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

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.

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?

Hi Lori. If I have already answered you please bear with me. lol. The hydroxy lowered my white cell
Count from 40 to 23 in a week. My hematologist told me to stay on it and see her next week. I am going on vacation with my son. He lives in Fort Mac. My doctor ok’d it for 2 weeks. When I come back I will start my treatment. She mentioned I have to do a blood test as well for CMML next week. Is that a regular blood test. Maybe she means a regular blood test.

Hi Jacklyn, You’ll be having lots of ‘regular’ blood work in the near future…just another delightful side benefit to having CMML. All part of the followup and process to make sure meds are working and numbers are in acceptable ranges.
Once things are in balance again, your life will level out. So for a little bit there may be extra appointments and adjustments…after that your life should resume to some normalcy.

Enjoy your vacation, @jacklyn! I think the distraction will be great for you. 😉 Happy 4th of July!

Happy 4th of July to you as well. I always feel better after I hear from you Lori. You are like a special angel sent from God. May God continue to bless you with good health and happiness.

Hi Lori. I just went to see my oncologist and the hydroxy has now brought my white cell count down from 50 to 14. The other counts are good. She seemed surprised. She said I can go away for 3 weeks now because she is not going to have to rush treatment right now. I am thrilled. I know things can change but to get the ok to go away and not have to
Start treatment as soon as I come back is a God sent. She is keeping me on 1000g if hydroxy. Is it possible that the hydroxy can keep me stable for awhile.

Jacklyn! That’s really super news that your wbc level has dropped so quickly with no other surprises for you! Happy dance for sure!
Well, now you can go on your vacation for 3 weeks and just enjoy yourself! I hope you have a marvelous time with your son. Sending you a hug🤗

Back at you Lori. Couldn’t wait to share my news with you.

Hi @dgordillo, it’s been a while since we chatted. I’ve been concerned about you because of the situation with your husband’s declining health. I’m hoping that maybe he relented and decided to see a doctor after all. How has he been feeling? And how are you coping?

My husband did decide to make an appointment with a pain management doctor to get help for the pain in his back. He does not have much faith that he will get any help. He does not have a favorable opinion of the medical field. He gets grumpier every week. He has no patience either. Most importantly he has not reconciled with the fact that he is going to continually get new symptoms and conditions. He is now three years with no treatment. He plans on living a long time and has ignored that his on oncologist said he would probably only have two years without treatment and that was a year and a half ago. He stresses about everything and is unable to find any peace. I am unable to offer him any consolation because he wont accept any help from me. He doesnt want to talk about his condition. And when Ive asked in the past he just said to stop diagnosing him. Im pretty much given up on trying to help him. Im very frustrated and have not much else to give.