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

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?

Hi @ericloomis, welcome to Mayo Connect! I’m happy you found us so that you can Connect with other members who have Chronic Myelogenous Leukemia (CML) such as @living @anglis @craighatescancer and @suzie71
Hopefully they’ll be able to share their experiences with you and offer some insights to this form of leukemia.
I’m sorry you’re experiencing so much body pain. It looks as though you are seeing some positive changes in your bloodwork. What does your Hematologist oncologist say about the pain? Will it diminish as the leukemia gets under control?

I was diagnosed this past June with CML. Currently on Sprycel which seems to be working. My bcr-abl has come down when I just got my first results since being diagnosed. However I experience a lot of body pain in my muscles and joints especially my knees and toes and elbows. I am on a lot of pain meds currently but wondering if anyone else has had this issue and if it will go away??? Still very new to all of this so looking for some people that have CML as well….

Thanks everyone! I was diagnosed a year ago and have been on gleevec since July 2021. I hope that eventually I will get to the point where I can try coming off medication but I know that is far in the future for me. My BCR-ABL went up slightly at my last blood draw so I may need to switch to on of the other TKI medications.

Jake, there are many many people that have been cured and many are still living with CML. IF you want to talk, I'm just a window screen away, sweetie. I'm sending you healing thoughts and gentle hugs.

OMG! SUZIE71! That's wonderful news! Congratulations! I'm so happy to hear of your cure. I myself am getting ready to come off of Dasatinib for 2 years to see if I'm cured. My last BCR showed undetected. If in the next 3 months it shows undetected, then fingers crossed, I might be cured.

*I was diagnosed in 1995. Hydroxeria, then interferon, I was on the study for Gleevec (STI571 was it clinical trial name here in London) then Dasatinib.*

I had CML since 1998, and went through Interferon and Ara-C which did nothing for me. I started Gleevec in Oct of 2000, and continued to take it all the way up to 2018. I have been off all treatment since Feb of 2018, and have been PCRU since 2002. My doctor told me in January that I am declared cured after all these years. I just want those who have CML that it is not a death sentence. Newer and Better treatments will get you through this disease without a BMT. I just wanted to encourage anyone, especially newly diagnosed patients that they can beat this disease.

Hi Jake, welcome to the CML discussion group. You may also be interested in this related discussion where you'll meet fellow CML-ers like @living @anglis @craighatescancer as well as @suzie71
- Chronic Myeloid Leukemia (CML) https://connect.mayoclinic.org/discussion/chronic-myeloid-leukemia-1/

Jake, in the meantime, can you tell us a bit more about you? I assume that you diagnosis date was a typo since it's not quite yet June 2022 😉 When were you diagnosed? What treatment(s) have you had? How are you doing today?

@lisalucier thanks for linking to the patient education program about CML. I found it helpful and wish I had known about it when I was first diagnosed.

Hi @suzie71

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