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2 years treatment free - update

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Hi everyone

I hope everyone is doing well as we approach the last quarter of the year. This is just an update from my latest doctor's visit after two years off all medication. The latest BCR-Abl test has come back as 0.0048% and the doctor is happy with my progress. She thinks I have a good chance of staying off the TKIs forever and has asked to see me in December again. It's unbelievable for me to think that the last time I took imatinib was 18 August 2022, and I once again want to offer hope to people who have had a slow response or challenging side effects - I had both of these and never thought I could ever attempt this.

For those interested, my BCR-Abl results since stopping all medication were as follows:

Aug 2022 - undetectable
Sep 2022 - 0.003%
Oct 2022 - 0.003%
Nov 2022 - 0.0042%
Jan 2023 - 0.003%
Apr 2023 - 0.003%
Jun 2023 - 0.0039%
Aug 2023 - 0.01%
Nov 2023 - 0.0067%
Jan 2024 - undetectable
Mar 2024 - undetectable
May 2024 - undetectable
Aug 2024 - 0.0048%

Thanks once again to everyone for the help and support along the way.

Best wishes from South Africa

Martin

Martin those are some interesting results. What were you thinking a year ago when you were at the high side of MMR? I took a screen shot of your results. I plan to give TFR a whirl soon. Your experience shows that slow and steady wins the race. It also shows there are bumps in the road but not to get worked up over it. Congrats !

That's fantastic to hear. I'm just starting my journey. 60 days on Imatinib for me.
Blood cell count normal so a good start I hope.

Pojo, from Martin’s results table the highest he’s been during TFR is MR4 which is ten times lower than MMR.

David.

Oops you’re right David of course, sorry about that Martin I meant no disrespect.
Please forgive me.
Martin your experience is extremely encouraging.
Looks like you’re out of the woods.
Must feel great to be drug free.

Hi everyone and thanks for the replies!

Pojo, please don't apologise as I didn't take the slightest bit of offence because I know exactly what you meant. When the numbers started rising last year, I thought that I'd soon have to restart a TKI and was preparing myself for the asciminib. But I had a lot of help from this forum - from encouragement from people like kat, David, ColoradoGuy, pigeon and my good friend Alex, to excellent advice from people like scuba and Buzz, who explained some of the biological facts to me. Buzz also shared the experience of BCR-Abl levels rising and falling while in TFR and it seems not at all to be uncommon for levels to fluctuate. Essentially, if you stay in MMR there is no cause to panic and restart.

Sadly, I have gotten so used to this crazy condition surprising me at every turn that I'm fully expecting to have to restart some day, but right now I'm enjoying being off the medication and eating as much grapefruit as I can while I'm allowed to!

Ross, I'm so sorry that you've had to join our little community and I wish you every success with your recovery. If there are any questions please make use of this forum as it has been a major source of help and comfort to me, and I'm sure it will be for you as well. The take-away is that this is a very treatable condition and that recovery is possible for the vast majority of patients.

One more thing I'd like to add: after starting TFR I still had all the side effects of the imatinib that had come to be the unwelcome guests in my life: bone pain, joint pain and cramps. It took around 18 months for all of these to disappear and I finally feel as well as I did before developing CML. So it looks like the side effects can persist for a while even off the medication.

I'll keep everyone updated as I go along. I have found it really encouraging to read others' experiences and to look at the BCR-Abl levels that others are willing to share, as all of this data can be used to inform patients of the way forward, so I hope my experience will also assist others in the long run.

Onwards and downwards, and best wishes from South Africa

Martin

Thanks for your positive words Martin, they are really appreciated. I was given my official diagnosis on the 2nd of July, so I have just completed my first 60 days on Imatinib.
I was lucky as my CML was picked on my annual work medical screening, so my blast cells were only at 0.2% at my diagnosis.
My bloods were all back within normal range after 4 weeks of treatment so I can't have asked for more up to now.
I'm just hoping I have as much good luck with my molecular response. I have my first PCR test at the end of September.
I'm not naive enough to believe there won't be bumps in the road ahead, but hearing stories like yours give me much cause for hope👍