Essential Thrombocythemia (ET)

Hi Everyone,

I’m a new user looking for some advice - I have recently discovered my blood platelets are raised and looking back at my medical records I can see that they have been above range for nearly 15 years. Results seem to fluctuate but they are normally between 500 to 600. I was referred to a hematologist who didn’t seem concerned due to my age (under 40) but had my blood tested for Jak2 (and the other mutations) which has come back clear. The consultant advised, due to this I DO NOT have ET, but just a raised platelet count? After researching this I have seen that any continuous result above 400 is considered ET and 50% of people diagnosed with ET have Jak2 negative results anyway.

I am having regular blood tests and can see the platelets are always high and above normal. As I pushed the consultant, he reluctantly suggested a Bone Marrow Biopsy, however kept asking me if I was sure, as the procedure is quite invasive. I have yet to decide, however would like to know if anyone else has come across the following:

  • Is Jak2 negative but has still been diagnosed with ET at a platelet count of 500-600?

  • Had Jak2 negative blood test results, but positive on a bone marrow biopsy?

Also can anyone describe their experience having a Bone Marrow Biopsy, I have read this can be very painful and can lead to problems later in life due to the excision.

Any advise or past experiences would be greatly appreciated. Thank you.

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Hi, a great big welcome to our community forum and your post is very opportune as we have just entered Blood Cancer Awareness Month and one of the main issues Bloodwise are highlighting is for the medical profession to have blood cancers on their minds when presented with a complex, special, unique patient with a set of symptoms. I cannot answer your medical question, others might have views and experiences, but we are all here to support you and often share the similar fears, thoughts and feelings. The Bloodwise support line is free from UK landlines and mobile phones on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm, but you can get in touch whenever you want and leave a message and they say they will get back to you within one working day. Please let us know how you get on and take care.

Hi Blue_Box,
Thanks for posting here and hope you will find support in this group.
I don’t know anything about ET and Jak2 I’m afraid but I have had several bone marrow biopsies , so I imagine it’s the same sort of procedure. I think the pain varies greatly from one person to another. Also in one type of BMB they just take the ‘fluid’ part, in the other type they have to take a section of the bone - I think the technical names are bone marrow aspiration and trephine biopsy - and the one with the bone was always more painful for me.
I’d ask for any pain relief they offer (some hospitals offer sedation, some gas and air etc)
I’m not sure about longer term issues, the initial pain settled in a few days for me (I’d take pain-killers too).
Hope that helps and hope it’s okay for you if/when you have it.

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Hi, Blue Box and welcome to our Bloodwise community. Like the previous reply, I do not know anything of Jak2; but I have experienced a bone marrow biopsy.
As previous reply says, I think it varies from hospital to hospital, where some offer sedation and others not do much. When I had mine, seven years ago, I was told the pain relief would only be ‘as far as the bone’; I can confirm this to be true ( in my case). I found it to be extremely painful and indeed at the end of the procedure I did ask where the baby was ( as I could only liken it to childbirth, without any pain relief). What I would say is that if you can avoid it - so so. I did not suffer any after effects, and just took painkillers for a day or two. Nothing serious. Good luck in your decision making, and hope the outcome for you is good.

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Thanks for taking the time to respond, your comments have been helpful. I am going to contact the hospital to see what they can offer, as I will likely be having the procedure. Thanks again.

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Thanks for your response, I’m likely going to proceed with the procedure, as don’t like the thought of not knowing. Im going to contact the hospital to see if they offer sedation or gas and air. Thanks for taking the time to comment.

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I can tell you about bone marrow biopsies. I’ve had over 20 in the past so I am quite an expert! I won’t lie, they are not nice to have, but it’s not horrific. It only lasts about 15 minutes or so as well so it’s all over quite quickly.
You will lie on one side with your knees tucked up and you will be given an injection of local anaesthetic in your hip at the back. They’ll give it a few minutes to take affect and will then test the area. If you can feel anything at all, then tell them and they will give you some more anaesthetic. Many hospitals offer gas and air now, but if it’s not offered then do ask for it, it does help. Again, while they are taking the samples, if you feel any pain then do tell them. It shouldn’t hurt but you will feel an odd tugging sensation. It’s all over very quickly too.
I never heard about long term problems caused by biopsies either. I was told it would completely heal in time. As I say, I’ve had well over 20 since 2014 and I don’t have any problems with my hips.
Best of luck, Jane

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Hello and welcome to our forum.
I agree with everyone else’s comments about the biopsys… I’ve had several and there are worse things. I just wanted to add that if this will clarify your situation once and for all perhaps its worth it and I always found the clinicians doing the procedure really caring and aware of your comfort. If you don’t then you may never be sure of what is going on. I think you are right to challenge your consultant if his decisions don’t reassure you. bw Anna

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Hello @Blue_Box - I just wanted to ask how you are, and whether you did end up having a bone marrow biopsy? I hope it went smoothly, and that some of the tips and experiences here were helpful to read ahead of it? I hope that you’re doing okay!

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