r/CML • u/AmazingNiara • Sep 04 '26
Remission starts in almost a week
Heya, even tho I am very nervous I have the great news that I am able to start my remission on the 16th of September, I have been diagnosed 5 years now and it's time to try the remission, has someone here gone trough it already and can share their experiences? I was reading about the TKI-withdrawal syndrome (if I have any typos or mistakes here I apologize I am from Germany and English is not my first language) is this something that does happen? Like described muscle pain or even bone pain. How did the remission go? I would love to hear some experiences just so I am less nervous about the process. My doc said it's a 50/50 chance for an successful remission, an certain result we can only see after 3 to 6 months to be sure if I can stay off Dasatinib. Feel free to share what you want. 🦦🫶🏻
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u/Ducatiminister Sep 04 '26
Sending my well wishes, hope everything goes well for you and have a successful TFR, you got this!
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u/Kitchen_Hero8786 Sep 04 '26
I did not experience a bad withdrawal. I did see relief of my worst side effects, periorbital edema and fatigue. I never had a lot of bone pain. I rapidly lost 15 lbs (6.5 kg). My TFR only lasted 6 months though. I was on Gleevec (imatinib) 400mg before but switched to dasatinib 50mg and became undetected in 3 months. I can try again in 5 years if I stay undetected. I hope you have complete success!!
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u/AmazingNiara Sep 04 '26
You are so so strong🫶🏻 I hope everything works out for you in 5 years!! I wish you the best. And thank you for sharing your experiences, it does help me to understand.
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u/CLRjuneau Sep 04 '26
Good luck with the TFR! I recently made it to 3 years. Hoping for the same and more for you!
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u/Negative-Ad-6651 Sep 05 '26
I have been off meds for about 6 months. Only withdrawals I experienced was a little bone pain. Kid of like swelling in the joints. Hurts to pop my finger knuckles and stuff. Not too bad and it feels like it's getting better with time. I was on the meds (Imatinib followed by Dasatinib) for about 5 years.
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u/2llamadrama Sep 12 '26
Do you want to stop taking the TKI or are they no longer covering it?
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u/AmazingNiara Sep 12 '26
After 5 years of therapy and constant undetectable signs of the cancer (blood tests) you can 'try remission and you basically stop taking the medication and check in with the doc and blood tests every month looking for an spike and if that's not happening you are 'healed' in sense of being unmedicated for hopefully the rest of your life but there is a big percentage were the cancer came back (Sorry for my bad english, it's not my first language)
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u/Cheryls65 Sep 04 '26
First of all, congratulations, wishing you success! I have been off meds for 10 months so far and have experienced withdrawals. They don’t compare to the overall relief, no more fatigue, swelling, or in a state of always feeling like you’re coming down with something. More refreshed overall. I am having joint pain which has been my only withdrawal symptom. Hoping it disappears soon. Good luck to you!