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I am looking for advice on lab work and how to address my Dr about it
Blood Cancers & Disorders | Last Active: Jun 16, 2025 | Replies (13)Comment receiving replies
After being diagnosed with ALL, then T-Cell large granular LL. I wondered by my platelets went up. I then had a bone marrow test and was diagnosed with Essential Thrombocythemia by another lab. Platelets before test always hovered around 435 to 465. Two years ago I was tested for JAK2 and all other mutations and tests were negative. White blood cell count changes from high and average. I have not seen the tests results for the bone marrow biopsy. But was immediately placed on Hydroxyurea and baby aspirin. Doctor did not explain why other than giving the new diagnoses. His nurse came in and handed me my prescription. I had to ask her to write down the new diagnoses for me. She came back with a print out. Is this standard operating procedure. I feel like I've bee left out in the cold.
Replies to "After being diagnosed with ALL, then T-Cell large granular LL. I wondered by my platelets went..."
Hi @marygantt,
I totally relate to feeling confused by doctor’s recommendations! I was diagnosed with ET 1/2025 and then my O/H changed that to primary myelofibrosis 2/2025. I do have high platelets and CALR1, no chromosome mutations. First she told me not to take baby aspirin, just high dose Hydrea which I have never taken and then she changed that to ok to take baby aspirin. I asked for bone marrow biopsy and I have unusual megakarocytes. My risk analysis came back very low and low for primary myelofibrosis. Then she referred me to bone marrow transplant specialist so I will keep my appointment for early August there. I recently had pelvis CT scan she ordered which showed normal spleen and everything else including no clots anywhere. The only unusual finding was mild liver enlargement. I feel totally fine and just finished climbing to the top of the Vernal Falls Waterfall in Yosemite a few days ago while on family trip with friends. I will continue to take low dose aspirin daily and living me normal busy life as usual like I always have.
Stay positive and advocate for yourself!
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Welcome to Connect @marygantt Oh gosh, there’s nothing like feeling left out in the cold by your doctor! When you get a new diagnosis you’d like to know as much as you can about what it entails, what can be done for treatments and how this will impact your life!
Quite frankly, I’d urge you to get a 2nd opinion. You’d like confirmation of your diagnoses and you’d also like to feel that your doctor and their team have your back.
You have a right to know the results of the bone marrow biopsy and why you’ve been given a medication to treat ET (having too many platelets) but not addressing the ALL or T-cell large granular LL. These are both forms of leukemia.
Were you undergoing treatment for ALL or T-cell large granular LL?
Do you have access to a larger teaching hospital or another hematologist oncologist?