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No cytogenetics response to Imatinib

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Hello all.

I hope you're all staying safe and well. I'm after some advice please.

I was diagnosed with CML in December 2020. I was prescribed with Imatinib 400mg a day. Aside from some tiredness I am starting to feel a bit like my old self and building my strength and energy levels back up slowly.

I saw my Haematology Consultant on Monday, I'm 9 days shy of my 3 month milestone. The Haematological Response is now completely normal however he says there has been no Cytogenetic response with Imatinib. He's left me on Imatinib for another 4 weeks and has run the blood tests again. If there is still no response he is considering changing my medication to a 2nd generation tablet, not discussed which one yet.

To be honest I was really disappointed but he's not worried at all. I just felt as if it was one less tablet available to help me.

Can I ask... is this normal ???. I have a wonderful support network but I have the greatest fear in the back of my mind of running out of available medication and then what next.

Thank you all in advance.

Take Care

Denise

Hi Denise,

It may be that you respond within the next month and will therefore be able to stay on imatinib if the response is good enough. An optimum response at 3 months would show BCR-Abl at 10% or less. However, some patients take longer to get down to this level and some get there sooner. It is good that you have a complete haematological response as this show your disease is responsive to TKI therapy, so I am not surprised that your haematologist is not worried.

The trick is to find a TKI that suits you as an individual. We already have 5 to choose from: imatinib, nilotinib, dasatinib, bosutinib and ponatinib - fairly unique in the world of cancer 'therapies' - with another TKI (asciminib) showing extremely good results in phase lll clinical trial. If your doctor eventually advises  that you to change from imatinib, then that would not be unusual, and many of us on this forum have changed drugs at some point.

You obviously have a pro-active doctor and that is at least half the battle. I know it's hard to be confident so soon after diagnosis but the vast majority of patients in chronic phase do respond very well to one or other of the currently available TKis.

Good luck with your next result, 

Sandy

 

 

 

Hi Sandy

Thank you so much for your reply. 

My doctor is really good to be honest. Brutally honest but very much pro active. Its good to know that this is all normal, well as normal as it can be.smiley

I know its only early days, I think I hoped all would go to plan with this first TKI.  But as in life there are glitches and tweets needed. 

Take care

Denise x

No that’s not normal the guidance is 6-12 months to reach CCYR not 3 months and not 4 months this is a very premature decision if ever I’ve seen one on this forum. The words from my own consultants mouth when I didn’t reach MMR at month 12 was that 1% (CCYR) is “satisfactory”. I reached MMR at 30 months. You’re not slow by any means if you’re at <10% at about 3 months that’s the 1st goal. CCYR <1% at 6 - 12 2nd goal, 3rd goal MMR 12 months or anytime thereafter.

My personal feeling is that as many TKI must and should be left in your Arsenal for when you really need it. There is absolutely no reason to switch for at least another 9 months of things continue to fall. The trend down being the most significant indicator not the results themselves.

There is evidence that switching drugs can inadvertently causes mutations if you don’t have one which you most likely don’t.

I made CCYR 0.7% at the 6 month mark. Don’t be bullied to switch when it’s not necessary. You’re on the safest of all TKI too and if I could have started on Imatinib I would have done so in all honesty.

I think you need to have another conversation with your consultant for sure as this is very premature. If you had higher risk disease like I did at diagnosis you would have been started on a 2nd gen to bring things back quicker. The fact you’re on Imatinib informs me that you were not “high risk” perhaps? I do realize that starting on Imatinib isn’t always because you’re low risk but when I asked why I was started on Nilotinib I was told to get things moving more quickly. I also have a CML friend who went the other way was slow on a 2nd gen TKI switched to Imatinib and plummeted down and he’s in MMR4 and doing very well!

Al

 

Hi Alex,

I think Denise indicated that she has not had a cytogenetic response at the 3 month milestone. This is why her consultant has indicated that she may benefit from a different TKI as the expectation is for a cytogenetic response of less than 10% at 3 months. 

Sandy

Hi Sandy

Oh sorry I see I read Cytogenic response as CCYR for some reason. Silly me again.

Alex

Hi Alex

Thank you for replying.

My consultant says there's been no cytogenetic response at all although my bloods are now completely normal. We are to have a discussion on the 14th April once the bloods taken on 15th March are back. I'm surprised I've got any blood left after so much was taken. smiley
I must admit I would like to stay on Imatinib if possible and keep the others for the future but realise it may not be possible. The fear of running out of tablet options does keep me awake at night. I know its early days and all this is new to me.....fingers crossed for a compatible one.
Take Care Alex, have a good weekend, stay safe.

Denise x

Hi Denise,

Sorry about that I misread that you had not had a cytogenic response for complete cytogenic response for some reason.

Yes the early days you are a pin cushion and for someone who hates needles this was doubly an awful time. After 6 months into treatment that all changed and no doubt the same for you too soon. Easy to say but dont be worried its so early for you in terms of treatment. Yeah keeping as many options available is the best way forward but getting you to respond timely is important also. But the good thing is this is a slow disease if left unattended and you are being attended to so it will be even slower from now on.

All the best

Al

Hi Denise,

Maybe you could get some encouragement if your consultant could explain your level of cytogenetic response more precisely.  It sounds like it takes about a month for you to get your results.  If that's the case, your most recent test result is based on blood that was drawn less than three months since you began treatment - if my math skills are working. ;) 

Do you know how your cytogenetic response was measured?  I think it's usually based on a FISH or PCR test result, with FISH being the more accurate test in the early days of treatment.

It's good that your consultant ordered another evaluation of your response.  Hopefully you'll get some encouraging results!

Have a great weekend,

Kirk