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DiscussionI've had CML for 20 years and want to encourage others
Blood Cancers & Disorders | Last Active: 1 day ago | Replies (102)Comment receiving replies
Replies to "Is hydroxeria hard to take. I am 76 yrs old and have been diagnosed with CML...."
Hi Jacklyn, I was also diagnosed in November 2023 at age 76 with what turned out to be Ph+CML after some alarming routine blood tests showed platelets at 2000 (normal range tops out at 450). The hematologist oncologist put me on Hydroxyurea 500 mg twice a day which steadily lowered the platelet count to acceptable levels. I had some side effects such as thinning hair, fatigue, mild nausea at times, but overall tolerated the drug quite well.
I had a bone marrow biopsy to confirm the diagnosis. I didn’t have any sedation and honestly, it was no big deal. I’ve had root canals that were worse. In January of this year I stopped the Hydroxyurea and began taking Tasigna in a clinical trial which has some side effects, too, but not too bad.
Just follow your oncologist’s advice and you’ll be okay. CML is very treatable with medication. Best of luck to you.
Welcome to Connect @jacklyn. It looks like you were recently diagnosed with a slowly developing, chronic form of leukemia called CML. The good news is that this type of leukemia generally responds well to treatment so you can continue to enjoy life!
As for tolerating the hydroxy, I’d encourage you to try it. Because to do nothing would be to allow the disease to proliferate out of control. With CML, there are more targeted medications to take to treat the disease specifically. So your hematologist oncologist may be starting you out on Hydroxy to lower the white blood count and then make a switch. I found a good article for you from the Leukemia & Lymphoma Society that explains the medications for CML.
https://www.lls.org/leukemia/chronic-myeloid-leukemia/treatment/lowering-high-white-blood-cell-counts
There are many members in our forum who are also taking Hydroxy because it’s a pretty common drug used to treat different blood conditions. I’ll post the link below for you to check out. Hopefully the conversations with experienced members will help ease your fears about the drug.
The first discussion is about taking Hydroxy.
~What are most common side effects when starting HU (Hydroxyurea)?
https://connect.mayoclinic.org/discussion/hu-side-effects/
Were you having symptoms that led to your diagnosis? How was your CML diagnosed?