Help! I was diagnosed with ET in 2013 and my platelet levels were stable and under 600 during this time and I just took asprin. When I reached 60, after much discussion, I began a low dose of Hydroxy to counteract the increased risk of clotting due to my age. JAK2 was confirmed at diagnosis and at a BM in 2021 before I started on Hydroxy. I have recently moved house and transfered my care. Talking to my new consultant yesterday, he asked for a face to face consultation next week as I have low levels of JAK2. Has anyone else been told this? What does it mean? Is it a good thing or a bad thing? What questions do I need to have ready ahead of the meeting next week?
I am very aware how very lucky I am for my ET to have been stable for so long when I read your stories, I feel ashamed to asked for help. I am very aware how the above may seem very trivial but to be honest it has thrown me a bit. I feel really anxious this morning. I know I will feel better about next week's meeting if I understand what the low levels of JAK2 thing means. You have always been there for me, so very grateful for any information you have .
Thanks again for everything as always, stay safe everyone.
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Cassandra61
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I am unsure why a low level of Jak2 (a good thing) would warrant a call for a face to face meeting. It will be interesting to see.
Your story reflects mine in a way.
Diagnosed with ET 2016, platelets 500, but age 60 was the protocol to begin cytoreductive therapy. I have been on the same low dose of hydrea 1x500 mg Monday to Friday. I recently found out my Jak 2 allele burden was low 3.6!
Thank you SO SO SO much for getting back to me, I haven't slept really worrying about this and just couldn't find any information. It is good to hear that low JAK2 is a good thing.
What does allele burden mean? I guess this is a good thing for you, I hope so. Are you staying on the same dose of hydroxy
I think the meeting might be to discuss the next steps/ treatment plan/ why forward thing, hence I want to be as prepared as possible.
Thanks so much for finding the time to reply, my very best wishes for your good health.
Allele burden is what your haematologist is referring to when he says your Jak2 is low. Allele burden or percentage of the mutated Jak 2 (the bad guys) is low, hence the remaining percentage is normal. A good thing!
Thanks so much for this reply, I can not tell you how much you have set my mind at rest. I have been up all night worrying about what it might mean and finding no useful information on the internet written in a language I could understand. I will find out what my allele burden is next week and then be able to understand what the consultant is suggesting. I can not say how grateful I am for your time and explanation. Stay safe 😁
I wonder (pure speculation) if your new consultant is being vigilant and reviewing your cytoreductive therapy. You say, your platelets were low and your disease stable, and now you have been told you have a low allele burden. These are all good signs!
I note whilst taking hydrea you also had quite a low wbc at one stage. Trade offs like this have to be taken into account too.
Age 60 used to be the age criteria in combination with the Jak2 mutation for cytoreductive therapy - or a history of cardiovascular disease. I believe many specialists now view 65 as the new age criteria.
I must say, I wasn’t particularly happy starting hydrea at age 60, but I listened to the medical evidence put forward at the time. It’s probably a good thing for me though as my haematocrit was borderline too. Low dose hydrea has brought my platelets and haematocrit into normal range. I remain on the same dose for the last six years!
I will be interested to hear the outcome of your appointment.
Thank you so much for your reply. I wonder if you are right about the new consultant doing a review as I have always been a bit 'borderline' and we debated long and hard as to whether I should start cytoreductive therapy or just continue monitoring. I feel properly armed with the right language and information to make an informed decision about what happens next. I will post about what happens.
I am so lucky to be able to turn to this group; thank you so much for your time, expertise and reassurance. Stay well and look after yourself
ALWAYS best to ask questions... You have every right so please do not ever feel your questions are somehow invalid... ok? All of us are at varying stages of having our MPNs, but we all have them just the same...
Hard to know precisely what the 'New Con's' meant by saying that "you have low levels of JAK2" Does the 'Con's' mean that they have been reduced, or simply that they are low?
There is a measure that is applied to all our "Driver & High Risk Mutations" called an "Allele Burden – AB". The AB simply determines how much of the mutated gene is present in our bloods etc...
The new con's might simply be commenting that your JAK2 AB is quite a low level. Is that a good thing or a bad thing? Well, in very simple terms if there was NO, JAK2 AB, that might mean you are now cured... :-))
As it is the presence of those "Driver" Mutations, (JAK2, MPL & CALR), that help to diagnose that we have an MPN at all...
Best just ask exactly what they meant by the comment, "you have low levels of JAK2"
Let us all know what the 'con's' answer is at some point so we can discover the mystery behind the statement etc...
Morning, Thank you so much for replying to me, TBH I have had a sleepless night over this.
Thanks so much, I do feel really bad asking for help when other people are so obviously very unwell, but you are right, we all benefit from the sharing of information.
I don't know what my allele burden is , so that is a place to start with the consultant next week, then I guess we'll see where we go next. I will post following the meeting. Thanks again so so much, have a good day and stay safe 😁
I didn't know about this either, so it's now a question in my book for my meeting mid July. Thank you for raising it. We are able to glean so much from this site. I have Et Jak 2 and been on hydroxy 2 years. Hope all goes well.
If one has the JAK2 mutation, and their Alelle Burden (AB), which is the amount of the mutated JAK2 in one's blood, was to disappear completely, it may mean that they have experienced a Molecular Reversal (MR), which in turn might mean that they are in fact cured...
There are those who have undergone Allogenic Stem Cell Transplants (ASCT) successfully, and who no longer have any presence of the JAK2 mutation...
Right, I will post when I get back from the appointment. I am so grateful to our glorious NHS for keeping an eye on me in the midst of being treated so poorly and for being able to understand this rare and confusing condition. I am taking biscuits for the nurses 😁 Thank you everyone for all your replies.
According to experts even such as Dr Silver states that even when people have low to zero Jak2 there can be still plenty MPN in the bone marrow biopsy. So low zero Jak2 is not a cure. In fact to date there is no cure outside a Stem cell transplant which is very different.
I think you are right from what I have read. Many people have JAK2 with ET but some don't. I'll post any insights I get next week. Thanks loads to everyone. Stay safe and well and thanks again.
Never hesitate in reaching out to us. We are all here to help each other. Low jak2 sounds like a good thing to me. Please keep us posted on how you get on.
I feel really grateful to be connected to such a kind, knowledgeable community. Thank you so so much for replying to me, as I said I have been up all night worrying about this. What you say makes sense and I will definitely post after next week's meeting. I do feel much less anxious and much more to face the meeting with some of stuff I need to know. Thank you so much xxx
As others have indicted, less is better when it comes to JAK2 allele burden (Variant Allele Frequency - VAF) . The short version is that only a certain % of your hemopoietic stem cells carry the JAK2 mutation. The rest are wild-type (normal). People with ET tend to have the lowest VAF, people with MF the highest, people with PV somewhere in the middle. Symptom burden tends to be associated with VAF, but note the emphasis on tends. There is not a linear correlation. It is more complex than that.
Hydroxy is one of the first-line treatment options for treating ET age > 60. Not all docs initiate cytoreduction at age 60. Some use age 65. Some do not use age as a criteria, individualizing the treatment plan based on the patient profile. It may be that your new doc wants to review your care plan and ensure that your plan is optimal. Note that some docs favor the use of Pegasys, another treatment option, over hydroxy.
Here is some information about VAF and the underlying molecular biology of MPNs that you may find useful
Thank you so much. I always read your replies to any questions as they are so knowledgeable and well researched and supported. Thanks to your answer and everything that everyone else has said, I feel much calmer and able to move forward. I will post after next week's appointment in an attempt to add to the sum knowledge of our community. Thanks again, look after yourself and stay safe 😁
as others have said , try not to worry about it, I suspect when you have the consult you will realise it’s nothing to be concerned about, often docs have to see you in person just to tick boxes. You’ve had Jak2 at diagnosis and it’s still low, great news, there is no reason to call you in to discuss that , ie nothing new and likely good it’s lower, there may have been a bit of a misunderstanding. Most of us on here are Jak2 positive. If I could change one thing about my time with MPN in the earlier days is I wish I didn’t waste valuable time worrying about stuff unnecessarily. Try to relax and wait to hear what your doc has to say, of course post on here how it went if that suits you.
Thank so much for your reply and for your sound advice, I will remind myself of what you say next time I feel anxious. I feel honestly feel so lucky to be part of this community. I was in full panic mode at 4.30 am and I had full, detailed, and kind replies from the community within a couple of hours. As, so far 🤞, my ET has not really got in my way, I always felt ashamed of taking up attention that other people need so much more than me. Now I realise that everyone benefits from the sharing of information so I will do this more often. Thank you so much.
I suspect most of us have been in panic mode from time to time, best try to avoid though if poss.
dont feel ashamed to take up attention as you put it, some on here are more or less fortunate but everyone is important so we look forward to hearing how it goes 😀
I used to be a worrier about everything too! Then I decided that the stress from worrying would be my demise, not my ET. Worrying does not help or solve anything. When I start worrying, I take 10 deep breaths, hold each one for 8 seconds, and slowly exhale through my mouth. This works so well for me. Try it!
Hiya, that is so kind of you to check in, thank you so much. I am going to post an update in a minute in case it helps anyone else. It has taken me a few days to get my head round all of this though, I won't underestimate next time the impact of the emotional drain on us all. Thanks again for your kindness and stay well.
hi , just because your platelets are lower than some doesn’t make you worry any less , mine are low too but I used to worry , I also have Jak 2 and don’t understand what it means , I find the whole ET and Jak 2 complicated , all the medical terms , hope you ok and everyone has reassured you , I’ve chose not to take any medication just yet
Thanks so much for your reply, I totally agree. I went on the medication as a result of my age and on the advice of my consultant of the time . I shall be interested to see what the new consultant says .
Just a thought.... Have you gone on the MP VOICE website, you probably have but I found their guide to ET really useful and the glossary as well. Thanks for your reply, look after yourself.
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