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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)Comment receiving replies
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?
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Thank you so much for all the information. I feel better already. I was diagnosed with low risk MDS 8 yrs ago. A wait and see. Low platelets were my problem. I was put in steroids for pneumonia and my platelets came back to normal. I had a total hip replacement last year which went very well but ended up with fractures in my thoracic spine which led to a diagnosis of osteopenia. Taking injections for that. I have had problems with shortness of breath and sweating at night for a few years. Then my white cell count suddenly rose to 43. My hematologist did 2 bone marrow biopsies because the first one the biopsy wasn’t enough
She thinks snd came back negative. The second one she eas pleased with and sent the biopsy to the Jewish General hospital and The Glen. Two top hospitals in Montreal. Two weeks later she called me with my diagnosis. It was over the phone and I took in what I could. She said the hematology board of doctors would be meeting Thursday to discuss my case. She wanted to start me on hydroxy but it is a long weekend here so I guess I will start Tuesday. She also
Talked about Chemo treatments but not like the chemo I took 17 yrs ago for Breast cancer. It is an injection under the skin for 7 days I think. I will know more this week. Also the fatigue I have off and on. It just comes on usually at the end of the day. I lay down for about 15 min and then I get up and I am ok again. Have to take breaks when doing housework. lol.