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Jak 2 and Waldenstrom's Macroglobulinemia
Blood Cancers & Disorders | Last Active: Mar 10, 2021 | Replies (23)Comment receiving replies
Additional symptoms I'm experiencing include: swollen lymph nodes on sides of neck and sore throat over the last 5 weeks, muscle spasms and severe pain in neck and back of head × 2 days, some vomiting, esophogus/upper stomach -increased pain over the last 9 months, tired much of the time, dizziness and light headedness
How do multiple, rare, incurable cancers impact the quality and length of life compared to having just one blood cancer? I haven't yet found anything in the literature on this.
I'm seeing my new doc for the first time since i was tested and diagnosed with waldromstrom's in june 2019. Ive had ET and Jak2 since 2016.
Question: should most people with my situation and symptoms be on treatment and should Ihave a treatment/ care plan even if the hematologist/oncologist doesn't prescribe medication, other than aspirin?
Question: Is acquiring multiple blood cancers common? I want to understand and be informed.
Thank you.
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As far as I know, ET with a positive JAK2 mutation normally suggests you have a high platelet count. I have MDS and MPN. On the MPN side I have ET and MF. Since there is no cure for MPN diseases or MDS diseases absent a stem cell transplant your oncologist or hematologist will treat your symptoms. I had a very high platelet count so I'm on hydroxyurea which is the standard treatment to reduce one's platelet count. I was diagnosed after a bone marrow aspiration, biopsy and a molecular panel. The molecular panel indicates multiple gene mutations and that was the conclusive scientific evidence the Leukemua doctors at Sloan needed to make a definitive diagnosis and a treatment plan. Sloan said there is a 30% chance of mutation to full blown Leukemia at which time they'll discuss a stem cell transplant. The good news is there is 70% chance of no mutation to Leukemia, so just live your best life. Good luck.