Can someone please help put my mind at rest ☹️

Hi all, I have posted in here before but nothing recent as I think I’m trying to bury my head in the sand…….but anyway! I was diagnosed with Chronic myeloid leukaemia in June and 2 weeks later put on Imatinib, my white cells were down to 1.3 on my last blood test and tbh honest i feel horrendous, breathing is awful, back pain is terrible and I just don’t feel quite right. On my last blood test they did the BCR test (I think that’s what it is) my consultant told me that by the time my December appointment comes around (which is tomorrow) he will be able to discuss the results with me and a course of action, no more elaboration on that so I’ve used google to find answers. What is bothering me is that today I have gone for my bloods again in preparation for tomorrow and they told me that my haematologist has again requested BCR test - why would this be? When I only had it done 6 weeks ago and I was under the impression that it was only done a 3-4 times per year? My head is thinking all sorts of crazy things now. The phlebotomist obviously couldn’t tell me anything just that she was asked to send more bloods off. Any help would be appreciated, im so anxious at the moment x

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Hi
I’m guessing that your bloods and BCR will be compared to your last ones to see if there are any changes

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Hi @CarlaWild

Thanks for posting and I can really sense your worry coming through as you post. It is very understandable to feel anxious before an appointment, and I’m glad you felt able to reach out here.

Our information for Chronic myeloid leukaemia explains a little more about the BCR test: Tests before and after diagnosis | Blood Cancer UK

It says:

Every three months, you will need to have a genetic test known as a BCR::ABL1 test. This is sometimes called a PCR test, as it uses a technology called polymerase chain reaction.

The BCR::ABL1 test uses a sample of blood or bone marrow to check for the BCR::ABL1 gene, found in the Philadelphia chromosome. The BCR::ABL1 gene produces a tyrosine kinase protein, which causes cancer cells to divide quicker and live longer than healthy cells. TKI medication aims to stop this protein from being produced by the BCR::ABL1 gene, so this test tells doctors how well your treatment is working.

I hope this reassures you that it is likely they are checking the effectiveness of your treatment and it isn’t uncommon for them to order this test.

You mention feeling terrible at the moment. It could be worth writing down how you’ve been feeling and any questions you have in advance of the appointment too. It’s worth letting your consultant know about this and seeing if there’s anything they can do to help manage it. You can ask them then if there is a reason they ordered another BCR test too.

It’s difficult not to speculate on the timing of it and to worry but the best thing is to ask them directly tomorrow so you understand. Also, please try not to google - it’s very tempting to, but it doesn’t always help with the anxiety. Our information about Chronic myeloid leukaemia is here, and will hopefully answer any questions you may have if they’re coming up for you tonight: Chronic myeloid leukaemia (CML) | Blood Cancer UK

Sending you all best wishes for tomorrow,

Take good care of yourself tonight and try to do something nice for yourself if you can.

Ali

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Is this normal to have this BCR test done twice in a 6 week period?

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Hi @CarlaWild I wouldn’t worry about having an additional test as it doesn’t mean there is a problem. I was diagnosed in 2003 and BCR tests are done at my main 3 monthly appointments but they are also done between times with no reason given to me. You are still in the early stages so they may need more details on the trend. Hopefully a downward trend. The BCR shows the percentage of cells affected by the leukaemia. Early days it can be very high but the reduction is pretty fast at the start normally. Some people react better to one drug than another so you may not stay on imatinib forever> Luckily there are now many drugs that can be used and the one best for you will be found. Imatinib is still a very good drug even though it was the first to any real benefit. Side effects can often reduce in time but if they are effecting you quality of life then a swap may be on the cards

All the best
C

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Oh @CarlaWild I can feel your anxiety just reading your post.
Personally I have found that I cannot second guess any medical person.
What I can do is to write down all my fears, symptoms, questions and practicalities so I am organised for my next appointment. I also ask for the answers in English, not medical speak.
I am not a medical person, but I have found that my anxiety does not help my health, symptoms or me. I also find if I do not get my sleep my thinking goes off in all directions.
Please do use us and the Blood Cancer UK support line is there for you on 0808 2080 888
Please do let us know how you get on, I know this might sound nearly impossible, but try and divert your mind.
Be ever so kind to yourself and look after yourself

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I have a different blood cancer to you I have myeloma
My paraprotein is monitored 12 weekly
Through treatment it’s monitored 4 weekly
I have other bloods done for the overall picture of how im responding to treatment

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Thank you for everyone’s replies.
I’ve had my appointment today, my white blood cell is back upto 4 now and he said my BCR ABL (I think that’s what he called it) is at 1% - he said this is good as I’ve been on my treatment for 5 months almost to the day, again brain is mush, boyfriend made notes and assured me it’s positive. I asked about the duplicate BCR test, he said he likes to do them every couple of months just to stay on top of things. My platelets have gone up too apparently they are 213? What does this mean? I have to let me Occupational health know my platelet level due to risks in my job.
I’m sorry I am rambling a lot just feeling super anxious at the moment x

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Hi @CarlaWild from what you say your boyfriend made notes and assured you your appointment was positive.
I didn’t feel you were rambling and I wonder if you might consider seeing your GP about help around your super anxiety, it must be miserable for you.
I reckon that you have a great insight into yourself and that is a brilliant first step.
The Blood Cancer UK support line is also there for you on 0808 2080 888
Be ever so kind to yourself and do lovely things with your boyfriend, he seems very supportive from what you say. Please do keep posting

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Dear @CarlaWild,
I am glad all went well at your appointment, it sounds like it was all very positive! Also well done to boyfriend for making notes so you can recap after - this is so helpful!
I have attached our pages here on normal blood levels - Blood cells | Blood Cancer UK if you scroll down there is a little table which gives you the ranges for a healthy person, if your platelets are 213 this is in that range. Perhaps they were low on your last visit? At your next appointment perhaps you can double check this is what they meant?
If your platelets are low you are more at risk of bruising and bleeding so if you ever notice anything out of the ordinary please do alert your team.
If we can help with anything else please know you can call us on 0808 2080 888 - always very happy to help.
Best Wishes,
Heidi (Support Services Nurse)

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