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I've had CML for 20 years and want to encourage others

Blood Cancers & Disorders | Last Active: Oct 22 10:55am | Replies (100)
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@cherbarn

I just got results of blood tests today that are indicating myelodysplastic syndrome. I received 2 units of blood almost a month ago for severely low hemoglobin. 6.6 My platelets are elevated, My B12 is greater than 2000. My erythropoietin level is 35.6. I have had severe shortness of breath, with minimal physical effort, extreme fatigue and dizziness at times, since last summer. I broke 2 ribs last summer so thought these symptoms were associated with broken ribs. I think my Dr believed I was exaggerating my symptoms since my O2 sat was always normal while sitting in his office. He never ordered any blood tests at all. Fast forward to this summer, I had back surgery with preoperative blood work that showed numerous abnormal values and Severely low HgB. Now the Dr listens to me. Of course, all blood work is returning abnormal and I will be seeing hematology oncology for further testing and bone marrow biopsy to determine more specifics. My hope is that this has not already progressed to AML.

Just seeing your words lifted my spirits tonight. I had decided not to worry until all questions have been answered. Then I saw your post. No worry necessary. Thank you.

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Replies to "I just got results of blood tests today that are indicating myelodysplastic syndrome. I received 2..."
Lori, Volunteer Mentor | @loribmt | Jun 27 9:02am

Hi @cherbarn. I’m sure this is shock for you coming on the heels of your back surgery. Hopefully you’re recovering well from that procedure.
Amazing how we finally get our doctor’s attention when we have wonky bloodwork! I had the same misadventures with my primary care doctor 5 years ago.

No matter, you now have their attention! So, going forward, it will be important for you to follow up with the hematologist soon to get a firm diagnosis. This shouldn’t be delayed, especially with your history of extreme fatigue and low hemoglobin requiring transfusions. I’ve been through that myself and it is alarming the level of fatigue when we don’t have enough red blood cells circulating.

As you mentioned the hematologist oncologist will likely order more blood work, along with a bone marrow biopsy and aspiration. That test is important because it goes right to the heart of the blood manufacturing site in the body. The results will be used to determine your diagnosis and type. Blood abnormalities may suggest MDS, but the doctor can’t make an exact diagnosis without examining a sample of bone marrow cells.

I know this all feels pretty surreal right now and a little scary. Whatever lies ahead, you just found a new family here in Connect. There are several of us who have had MDS or AML and we’re here to help answer your questions and offer support, encouragement and hope!
My suggestion would be to avoid searching online for information right now. Until you get a diagnosis, speculating is really a waste of time and an anxiety booster!
When is your hematology appointment? I’d love to talk with you again so will you please let me know what your doctor says?

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