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Considering switching to second gen TKI

Hi All,

15 Aug 24: 84.343%
28 Oct 24 - 27.299%
Nov 24 - tbc on 23rd Nov

I am 26 and have been on 400mg of imatinib since 15th Aug 2024. I posted on a separate thread about experiencing bone pains, it has now been 12 weeks of bone pains but they have reduced quite a lot, sometimes my feet feel a bit heavy which is when I feel like I wouldn't be able to run and on some days I feel completely fine. Another thing I have noticed is that when I breath out heavily or make a sudden movement, I get a quick darting pain in my outer feet. Could this be a sign of peripheral neuropathy? I have been back in the gym for the past 4 weeks and feel like I can train just as well as before my diagnosis, I ran for 15 mins straight as need to get my fitness levels back up. My only issue is that from time to time I still do get these aches (on some days) which I feel like is preventing me from getting back to playing sports. Other than these occasional pains, I have no other side effects and continue to do my day to day activities.

I have an appointment with my consultant on 23rd December to discuss this, he is also very keen on getting me back on the football pitch and tennis court as soon as possible and mentioned about switching TKIs which could get rid of these bone pains.

My only worry is that switching to another TKI could cause a load of new side effects, I feel like I am close to getting rid of these current side effects but am also worried that they might not go. Not sure if switching TKIs might set me back further.

It would be interesting to see what people's thoughts on this are.

I was on Imatinib for 11 years and went through the same thing. My advice would be to stay the course. You are making progress and that takes time. It took me 5 years to get to MR3 or MMR. Bone pain is par for the course. Keep going to the gym and stay fit. As long as the number keeps declining you should be good to go for now.

I'm an imatinib patient approaching 18 years. As long as your number continue going down I'd also suggest you're doing pretty well. Do you know what your WBC was at diagnosis? Your body is adjusting to the meds and that takes a little time.

Hi,

My WBC count was 330 at diagnosis.

Ok so WBC not that high at diagnosis (some people are in the tens of thousands when diagnosed) but your body still had some adjustment to make as that reduced. I guess your now about back to normal around 8?

Yes, I guess it will take a bit more time for my body to adjust to the medication and will hopefully settle as I get to MMR. Maybe it is more realistic to resume sports some time in Jan next year.

My WBC count returned to around 8 within 3 weeks of taking imatinib, the aches only began once my BCR ABL % started to drop which makes sense as it is attacking the bone marrow.

I was one of those people with a WBC in the tens of thousands. Maybe that why it took so long for me to reach MMR.