I have the Philadelphia chromosome. I have platelets over 4,000 and acquired Von Willebrand desiease. I have had bonemarrow aspiration but no results yet. Just wondering if others have this presentation of CML?
#CML #recent-diagnosis #platelets #chronic_myeloid_Leukaemia
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Hi @Rebecca_Guyver,
Thank you so much for taking the time to share this and a warm welcome to our community. I was just wondering how you’re doing since your diagnosis? It sounds as though it’s all quite recent for you and that can sometimes be a lot to take in. If you need a bit of support or would like to talk things through with someone, our Support Team are here for you on 0808 2080 888 or support@bloodcancer.org.uk.
I thought I’d share a few resources just in case they’re useful for you at this time:
I’ve just been told I have blood cancer | Blood Cancer UK
Chronic myeloid leukaemia (CML) | Blood Cancer UK
Chronic myeloid leukaemia (CML) booklet | Blood Cancer UK Shop
May I ask, Rebecca, whether you have any follow-up scheduled? Do you have a Clinical Nurse Specialist contact (CNS) allocated to you? Have they talked you through your high platelet count and the cause of it?
We are here for you if you need any support at all. Take good care of yourself.
Best wishes,
Tanya.
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Hi I have seen the consultant and am on Imatinib. Weekly follow up blood tests.I feel well. I am optimistic but finding other people with my variation would help.
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Hi @Rebecca_Guyver snd welcome to the forum.
I can see Tanya has provided you with lots of information which is great!
The forum is a great place to share with others and connecting with those who have a similar diagnosis is invaluable!
How are you doing at the moment?
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Hi @Rebecca_Guyver and a great big welcome to our forum, I am so glad that you have found us and posted.
I hope someone will be able to help with their experiences.
Something did really strike a chord with me as I remember being diagnosed and suddenly I entered this world that spoke this new medial jargon that I did not understand.
If you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
I find on our forum it often seems that it does not matter what our diagnosis is but many of us share the same thoughts, feelings, questions and practicalities.
I really look forward to hearing more about you so please keep posting.
The most important thing is that you after yourself
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Hi Erica, really appreciate your reply and great to find a group, although I see it isn’t that active… I guess being more rare might explain it. I did some research over the weekend about my platelet diagnosis and uncovered a meta analysis about other CML sufferers with high platelets rather than WBC. I was astounded to read that they only identified 20 individuals between 2000-2020 in all the English language research worldwide. So, I am pretty rare. I was afraid to read the findings, but luckily our son is a Doctor and he happened to be home so he read them, confirming that of the 17 with data 16 we’re still alive and only one had progressed to blast phase once treated with Imatinib. So am calmer.
I have a good team around me locally, feel relaxed and quite well. I have only been taking the Imatinib for four days so far, so hoping my lack of side effects continues! I walked for 40 mins today. Tried a bit of running yesterday but got some of my original symptoms back so can’t be entirely normal yet… I am 62 years old and hoping to be as active and healthy as I have always been. Thanks again!
Rebecca
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Hi @Rebecca_Guyver, just wanted to send you these two links to other threads also started by people newly diagnosed with CML, just in case it’s helpful -
Just been diagnosed with cml - Recent diagnosis - Blood Cancer UK Forum
Just Diagnosed with CML - Recent diagnosis - Blood Cancer UK Forum
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Hi
Also diagnosed with CML and it was my high platelet count that actually showed up as part of testing blood as part of giving blood that started me on the path to diagnosis. Mine were nowhere near as high as yours, ~900 at diagnosis and 1300 by the time I started on Dasatinib which is another TKI like Imatinib. I did also have elevated WBC but not hugely and I’m nearly 4 months into treatment now and my blood counts are already back to normal levels. I think Imatinib is a touch slower acting and your starting from a higher level but with any luck you will quickly feel much better as your counts get back to normal.
My consultant did say he presumed I had ET rather than CML when presented with the blood counts and that it was relatively rare for high platelets to be the presentation of CML.
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Wow! Thanks. They must have caught you earlier. Do you have the Philadelphia chromosome? And how old are you? I feel fine in the Imatinib but they haven’t been able to count my platelets in three weeks because I guess they sludge together. I got back results from a blood test and unfortunately my neutrophils are v low now, my WBC are low and my haemoglobin is a little low… Not sure if the treatment will change. Anyway, thanks for letting me know!
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Hi
Yes caught very early, I’m 37 and do have the Philadelphia Chromosome so BCR-ABL positive which I think most people with CML have. From what I have read TKIs can cause low counts at times so they may not change anything straight away, your consultant will know the best course of action if any is required though.
Hopefully things are heading in the right direction for you though, its very early days but I would think low counts means there is a response to the treatment which is probably a good sign.
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Thanks Andy P! I got another call from my specialist nurse. They found another way to count my platelets and they are 2380 now, which is a result! And they are putting me on an antibiotic. I trust them implicitly.
Our son is doctor who did a haematology rotation not too long ago and he’s a great support. I am optimistic and delighted to have found another almost misdiagnosed CML sufferer who had too many platelets. Although at 37, I wish you didn’t have that dratted Philadelphia chromosome!
Take care.
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Hi Rebecca_Guyver,
I have CML. Mine was advanced when discovered and overnight moved into the blast phase but I do not remember or have recorded the numbers. I can see they warranted double exclamation marks and being circled so I probably am glad I do not know. It was Philadelphia ( which I always feel should be sung when I hear it- silly I know!)
Low neutrophils are what happens when the treatment commences. Mine dropped to 1.1. My top score in the six years has been 2.0 but then my consultant spoilt it by telling me she could see it had reached that lofty height because I had been unwell, probably with a virus. I am at present at 1.6 but have been unwell for several months after another medication upset my chemo ( Imatinib). 1.9
Is a common score for me. It does make me take more care when around people.
My friend who was diagnosed in the early stages of CML has a neutrophil count of 4.5. As you can see we are all individuals and our response to chemo can vary.
Low white cells are how the chemo can work. I was told that by lowering them with Hydroxycarbamide that when the Imatinib is started it is easier to eliminate the Philadelphia mutants. ( Again another silly image in my head!) These are of course super simplified images and explanations and I have discovered that blood is endlessly complicated- who knew eh? My initial idea of plasma, red cells and white cells was nothing like the reality of all that is going on in our blood. I recently had a blood test which reported my red cells as being too see through when light was shone through them. Who would ever have known that was a thing!!!
I am a similar age to you and have regained my fitness with the knowledge that I do have to rest more after it. Every now and then fatigue does strike but sometimes I am being told they can see I have had a virus, which I was not aware of at the time. It seems to me that every phial of blood tells a story and the experts are excellent at telling us that story.
I was told that I had a rare leukaemia but that it was a’good one’ because it had been treated for decades successfully. I was also told that the understanding if how and why the treatment worked was increasing in more recent years.
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