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

Hi: I sent you a private message, please let me know if you got it. I can help you get through this ordeal because CML is very treatable. I am always around .

Suzie71, it's comforting to hear your story about your long-time experience with this disease. I am 76 and was diagnosed in November of 2023 after some alarming blood tests showing platelets of over 2,000. I was sent to a hematologist/oncologist, who I like very much and have confidence in, and after a bone marrow biopsy and further testing was told I have Ph+ CML. I'm struggling with a combination of fear, anger, depression (why me??), and of course, trying to learn as much as I possibly can about this disease. The support group here has been so helpful.
Any advice on handling the symptoms, both physical and mental, day-to-day? I'm in a clinical trial by Novartis and receive my very expensive medication, Tasigna (nilotinib), for free and attend appointments in Eugene, OR, about an hour and a half each way travel time, at first every two weeks, and now closer to two-three months apart. There are symptoms from taking the medicine but fortunately, they are fairly mild in my case, so far.
Thanks for being here.

Being told you have Leukemia is the worst day of your life, but I was diagnosed in 1998 with CML, and I am still here to encourage and support anybody who does not know what to expect.
I am now at the 6 year mark of still holding undetectable since July of 2001. Its a lifelong battle, but the best thing is that it is treatable. Diagnosed when I was 52 years old, and I will be 77 this coming November. I did not have a bone marrow transplant.

I just saw this message after all this time, and have been dealing with a lot of issues other than CML. I go next week for my blood test, and if I am still and I pray that I am still undetected it will be 5 years of no treatment I am TFR Treatment Free Remission. This Feb will be 6 years total with no treatment as long as I remain undetected. CML is very treatable, even if people have a trace still showing in the blood work.

I was diagnosed in December 2020 and began on Sprycel in January 2021. According to my doctor my bloodwork showed improvement at every test and I'm in the 'boring stage'. The last 9 or 10 months I've had an increasing amount of aches and pains. In particular my legs and back. I attributed it to my change from full time employment to retirement. This spring I've increased activity with gardening, activity with grandkids but the pain continues and sometimes increases along with getting out of breath with any increase in activity. I never even considered that it had anything to do with CML or taking Sprycel until reading others posts. I haven't told my doctor about the aches and pains because I thought it was an 'age thing' (I'm 61). Is it normal to develop these conditions after being on meds for a year and half? To be honest I had not taken this illness that serious because my sister had an aggressive form of cancer and I felt like I got off easy with a curable form of cancer.

I just saw this reply. Sorry I have not followed up. I am now 5 years treatment free remission (TFR), and please share what TKI you are on Etc.

Hello everyone, I was diagnosed in October of last year with CML and I’m anemic. For someone who loves the cold weather, I now can’t tolerate it anymore.I was on hydroxyurea for a couple of months before my doctor put me on taking Sprycel. This is all new to me and if anyone have any insights they would like to share please don’t hesitate.

Hi Eric - I've been dealing with CML since 2010. Started with Gleevec then in 2013 moved to Sprycel which did a great job until unfortunately for me caused a pleural effusion in 2019 and I had to move off of it to Tasigna now. Anyway - I recall having occasional muscle and joint pain with Sprycel (usually in evenings) however after some period of time maybe 9 - 14 months or so it totally diminished so there is hope in that for you!. Certainly everyone is going to react to these therapies differently, but on the positive side if you stay on your Sprycel dose it really hammered down the BCR-ABL1 counts, I even went to zero for about 2 years but then had to reset the clock when it came back slightly. GOOD LUCK!

I hope some of our members I mentioned will be able to offer you some answers. CML is out of my area of experience. I had AML (acute myeloid leukemia) and it developed so quickly that I was in chemotherapy and transplant before it had a chance to cause bone pain.

You’re on so many meds for pain, that has to be discouraging. You must feel pretty sluggish during the day. Do you work outside the home?

They’re not saying much about the pain. They prescribed me Gabapentin to take 3 times a day to keep the pain to minimal. I also have oxycodone and morphine. I would like to get off the oxycodone at some point in the near future and am not sure if it is normal to have to take medications like this for pain management for this type of cancer or do most people just have to take the TKI and that’s it?