Hi everyone, I am a 66 year old man and have suffered with polycythaemia vera for the past 7 years. Over the last year my bloods have been up and down and not very stable. Before Christmas it was suggested that I have a bone marrow biopsy and have just received the results. Apparently I have 7% leukaemia cells within my bone marrow. The course of treatment they are suggesting is a month in hospital on aggressive chemotherapy. I was wondering if anyone else has been in a similar situation and can give me their thoughts and/or experiences of this process.Many thanks
George
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Georgehb
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Are you feeling ok? Was your BMB otherwise normal?
In this reference they describe blast levels.
"The percentage of blasts in the bone marrow or blood is particularly important. Having at least 20% blasts in the marrow or blood is generally required for a diagnosis of AML. (In normal bone marrow, the blast count is 5% or less, while the blood usually doesn't contain any blasts.)"
By this 7% in marrow not that much over normal and a very long way from "blast phase" but it's not up to our judgement. Your expert seems to consider it to be a concern which is what matters.
It seems your Dr is going after it early which usually is a good idea. Do you know which chemo they plan? You should feel entitled to ask if not.
Good morning and thank you very much for your reply.I feel relatively ok but the hydroxycarbamide does make me feel fatigued and has a few other side effects.
I'm not sure what you mean by blasts in the bone, because the doctor only explained it as a percentage level of leukaemia cells in my bone marrow.
In relation to the chemotherapy, they haven't actually said what type of chemo it is going to be and I didn't realise that there was more than one type. However I will bear that in mind when I see the consultant in a couple of weeks time and ask.
On the other BMB results, was all normal? This info should be important as you and Dr make decisions. For example your fibrosis level, if any, and cellurality. These are additional things expected from a BMB. For all the discomfort we get with a BMB we want loads of info from it.
Hunter has a good description of leukemia cells. Here is another that notes "blasts":
"When a patient has leukemia, abnormal immature white blood cells (called blasts) multiply uncontrollably, filling up the bone marrow, and preventing production of other cells important for survival, namely red blood cells and platelets"
It seems your Dr is using "leukemia" cells as a word for blasts.
There are countless chemos, even HU is one of them. Likely one is preferred for your case, it's worth knowing what it is. But as Hunter says and you are planning, asking lots of questions is good way.
With Guys on your team you can be comfortable with your ultimate treatment decisions.
Sorry to hear about the apparent progression of the PV. Suggest that you seek a more clear understanding of what your status actually is. Has your diagnosis changed from PV? If so, what is the current diagnosis? Have you entered into blast-phase? This is what EPguy was referring to.
it may be that the reference to "leukemia cells" is as follows.
"In a person with leukemia, for example, the bone marrow makes abnormal white blood cells, called leukemia cells. Unlike normal blood cells, leukemia cells don't die when they should. They may crowd out normal white blood cells, red blood cells and platelets, making it difficult for normal blood cells to do their work."
It sounds like the reference to 7% leukemia cells may be a reference to blast cells. Suggest that you want to be very clear about what the finding was and what it actually means.
It is a very good idea to always get a second opinion on any recommended course of treatment like aggressive chemotherapy. I would never consider any significant course of treatment without a second opinion. MPNs are rare disorders and seeking MPN-expert care is essential. Suggest getting a second opinion specifically from a MPN Specialist would be very important now, Here is a list of MPN expert doctors. mpnforum.com/list-hem./
Wishing you all the best and success in the next stage of your treatment.
Hi, thank you for your reply. I am waiting for a referral to Claire Harrison argus hospital in London, but my haematologist is dragging her feet. I have therefore contacted another recommended specialist at guys and hoping to have a teams meeting next week.
The foot dragging is unfortunate. You really do need a second opinion from a MPN Specialist. Hopefully, the other specialist at Guys is part of the MPN team there.
Hi George, My husband was diagnosed with PV over 10 years ago he was on baby aspirin and venesections for years but he then became iron deficient and was absolutely exhausted . So in 2018 he had a BMB which showed primary fibrosis in his bone marrow.
He was sent to see the transplant team and they agreed he's not in the stages where he needs a bone marrow transplant.
Anyhow he's been on ruxolitnib for about 3 years now and all his bloods are in normal range. He's not suffering exhaustion no more. His spleen has reduced in size .
Is there no there treatment you can try other than chemotherapy?
Might be worth asking about alternative treatments .
My husband was diagnosed at 40 years old he's now 50.
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