Does anyone have chronic myeloid leukemia (CML)?

I was diagnosed in December 2020. Initially I had regular blood tests and when white cell count continued to rise had a bone marrow test done. I've been on Sprycel since January 2021. Until white cell count came down to normal level had blood test twice a week. Now in the 'boring stage' as my doctor calls it and only have test about every four months. The magic number I need to reach is 0.0000 in the blood test and I'm not there yet. Once I reach that I will be on medication for two years with the hope of then being taken off Sprycel. As far as dealing with the physical and emotional aspect, I get sick much easier. Any time I'm around sick grandkids I catch their cold or flu much quicker than before. I've lost several immediate family members in the last couple of years which has been extremely difficult but I don't know if not having CML would've made any difference. Losing both sisters at age 67 and I'm 61 made me do some serious soul searching. I hope this helps and if there's anything I can answer, I'll try. I'm far from an expert on the technical side of this disease though.

Hi @ilahi, I'd like to add my welcome along with @pam62. I'm also tagging fellow CML-ers like @billybee @suzie71 @annareenu @ericloomis @bobmon @quita123 to join the discussion and share their treatment experiences with you.

You may also be interested in joining this support group:
- Adolescent & Young Adult (AYA) Cancer Support Group https://connect.mayoclinic.org/group/adolescent-young-adult-aya-cancer/

Rameez, cancer indeed takes its toll both physically and emotionally. Would you mind sharing what challenges you're finding hardest today?

I do not have any issues anymore. I was diagnosed in 1998 with CML and after 18 years of taking Gleevec I had to stop due to bad edema throughout my body and eyes. I was undetectable since 2002, but stayed on my Gleevec. I am now almost 6 years of Treatment Free Remission this coming Feb. I just get monitored every 6 months to be sure I am still PCRU. The Invention of these TKI drugs has saved many a life. Anyone can e-mail me at anytime if they need some support of any kind.

Don’t despair, Rameez! We are very fortunate these days that therapies/treatments available can keep CML ‘at bay’. Although it will always be difficult dealing with a long term chronic disease my experience in living with it now for 13 years is do NOT give up. You mention the physical and emotional aspect. The physical aspect is to manage any symptoms you are experiencing from the treatment by exploring ALL the options. For example, my own most recent problem was itchiness/stinging sensation all over my body which was really annoying. After trying a bunch of things I found that ZYRTEC, an OTC allergy drug - simply reduces my problem about 90% which is fine with me, Before that, when I was on Sprycel I had pleural effusion and my doctor switched me to Tasigna. So, long term it’s a roller coaster ride to manage the side effects from the treatment but you should find answers. And there continues to be new treatment options. The emotional aspect (as is the physical) is different for everyone. Live your life fully don’t let it get you down. My own wife has secondary progressive MS, so I tell myself all the time I need to not dwell on what I have so I can care for her, and make sure we enjoy life and not dwell on minor aches and pains. CML is NOT a death sentence. Good Luck and stay strong

I see you are on Generic Sprycel. Check with your doctor, and always tell them what you are experiencing. I do not know where you stand right now with your blood counts etc. We have to give these drugs a chance, and you said you are on your TKI drug now for 14 months. If you read what I wrote, you can see that I was on Gleevec for 18 years before I got to where I am today. I am in remission, but if this remission ends then I will be back on a TKI drug again. My doctors told me if necessary to go back on treatment that I would be on Tasigna. You have other choices besides the Sprycel. Like I said tell your doctor everything you are feeling. Remember its good to belong to a CML group so you can see you are not alone in this journey trying to beat this cancer. I had a lot of side effects, but I knew without my Gleevec that I would not have the life I had for 25 years from original diagnosis.

Hi PAM: I hope you get to a PCR test of 0.000 soon, but I know people who have not made it to undetected, and they are still doing great. The invention of these TKI drugs, and the fact that we have a few choices of which one works better is a blessing. I was in the clinical trial for Gleevec back in 2000, and I did reach my undetectable status of 0.000 in 2002. I did not stop my Gleevec, and continued to take it until 2018 where it was giving me issues. My doctor told me to stop, and I would be monitored regularly with the intent that if my numbers were to start changing that I would be put on Tasigna. He does not feel I am a good candidate for the Sprycel due to possible pulmonary edema etc. I get my test in Feb, and if I am still undetected it will be 6 years of treatment free remission (TFR). My husband was so concerned about taking care of me all these years and I lost him to Esophageal Cancer in 2019. We just have to stay positive, and keep doing what we are doing. The research continues to find a cure, and that should encourage all of us with CML and other Cancer's Have a good day, because it is.

Hi Suzi, Thank you so much for the info and encouragement. About 99% of the time I feel very lucky that what I have is treatable without the number of side effects suffered by others in their cancer journeys. It's that 1% that creeps in occasionally that brings on anxiety but it's usually very short lived. Having a place to go to for words of wisdom and experience is much appreciated.

@ilahi, I wanted to check in with you. I hope you saw the helpful and supportive messages from fellow members. How are you doing?

Hi my name is Dana and I was diagnosed with CML in 8/23/23 I’m grateful to have Imatinib to take and fight this cancer. The only problem I’m experiencing is swelling of my feet, ankles lower legs and generally all over has anyone else experienced this and any suggestions would be helpful

I’ve been o prescribed sprycel have you had any bad side affects with this medication. I was on Gleevac but did not tolerate the medication mostly with severe edema any info will be helpful thank you