I would like to know what symptoms you are experiencing and what, if any, treatment you are undergoing.
I’ve had CML for 11 years now and have been treated with 3 different medications. Gleevec, Sprycel and now Tsigna. The first 2 did pretty good for about 4 years each. So far so good with Tsigna. Side effects with all 3, some worse than others. I ended up in the hospital with internal bleeding on year 4 with the Sprycel. 9 units of blood later and 17 days in the hospital they stopped all therapy for 2 months and then started Therapy again using Tsigna. It’s been an interesting 11 years. Lots of time with Doctors and Labs. With the Tsigna they like you to get EKG’s every couple of months. For now I’m only getting labs done every month. I haven’t had a bone marrow biopsy for quit some time. They’ve come up with a smear test that gives them similar results and is much more less invasive. Good Luck 😉 take advantage of what each day gives you. You’ll find some days are better than others, well at least for me that’s been the case. I’ve learned to live with what they call the “New Normal” great right! Well it seems that over my last 11 years I find that everyone that is in this club that we didn’t sign up for (CML) reacts differently to the different treatments. My hope for you is you do well, I’m sure you will. They’ve come a long way since I was diagnosed 11 years ago. Have a good day 😃
I have cmml. No treatment yet. Numbers have been climbing every month. I am now on my match waiting for a stem cell donor. I am having lots of fatigue and itching (extremely annoying all over itching. Where are you at in the process?
I was diagnosed with CMML In August of 2019. I was being treated with chemo and pills and then used an anonymous donor for my stem cell transplant in April of 2020. I am doing well although life after transplant is different from life before transplant. There are many restrictions on food you can eat and I was advised to stay out of the sun and no hot showers. But all in all I am cancer free after my last bone biopsy two months ago. I haven’t been able to leave the house except to go to my oncology appointments with the City of Hope. When Covid is gone, I can venture out. Feel free to contact me if you want to discuss anything I have gone through relating to the CMML diagnosis. Stay strong!
I have CMML. For a year, I have been taking hydrea.
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