatigue. However, when I see the lab results of others here, perhaps mine suggest low priority. I have also lost a lot of weight and despite now eating normally, am staying at the low weight - oh if I could have lost that weight before MDSRA!
The Hematologist thinks something else may be going on besides the MDS as she doesn't link those symptoms to the syndrome. I hope not.
Thank you again for your thoughts - it helps to know one is not alone with the scary thoughts that come to mind now and then.
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DX MDS RA Low Risk August 2012. DX Changed to MDS RAEB1. Progressed to AML July 2013. Participated in clinical chemo trial CPX351 and relapsed four months later in March 2014. Maintenance chemo -VIDAZA (AZA) stopped after 4 rounds. Awaiting full report from BMB.
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