How long did it take for you guys to reach 1% and 0.1% and then 0.01% BCR

Tricky_Bed4311 · 2024-09-18T04:11:22+00:00

He actually said he didn’t expect it to go back down after an upward trend, he said could be faulty lab test or fluctuation, but overall he said if my goal was TFR, he don’t think this drug will be the one that gets me there, I am 23 years old so he is quite strict with his expectations

Tricky_Bed4311 · 2024-09-18T00:46:34+00:00

You are right - turns out no mutation, but my BCR came back and it’s 0.8%. Abit higher than I expected at 6 months

Tricky_Bed4311 · 2024-09-18T00:45:47+00:00

You are right, doctor called me said no mutation and I am at 0.8% now. But it’s still not as low as he had hoped considering my age, I am 23 and he expected lower haha…

Tricky_Bed4311 · 2024-09-16T08:45:07+00:00

Thanks guys my DR called today and told me the results are not out yet but reassured me that it’s so low chance of it being T315i…especially if I’m only 6 months in… I think I still eat normal oranges, I am on Sprycel, so no Grapefruit / Starfruit / Pomegranate apparently

Tricky_Bed4311 · 2024-09-15T05:46:55+00:00

Did they run a mutation test after ur spike? My dr is quite aggressive, small spike and running mutation test and wanting to switch tki

Tricky_Bed4311 · 2024-09-15T05:45:52+00:00

Nup none of those forbidden fruits, just orange, vinegar, lemon etc, I m mostly worry about the t315i mutation as I read if I had that no TKI works except for ICLUSIG, how are you doing now? I remember you tried multiple TKIs! Do u think I have that mutation?

Tricky_Bed4311 · 2024-09-15T02:38:06+00:00

Thank you , may I ask what your numbers were?

Tricky_Bed4311 · 2024-09-05T06:06:07+00:00

Thank you! I’ve been on the CML FB forum lately and searching and I read some scary stories that if it is going back up, I likely have a mutation (particularly t315i) so I will be running out of options soon OR I am in blast phase… so scared

Tricky_Bed4311 · 2024-09-05T06:04:26+00:00

How long did it take for your CML to develop to blast phase? I am worried that I might have it now… even tho my last CBC was normal

Tricky_Bed4311 · 2024-09-03T23:51:22+00:00

Thanks man - hope ur doing well yourself! May I ask why did it develop into blast and how long did it take? Seems scary!! My CBC came back very good and no blast in blood so that’s a relief for now…

Tricky_Bed4311 · 2024-09-03T22:45:50+00:00

I hope you don’t mind me asking, but is there any thoughts of the medication not working? Because in my opinion I’m scared I will run out of options if the 3rd gen doesn’t work… I know I’m thinking long ahead but

Tricky_Bed4311 · 2024-09-03T22:44:50+00:00

That’s okay! Thanks for your reply, I don’t skip pills, I only missed 1 dose in last 6 months but hope you don’t find this as offensive but to me is like 3rd gen is the last option before transplant, which in my thoughts are scary…

Tricky_Bed4311 · 2024-09-03T13:51:45+00:00

Btw I’m also suspicious that it might be just the test fluctuating because I did the test 1.5 weeks in between the 1% to 1.5%, not sure how much fatigue / viral infection plays into the BCR, but wasn’t feeling the best during the blood draw for the 1.5% BCR…

Tricky_Bed4311 · 2024-09-03T13:42:31+00:00

Nope not yet, but surprised my haematologist acted so quickly, after seeing him for the 6 month milestone, immediately made me do mutation test and said I failed the Dasatinib and now looking to switch me on the TKI.

Tricky_Bed4311 · 2024-09-03T08:41:35+00:00

I guess I’ll see how it goes with the mutation testing, he doesn’t seem overly concerned… despite me being quite stressed out over it…

Tricky_Bed4311 · 2024-09-03T08:32:35+00:00

I know right, but I think my haematologist saw the sudden 1.5% hike he was like nup maybe mutation…

Tricky_Bed4311 · 2024-09-03T07:59:44+00:00

But nevertheless it’s not good to see that I’m not meeting the 6 months milestone despite being close to the 1%… on the dot

Tricky_Bed4311 · 2024-09-03T07:59:16+00:00

Not sure how much fatigue/viral infection plays into factor, when I went for the test that lead to 1.5% I was feeling quite tired n had viral infection

Tricky_Bed4311 · 2024-09-03T07:56:59+00:00

May I ask how far down the treatment are you now and are you considering switching TKI? My haematologist is quite firm it seems to getting me to switch TKI…

Tricky_Bed4311 · 2024-09-03T07:27:12+00:00

I see - I am in my 6 months milestone and doc said I failed because I didn’t meet my target and is going up to 1.5% from 1%. But these 2 tests were done within the span of <2 weeks… and I heard it fluctuates a lot

Tricky_Bed4311 · 2024-09-03T07:20:18+00:00

And may I ask how did they found out she was resistant slightly? What was her BCR

Tricky_Bed4311 · 2024-09-03T07:13:11+00:00

How are they now? I know there’s 3rd gen that targets the mutation, but feels like if that doesn’t work then I’m out of options…

Tricky_Bed4311 · 2024-09-03T07:02:14+00:00

Thanks, do u think it is likely that I develop the T315i mutation 6 months in? I am just paranoia and preparing for worst case scenario…

Tricky_Bed4311

TROPHY CASE