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What are most common side effects when starting HU (Hydroxyurea)?
Blood Cancers & Disorders | Last Active: May 28 5:20pm | Replies (165)Comment receiving replies
After my JAK2 was found my O/H ordered a bone marrow biopsy which could be done right at the cancer center. An experienced and sympathetic person tried three times but was unsuccessful in getting a specimen. Although the area was numbed, each try was very painful, but I wanted them to keep trying so we’d have a definite diagnosis. I had a fourth biopsy in the hospital where I was sedated and they could use special equipment; that effort was successful and we knew what we were dealing with.
While the pain of the first three tries was extreme, it was short-lived with no adverse results. I’m glad we followed through and could better understand my condition (myelofibrosis). I’ve been on hydrea for almost a year (500mg daily) and continue to live an active and fulfilled life, enjoying my volunteer work, travel, and family. I’m 83.
Try to go ahead with this biopsy so your doctor can know for sure what direction to take. A few minutes of pain is worth the knowledge gained.
Please let me know how it goes for you - I’ll be rooting for you to be strong. You’ve done harder things, I’m sure, and you can do this.
Replies to "After my JAK2 was found my O/H ordered a bone marrow biopsy which could be done..."
Hey dunewalker,
I did the bone marrow biopsy last week at Mayo and went over results with Dr. yesterday. There were 2 mutations, JAK2 6% and ASXL1 8.6% . He said that the low values under 10% were not concerning. My diagnosis is still Essential Thrombocythemia. Now we know what I don't have so far !
The bone marrow biopsy was no big deal. I experienced this type of feeling when had a temporary sciatica episode in 1999 and this procedure gave me a 2 on 10 scale sciatica feeling. I made sure to notice it as a feeling rather than pain. It was a fluttering nerve disturbance and was fleeting.
04/03/25 Platelets were 540. Begin 500mg Hydroxyurea every other day.
04/22 platelets 440. After only 10 pills, the 100 point reduction was a surprise.
Of the 2 doctors I have seen for this I have decided to make the 40 minute drive to Mayo rather than staying with the doctor close to home. I am also 40 minutes drive to MD Anderson another stellar choice . The Mayo campus is tranquil and beautiful which enriches the experience of going there by way of the coastal highway A1A whereas MD Anderson is next to a busy freeway in an urban setting, so being there is part of the treatment experience that I considered , especially since my husband and dogs appreciate the enjoyable waiting period in the shade or in an outdoor cafe.
Since patients come to Mayo from all over the world for treatment, I am very lucky to be able to make that choice . The patient experience is very important to Mayo and they make every accommodation beginning with patient drop off areas and valet parking to hotels and restaurants on the their campus. All medical and lab services are readily available including virtual follow up doctor visits if anyone is curious about how to manage long distance treatment at Mayo Jacksonville.
Thanks for rooting for me.
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Thanks for the words of encouragement. I will carry on and keep your good wishes in mind while I go into Zen mode during the procedure. The best case for me will be a hospital visit with sedation. I will keep you posted.