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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)
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@jacklyn

I went to see my oncologist with my son. Not the best news. She said I have CMML with 6 mutations that they don’t like and has something to do with AML. She is going to start me on a drug called ascidene (?) and a pill. She said the pill can mess up your other counts so they keep a close watch. She said the problem is if and how long the treatment works for.
She was up front and said statistically it ‘s 2 years.
However it depends some CMML patients do well on the treatment. Are there any people on this site who has CMML and had good results.

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Replies to "I went to see my oncologist with my son. Not the best news. She said I..."
Lori, Volunteer Mentor | @loribmt | Jul 3 9:19am

Good morning, Jacklyn. I think the medication you’re referring to is Azacitidine (Vidaza). There are two forms of the drug so I don’t know if you’ll be on the oral pill or an injection.
Azacitidine oral is used to treat acute myeloid leukemia in people who are in remission but cannot finish other treatments for this condition and Azacitidine injection is used to treat certain types of bone marrow cancers and blood cell disorders.
Vidaza is often combined with venetoclax…that may be the pill you’re referring and taken along with Vidaza injections. Either way it is a combination with a proven track record to help treat AML, MDS, CMML Certain forms of MDS and CMML can progress to AML so the meds used for AML can be used to treat the latter two conditions.

There are several discussions in the forum with other members who have been on this combination of meds so I’ve posted a couple links to get you started:

~How long can we be on Vidaza (with @dchavian @miketllc3 @njjwjj @camacho and many others who are using Vidaza and venetoclax for their blood cancers)
https://connect.mayoclinic.org/discussion/how-long-can-we-be-on-vidaza/
~Acute Myeloid Leukemia (AML) - Treatment of 75 year old is working! (Posted by @ccleschats)
https://connect.mayoclinic.org/discussion/acute-myeloid-leukemia-aml-treatment-of-75-year-old-is-working/
I hope other members such as @beewoman70 @cblowers1 and @joesim might be able to share their experiences with you about having CMML and possible treatments.

This is so much change happening for you at one time and I know it’s unsettling. Believe me, I’ve been there. But I’ve also found that it’s important to not focus on statistics or time frames…thoughts like that waste precious time and only serve to stress us out. So my best advice is to find new meaning in every day and enjoy life to the fullest. 😉
When does your new treatment plan go into effect? Will you be able to stop the Hydroxy?

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