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.
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.
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.
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.
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.
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.
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
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
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!
Hi @Blue_Box and everyone,
I’m a new user and came across this page today. I’m looking for anyone who might know a little bit about Triple negative ET.
I hope you don’t mind me asking how you got on as you posted a year ago.
I’m in the same boat. I saw a haematologist 3 years ago because of 15 years with continues high platelets between 500-630, they tested me and i’m triple negative for the 3 mutations they look for (Jak2 etc).
I was told at the time to do regular blood tests every 6 months and if the levels come back of 650 for 3 months they would do a bone marrow biopsy.
I found out recently this was totally the wrong advice and should have had a BMB done back then. Thankfully it was done in June this year but I’m still waiting for the results. But from one phone call appointment i’ve had they said it’s looking likely to be Triple Negative ET but some of the tests take a long time to come back.
It also looks like its familiar (me being case zero as my mum and dad have no issues with there platelets) all my kids having high platelets on there blood test.
My appointment is in October for the results and i’ve also been referred to a professor at Oxford John Radcilfe.
If anyone has any advice or experience in this be gratefully received as i’ve not been able to talk to anyone who understand any of this! Thank you.
Welcome to the forum @Terri. It must be a worrying time while you are waiting for your appointment. I’m afraid I cannot help with specifics, but you may find information on the Blood cancer UK website, or the support line may be able to help you with any queries you have. The team are there on 0808 2080 888 from 10am-7pm on Mondays -Fridays and 10am -1pm Saturdays and Sundays.
I hope you find other topics of interest on the forum, and that you will let us know how you go on. We are always here for a chat. Best wishes
Hi, @Terri, a warm welcome to our community forum and I am glad you came across this page today.
I have never had a BMB and I was diagnosed with another blood cancer 16 years ago, I don’t believe they were carried out routinely then. Diagnosis and treatment regimes have come on by leaps and bounds in those years.
Doesn’t it take ages for results and appointments to come through during Covid. The waiting is the worst, isn’t it.
I also have no know cases of blood cancers in my family.
It sounds as if you have been referred to a specialist hospital.
Please keep posting how you are and how have you been during lockdown?
Hi Terri sorry you have had a rough time of late and are waiting for your BMB results as it’s not easy waiting - the results on the more finite elements do take some time and I am glad you have been referred on to Oxford too as with MPNs it is essential to deal with a consultant who has MPN as a speciality, as due to its rareness you really need the care of someone who has the experience of them. I have ET and am triple negative - within the realms of ET it’s not unusual to be triple neg, we are a certain percentage of ET patients that don’t fall under the three main mutations that are tested for - it is thought likely that we have further mutation that is yet to be discovered - and being triple neg is no better or worse than those found to have one of the mutation patterns - the ET itself is the same, the treatments are the same. Some of the finite testing that is done via the BMB and bloods also map out well many elements of your personal disease (and tend to be the results that take weeks to come through) so as long as you are under a MPN specialist you will get the right help in due course. I was diagnosed over 14 years ago in my mid 40s and have had BMB at diagnosis and again in recent years. I actually first had bone marrow problems in 1977 at 17 years old and know now that I had ET symptoms then and all through my younger years on and off, unfortunately never picked up in its early stages. You will find much benefit by logging on to the website for MPN Voice which is the charity that deals directly with our blood cancers, there is also an MPN Voice forum run via the Health Unlocked website - both will enable you to get much information in respect of ET and touch base with other MPN patients. All the best
Hi @Jilly20 Thank you so much for taking the time to tell me all this! My Daughters 15 and my Twins our 11. I’ve been more worried about what this all means for them!
I will defiantly have a look at the websites you’ve suggested. It’s all very confusing for me at the moment.
I’ll come back with my results at the end of October.
Thank you again !
Hi @Terri, Have you been talking to your children about your diagnosis, what it means and what is going on for you?
Hi @Erica I will do once i’ve had my appointment in October when i understand more about it.
Hi @Terri and welcome. The Impact of my diagnosis on my children is always at the forefront of my mind. Its really tough isn’t it! How have you been?