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.

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@loribmt

Good news all around with the insurance approval for your son’s treatment and the arrival of your new little grandson any moment now! I hope everything goes smoothly with a ‘speedy delivery’ ☺️. This little bundle will bring a level of much needed happiness to your family. 💕

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Made me cry , cause we all need some sunshine back .. and the baby bringing some joy back to us all

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@cortney

Grandson should be here next 12 hours .. start target treatment this week. Insurance went threw ..

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Good news all around with the insurance approval for your son’s treatment and the arrival of your new little grandson any moment now! I hope everything goes smoothly with a ‘speedy delivery’ ☺️. This little bundle will bring a level of much needed happiness to your family. 💕

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@colleenyoung

@cortney, how are you doing? Did your new grandson arrive? May I ask what the next treatment plan steps are for your son?

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Grandson should be here next 12 hours .. start target treatment this week. Insurance went threw ..

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@babii

Thank you. I just found out tonight that my 59 yr old little brother was diagnosed with this. When I asked him what that meant for longevity he said 65% 5 year survivability. Yet when I got home and started googling what I've seen so far is longer, which is both more comforting but leaves me with questions.

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Hi: CML is very treatable. I was diagnosed in 1998, and there were no TKI drugs to treat it. I was told 6 months to a year without a bone marrow transplant. I was 52, and I am now 76 going on 77. I have been undetectable after taking Gleevec (Imatinib) for 18 years. I did the clinical trial for the Gleevec back in 2000. Prior to getting into the trial, all they could offer me was some heavy duty treatment that did not work for me. I am in a deep remission, and been off all treatment for 6 years. I do have to be checked constantly to be sure I am holding the remission. I am sure that your brother is or will be put on a what we call a TKI drug. There are various drugs and they just have to find which one will work for him Please keep us updated as to his progress. Tell him to stay positive, because he can beat this.

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@kaygrose

I am a 70yo female recently diagnosed with CML. 10 days ago I started taking Imatinib. The extreme fatigue hit like a wall starting about 3 days ago. It has truly been life-altering. I’m interested to know if others also experienced extreme fatigue and if it evened out any as their bodies acclimated to the med.

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Hi Kay: I have not been on here lately, but I was diagnosed in 1998 with CML, and I was only 52 at the time. I am now going on 77 this Nov. Imatinib is what got me through it all. I am now 6 years off of the Imatinib and holding a 0.000 undetectable status. I have to be checked constantly to be sure I am still TFR ( Treatment Free Remission). You or I should say I did get use to the fatigue. I had lots of bone pain in the beginning, and my doctor told me it was the Imatinib killing those cancer cells. There are various side effects, but the long range term of being treated is a good thing. CML is very treatable. Just take your pill everyday no matter how you feel. Rest if you need rest, and I learned to say NO to people who expected me to do more than I felt up to doing.

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@dega

CML Ph-negative BCR/ABL-positiveI am 65 and I have been diagnosed CML in Dec. 2023. Now I am taking HU 2x500 every day. I was told that TKI (Glevec or other) will not help me. I would like anybody with my case to share experience if had taken TKI with Ph-negative form of CML and if that helps them or not. Thank you.

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Welcome @dega. To help you connect with other CML members like @suzi71 @babyjakejake @anglis and many others I moved your question about tyrosine kinase inhibitors (TKIs) for your type of CML to this existing discussion:

- I've had CML for 20 years and want to encourage others
https://connect.mayoclinic.org/discussion/chronic-myelogenous-leukemia-cml/

You're right that Philadelphia (Ph) chromosome negative CML is usually treated with hydroxyurea (HU), low-dose cytarabine and interferon

I found this additional info https://cancer.ca/en/cancer-information/cancer-types/chronic-myeloid-leukemia-cml/prognosis-and-survival
"The European Treatment and Outcome Study (EUTOS) score is based on the percentage of basophils (a type of granulocyte) in the blood and the size of the spleen. It can be used to predict how likely it is that someone will have a complete cytogenetic response after treatment with a tyrosine kinase inhibitor (TKI) such as imatinib (Gleevec)."

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@loribmt

Oh gosh, you have a very stoic son. And I can certainly understand with all the stress on his shoulders that it was difficult to differentiate that from a potential illness developing.
I hope he gets his medication approved again so he can keep on with treatment. Patients shouldn’t have to beg for their meds…that is so frustrating. I had one of those targeted meds too. It was like jumping through hoops every month to get it approved one more time and when you’re not feeling well, that’s the last thing you want to do…acrobatics for health care!
I wish him all the best as he goes forward. One more class and he can get that diploma…but good luck studying with a new baby, huh? As his mom I can imagine you’d love to harken back to the days where you could cuddle him on your lap and let him know everything will be ok. He’s too big for your lap now, but he knows you’re looking out for him and will do what you can to help him and his new little family past this bump in the road.
Will you keep me updated with his journey?

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Gavin start Bosutinib next week.. his white blood cells number are going down.. also watching his Uric acid levels and on a medication for Uric acid. He tired and hurts , we have home health coming in and a social worker..a change of life style and some education. Still waiting on the baby.. hopefully this weekend! Felt like a rollercoaster ride of emotions last 3 weeks. We all seem to be doing well. I am on FMLA but I been back at work.. lots of support and prayers

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CML Ph-negative BCR/ABL-positiveI am 65 and I have been diagnosed CML in Dec. 2023. Now I am taking HU 2x500 every day. I was told that TKI (Glevec or other) will not help me. I would like anybody with my case to share experience if had taken TKI with Ph-negative form of CML and if that helps them or not. Thank you.

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@martin1958

I, too, have had CML for 20-plus years. They have made such great strides since I was diagnosed. I have been on Gleevec or Imanitib during most of that time and it has worked wonders. I do suffer from some fatigue but that's a small price to pay for what this wonderful drug does. Anyone diagnosed with CML, keep your head up. There is life with CML. God bless all of you.

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Hi Martin, Welcome to Connect! And thank you for sharing such a positive story about your CML and the treatments you’ve been taking. Twenty years is a long time since your diagnosis and you’re right, so much has changed since then with available medications to help keep it under control. Your story and attitude are very inspirational.

So happy to have you here and I hope you’re a regular contributor to the discussion. Were you looking for anything in particular that led you to Connect?

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@cortney

He was having every symptom.. not telling us about some of them . We thought he was stressed , graduation and a baby due ... He is home, waiting for second target treatment pill to be approved. He very nauseous and diarrhea at this time. He has to do summer school for one class, to graduate! I appreciate everyone here and the extra education

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Oh gosh, you have a very stoic son. And I can certainly understand with all the stress on his shoulders that it was difficult to differentiate that from a potential illness developing.
I hope he gets his medication approved again so he can keep on with treatment. Patients shouldn’t have to beg for their meds…that is so frustrating. I had one of those targeted meds too. It was like jumping through hoops every month to get it approved one more time and when you’re not feeling well, that’s the last thing you want to do…acrobatics for health care!
I wish him all the best as he goes forward. One more class and he can get that diploma…but good luck studying with a new baby, huh? As his mom I can imagine you’d love to harken back to the days where you could cuddle him on your lap and let him know everything will be ok. He’s too big for your lap now, but he knows you’re looking out for him and will do what you can to help him and his new little family past this bump in the road.
Will you keep me updated with his journey?

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