1. < Blood Cancers & Disorders

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

Posted by suzie71 @suzie71, Feb 17, 2019

I have had CML for 20 years. Would love to encourage anyone struggling with it or new to it.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

suzie71 | @suzie71 | Mar 27 4:21pm
In reply to @babyjakejake "Hi @suzie71 If you are still here, I would love to connect. I was diagnosed during..." + (show)
@babyjakejake

Hi @suzie71

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

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I just saw this reply. Sorry I have not followed up, but you can send me a message with any questions you may have. I am now 5 years treatment free remission (TFR), and please share what TKI you are on Etc.

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quita123 | @quita123 | Mar 25 11:38am

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.

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Bob M. | @bobmon | Mar 13 10:10am
In reply to @ericloomis "I was diagnosed this past June with CML. Currently on Sprycel which seems to be working...." + (show)
@ericloomis

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….

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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!

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Mentor
Lori, Volunteer Mentor | @loribmt | Oct 25, 2022
In reply to @ericloomis "They’re not saying much about the pain. They prescribed me Gabapentin to take 3 times a..." + (show)
@ericloomis

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?

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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?

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ericloomis | @ericloomis | Oct 25, 2022

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?

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Oct 25, 2022
In reply to @ericloomis "I was diagnosed this past June with CML. Currently on Sprycel which seems to be working...." + (show)
@ericloomis

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….

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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?

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ericloomis | @ericloomis | Oct 25, 2022

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….

REPLY
2 replies
babyjakejake | @babyjakejake | May 31, 2022

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.

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anglis | @anglis | May 30, 2022

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.

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anglis | @anglis | May 30, 2022
In reply to @suzie71 "I had CML since 1998, and went through Interferon and Ara-C which did nothing for me...." + (show)
@suzie71

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.

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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.*

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