PCR tests / TKI milestones in CML

Hi, my husband was diagnosed with Chronic myeloid leukaemia in September. He will be finding out the results of his first PCR this week. It is affecting him a lot, mentally, because he thinks this will indicate his prognosis, whether he will respond well to treatment or not in life generally. We have very young children. He is aware that there’s only a handful of TKIs out there, so I think his worry is, if he doesn’t respond to one TKI, it would be one ruled off and options then eventually start to become limited and there’s no guarantee of response to others. He’s been in a state of despair on the build up to this week. If anyone has experienced what these 3 monthly milestones has meant exactly, please do share :pray:t4:

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Hi @Ta5 Having read your post I am very much aware of my experiences.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 21 yrs ago.
My husband has never mentioned my leukaemia since.
There is no right or wrong way of dealing with things, he is a head in the sand type of person.
My son was in his early 20’s and I was the bread winner.
I am on 3 to 6 mthly blood tests and I still get anxious before, during and after tests.
Research and treatments have come on leaps and bounds in those years.
This regular testing is called ‘active monitoring’ or ‘watch and wait’ I reckon naturally they are anxious making and in my experience they always will be, but my anxiety has eased a bit over the years.
I believe this testing is to monitor the progress, change or stability of the tests and to be used in conjunction with other markers the consultant uses.
I attach for you the Blood Cancer UK details on Chronic myeloid leukaemia, active monitoring and money and work.
Chronic myeloid leukaemia (CML) | Blood Cancer UK
Active monitoring (watch and wait) | Blood Cancer UK
Blood cancer: money and work | Blood Cancer UK
I would say be very kind to yourselves and good communication between you both is a good starting point and try not to second guess what the other is thinking.
Perhaps you and your husband might like to write down all your fears, thoughts, questions and practicalities for his next appointment or to ask his nurse, if he has one.
I reiterate there is no right or wrong way of dealing with things so just be kind to each other.
The Blood Cancer UK support line is there for you on 0808 2080 888 and we are also there for you.
How are you feeling and coping, we are here for you?
Look after yourselves and I was in shock for a long time and found the holiday period very difficult.

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Hi @Ta5 I do understand the anxiety about the early PCR results. To some extent i still feel anxiety until i get the result and i have been on TKIs for over 20 years. I hope he receives a good drop in this first one and continues to see the rates fall. There will be blips along the way of plateaus and slight rises but it is the general trend that matters. Most people do well on the first TKI but i know that is not reassuring when you don’t have a clue if it is working for you. There are a number of alternatives in this day an age so it would be very unlikely if one doesn’t work for him.
I wish you both all the best and send you my happy thoughts.
x

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