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.

I intend to keep sharing, because that is how patients learn what CML is all about with treatment etc. I just think sometimes somebody might feel the need to send a private message, and I am always available.

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@suzie71

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.

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Hi @suzie71, hearing from longtime survivors like you offers hope. You're very kind to offer private messaging with specific members. However, I’d like to underline the benefit of sharing in the group discussions. By posting in the CML-related discussions in the Blood Cancers group many can benefit from your knowledge and experience, including those people living with CML who haven't posted yet. 🙂

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@ortina2023

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.

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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 .

REPLY
@suzie71

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.

Jump to this post

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.

REPLY

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.

REPLY
@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 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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@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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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.

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@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. I am now 5 years treatment free remission (TFR), and please share what TKI you are on Etc.

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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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@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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