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NEWLY DIAGNOSED

This topic has 4 replies, 1 voice, and was last updated 16 years, 4 months ago by jaxem.

Viewing 5 posts - 1 through 5 (of 5 total)

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May 26, 2008 at 1:22 am #20752

lucyc
Member

Hi. I was just diagnosed with MDS from my Hematologist/Oncologist. I am a breast cancer survivor and completed one year of chemo last December. My WBC, Hgb and platelets have been consistently low (but not enough to warrant any treatment). Doc finally suggested bone marrow biopsy which showed mostly normal except for dysmegakaryocytopoiesis (which I have read to be abnormal cells or MDS). The Oncologist said I have MDS and we will do watchful waiting. She did not explain anything and I left her office thinking I was totally fine until I went online and saw was MDS was. HELP! Lucy PS. I am 60yrs old.

May 26, 2008 at 2:55 am #20753

Frankie
Member

Hi Lucy….
I’m 66. I’ve had breast cancer twice and also have MDS. In fact I had my second bout with cancer during the time I was being treated for MDS by way of transfusions.
I’ve had pneumonia twice and was hospitalized both times. It’s amazing what the body can endure.
It’s sometimes hard to figure out if my fatigue is due to the MDS or just being an old fart. haha

Best wishes,
Frankie

May 26, 2008 at 10:01 am #20754

eve
Member

hi lucy

where are you being treated

good luck
eve

May 26, 2008 at 1:34 pm #20755

Russ P.
Member

Lucy,
Your Onc’s advise to do watchful waiting is best. Reading some of these posts can be depressing but remember every case is different and yours must be mild and may not get worse. You might consider saving some of your good stem cells in case you could use them down the road.
Good luck,
Russ

May 30, 2008 at 2:36 pm #20756

jaxem
Member

lucy
i commented on another of your posts about your disease. this cell defect is usually found in RAEB. Is this the type MDS you have been diagnosed? Have they stated if there are blasts involved? watchful waiting is dangerous unless you’ve checked it out thoroughly getting a 2nd and possibly 3rd opinion. there are so many good institutions in your area (Sloan, N. Shore, etc.). the earlier you get to resolve this thing, the better!
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