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.

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

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 "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?

REPLY
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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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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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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pam62 | @pam62 | Jun 18 12:13pm
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….

Jump to this post

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.

REPLY
suzie71 | @suzie71 | Jul 29 12:33pm
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.

Jump to this post

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.

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