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Not responding to treatment 1 year on

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I am 40 and I was diagnosed with CML in August 2020 at Leicester Royal Infirmary UK and started on Imatinib.  All was going in the right direction, but then 9 months later back in May of 2021 my BCRABL was 18% and static.

I have now been swapped to 100g Dasatinib and they will do my next BCR ABL test end of August and contact me again end September when results are back… my standard bloods i have had in the interim are now showing a low WBC too. Although won’t be contacted again now till my BCR ABLE comes back end sept…

Also there has been talk of taking my bone marrow sample again, as initially they never got a full sample as although they had 9 attempts at diagnosis stage!

I am now 1 year on and don’t know what to think now? I am no where near 0.0% and although I feel ok in myself I am unsure about the future and should I be pushing my consultants for more.

Has anyone been in a similar situation or have any advice for me please?

Thanks in advance for your help :)

Sorry to hear you're having trouble with plateau-ing at 18% but good that you're feeling ok.

Are you getting back to normal life?

Two things b that are worth checking , if the docs haven't already:
1. How much tki is left in your system after 20+ hours. The reason we need to take daily is that the concentration/saturation of tki in our system needs to remain constant. You might be metabolising too fast
2. Whether you have a mutation of cml

I would also ask the reason why you were put on Datasinib rather than the more usual second line to imatanib which is Tasigna.

Good look!

Thanks Eva

Luckily I have always been able to continue as normal with working full time and general life. 
 

They have checked for a mutation via blood test and nothing came up. They are considering taking another bone marrow sample as they couldn’t get a proper full sample at diagnosis.

We went with the Dasatinib as the other drug had side effects which linked to a exsisting family medical history issue. 

So although I feel fine and well I am just concerned with the thought what if I am drug resistant and why aren’t I responding to the drugs. I know I will know more after the next BCR test next month, but it seems everyone else responds quickly and then I worry!

Thanks 

 

Interested in your comment re Nilotinib being the usual second choice as I am currently awaitng results of tests re mutation  while on Imatinib and may have to change TKI but my consultant recommends Dasutinib as next choice not Nilotinib to most patients unless of course there are contra indications either way. I did not question it as am hoping not to have to change as have got on OK with Imatinib until now but I do recall her saying she found most people got on better with Dasutinib and there were less compliance problems as it was easier to take.  I suppose I shall have to start looking into it in detail as I understand I can choose if the loss of MMR turns out to be the result of imatinib resitance and not lack of imatinib during recent illness.

Without mutation nilotanib is a second line for imatanib.

I have no experience with mutation but it would make sense that its another drug.

Actually she said either Nilotinib or Dasutinib were authorised as 2nd line treatments funded by NHS and in her experience more patients moved to Dasutinib particularly in the older age groups, as I understood it if certain mutation(s) were found a third line TKI would be funded but I hope I don't end up having to change after all.  Maybe different hospitals/research teams vary slightly

Second line decision between dasatinib and nilotinib is generally down to issues such as previous heart problems, or potential for lung problems. Both drugs are perfectly approved for second line (and first line actually), and NHS funded second line treatments. It’s really the haematologists preference in discussion with the patient. The hospital where I am treated fairly strongly prefers dasatinib to nilotinib all other things being equal.

For example, someone might have a job that makes fasting at regular times hard to dasatinib might be preferable. Similarly, if someone has a history of lung problems nilotinib might be preferred. Maybe they are forgetful, and a once a day regimen is going to be better.

There is really no single standard pathway that is rigidly followed like a flowchart. 

For info, I have no experience with NHS guidelines either. From what i have seen advice for CML varies between countries /continents especially depending if you or your insurance pays for treatment versus the state.

When i read your post, i understood that you did have a mutation identified, but seems like that's not the case.

I dont know yet still waiting tests from Kings I sincerely hope not.

Useful info thanks! yes the side effects profile do seem a little more serious with these two TKIs but of course they are said to be more effective than Imatinib, all about risk benefit analysis I guess