You are here

Appreciate some thoughts

Hi all,

As a follow up, would really appreciate some thoughts on next steps....

Was diagnosed in Oct 2019 and started on Imatinib in Nov 2019.  Here are my bcr-abl results on Imatinib:

2/17/20      >50%

3/27/20     17.687%

6/26/20     20.06%

Based on this was determined I was resistant to Imatinib and switch to nilotinib in July 2020. My mutation testing was negative. Here are my results on nilotinib:

9/02/20     1.116%

12/18/20    0.047%

3/26/21      0.28%

4/26/21      0.353%

Will be talking to my doc shortly....but would appreciate any thoughts on next steps. Pretty sure we’ll be discussing a TKI switch. Trying to stay out of panic mode, but failing 2 TKIs in my early 40s sounds pretty scary at this point.

Thank you!

            
 

My situation is somewhat similar. I was imatinib-resistant and shifted to dasatinib. I just achieved MMR and then lost it again. I have been waiting four months for my latest result. I was recruited for the next-generation sequencing trial involving a more sensitive test for mutations but that also came back negative.

There is an online Birmingham UK CML Zoom meeting on Saturday where a senior scientist will discuss mutation testing. I have some questions to ask at that meeting.

There do appear to be reasons other than mutations that would explain TKI resistance. I do not know whether any of those are measurable in the laboratory.

Kingburger, being under 1.0, the point at which CML doesn't present any real danger to our health is not a bad place to be; plateauing, or becoming rangebound at low CML levels isn't at all unusual.   IMO, it's too early for Nilotinib to be considered a failure.

Buzz

Thanks both. I spoke to my doc yesterday and we are going to wait 2 months for another blood draw - so no change in TKIs yet. Fingers crossed things start to go down!

That sounds like a good approach.  I would say that unless it goes over 1.0 I wouldn't rush to cycle through TKI's.  This may be a slight plateau.