I've had CML for 20 years and want to encourage others

Posted by suzie71 @suzie71, Feb 17, 2019

I have had CML for 20 years. Would love to encourage anyone struggling with it or new to it.

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Hi @suzie71

If you are still here, I would love to connect. I was diagnosed during June 2022.

REPLY
@lisalucier

Hi, @suzie71 - thanks for sharing that you've had Chronic Myelogenous Leukemia (CML) for 20 years and are available for anyone who is new to it or struggling with it. I'm sure other patients could use your support.

In case you've not seen it in your journey with this illness, here is Mayo Clinic's information on CML https://www.mayoclinic.org/diseases-conditions/chronic-myelogenous-leukemia/symptoms-causes/syc-20352417.

Wondering if you could share a briefly about what symptoms you were having prior to your diagnosis and what treatment you've gone through over the years?

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HI: I had no symptoms. That is why its so important to do regular blood tests. I had a elevated WBC, and I worked for the Oncologist who found my Leukemia. He did not waste time to do a bone marrow biopsy on me. I started with Heavy Duty Interferon shots daily, and then Ara-C shots on alternating weeks. It became too much and was effecting my liver. I had to stop treatment. Just then I saw a Clinical Trial going on in NY at NY Presbyterian Hospital. I went to NY, and was accepted into the trial for at that time was STI-571. After approval it became Gleevec. I took Gleevec for 18 years, until I filled up with fluid that was giving me heart problems. I went off my Gleevec in Feb. of 2018, and to this day I am still not on any TKI drug. I am being monitored so that if my Leukemia should start to surface again that I will be put on a new TKI drug. I have been undetected since July of 2001. I have so many other health issues to deal with, therefore, I Thank God Everyday for what he does to keep me going

REPLY

Hi, @suzie71 - thanks for sharing that you've had Chronic Myelogenous Leukemia (CML) for 20 years and are available for anyone who is new to it or struggling with it. I'm sure other patients could use your support.

In case you've not seen it in your journey with this illness, here is Mayo Clinic's information on CML https://www.mayoclinic.org/diseases-conditions/chronic-myelogenous-leukemia/symptoms-causes/syc-20352417.

Wondering if you could share a briefly about what symptoms you were having prior to your diagnosis and what treatment you've gone through over the years?

REPLY
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