I have been fighting CML since 2013. The treatment was killing me. Kidneys, heart issues, etc. What number is at "acute" and what number is " Blast." I am not willing to stay on current treatment just to see "how fast my kidney function and heart failure. It has a nightmare.
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Hi,
Your experience of TKI therapy is unfortunate to say the least. I have not heard of many people with such a strong negative reaction that it would make them stop therapy and risk progression of this disease.
To answer your specific question: what number (of PH+ cells) equal 'acute' and number is 'Blast'.
Accelerated phase CML is usually diagnosed when 'blast cells' (immature white blood cells) are seen to be increasing in your marrow/blood tests, generally at increasing levels between 5% and 30% (some clinicians consider anything between 5% and 20%)
'Blast Phase' (sometimes described as Blast Crisis) is when the cells start to increase quite fast and upwards of more than 30% blast cells in your marrow and blood.
When CML starts to progress to these later stages of disease there is an increase in other cell abnormalities and if left to develop it is extremely difficult to treat effectively.
Usually blast phase CML is treated with high dose chemotherapy in order to get you back to a 'second' chronic phase- then if possible a stem cell transplant should be undertaken if the disease is to remain under control.
Further TKI therapy post high dose chemotherapy may hold it in 2nd chronic phase for a little while, but because there would have been further clonal changes the whole disease picture is totally changed and it behaves more like an acute leukaemia.
Generally blast phase CML only has a survival rate of up to 3 months before your immune system is overwhelmed by immature cell sand is no longer effective in controlling infections.
You really would be advised to find another TKI therapy that is more suitable for you- there are 5 to choose from and each has a different side effect profile. You urgently need to talk with your clinician about the options open to you.
Do not leave this disease without therapy until you see 'blast cells' increasing and restart TKI therapy- in the vast majority of cases this is not a good plan.
I hope your doctor will advise you to change to a different TKi.
Sandy
Well said Sandy.
I can thoroughly endorse what you said and just from having had the personal experience of being at acute phase when I was first diagnosed and undergone years of treatment without TKI's and including a matched unrelated bone marrow transplant many years ago. I was told I'd be lucky to see the month out at first but went through extremely difficult and high risk treatment that hasn't been without consequences.
I've been on imatanib since it was in clinical trial and about 15 years. Believe me compared to other treatment options and the stuff you have to go through when it's in blast phase being on tki's is a walk in the park.
You say you're "not willing to stay on current treatment". IF you're on tki's then just be aware that of course you're entitled to do what you want but coming off means that you're heading down a path that frankly I wouldn't be wanting to tread and knowing what I know now am REALLY glad to have left behind. But then I'm too busy living to want to die.
Believe me the treatment you have to have IF you're in blast phase is highly likely to kill you and IF it doesn't then in all likelihood you will be left with serious long term consequences.
You've also said your medication is "killing you". That in itself isn't the norm IF you're on tki's. Yes there's side effects and yes they can affect different people in different ways. There's also ways to reduce the side effects. Go back to your consultant and try to get the issues sorted with investigation of the heart and kidney problems which might well be conincidental rather than consequential. But you need to discuss your concerns with your consultant who might possibly recommend a different tki if that's a possibility.