Hi all, I was diagnosed with ET JAK2 on Tuesday 22nd Oct and have spent the last two days reading everything I can on the subject.
when I was told I was in shock as I never thought I’d get ill. The haematologist never called it cancer, she said it was a mutation. I was then handed leaflets with the word cancer all over them . I think I’m just scared as I’m 48, live on my own and don’t really know what the future holds.
I have found it really helpful reading all of your stories so thank you. I am on low dosage aspirin 75mg for now. I just worry about every ache in my body that it’s a blood clot . Sorry to bring all my worries here, I just wondered if anyone else felt like this initially and if the mental part of it gets better?
thanks in advance
Lorri
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Pink1831
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Hi Lorri, welcome to our forum. We all completely understand how you are feeling at the moment, It can be very daunting when you are newly diagnosed with ET, there is such a lot to understand. I hope that the information on our website is helping you, there is lots of information on there about ET, the different medications used to treat it, ways to cope with symptoms and lots more. mpnvoice.org.uk
It might help you to have a buddy to talk to, a buddy is someone who has the same MPN as you and takes the same medication, and can give you support and advice from the perspective of someone who really understands what it is like to live with ET on a daily basis. Contact is by email, phone or a combination of both, whichever suits you and the buddy, and how often you contact each other can be sorted out between you, some people find that they feel better after speaking/emailing with their buddy a couple of times, others need more contact, it is all up to you and how you are feeling, if you feel you would like to have a buddy then please let me know and I can send you the buddy guidelines which set out the boundaries of how a buddy can help and support you, and also a request a buddy form. You can email me at buddies@mpnvoice.org.uk
We also have a series of relaxation podcasts you can download, these were produced for people with MPNs by Paul who is a psychologist and hypnotherapist and is also a MPN patient himself, diagnosed with MF. mpnvoice.org.uk/coronavirus...
Our in-person patients’ forums are a great way to meet other people with MPNs, to share experiences, and to hear the latest news from the haematologists and specialist nurses who attend to give talks about the latest trials/studies; new medications; ways to manage symptoms, we also have talks from patients who share their MPN journey.
We also hold online forums throughout the year, with each one focussing on a specific topic, i.e. ET; PV; MF; young people with MPNs; stem cell transplants; MPNs and the menopause. Live streaming the online forums enables our global MPN Voice community to 'attend' the forums. All the online forums are recorded are available to view on-demand on our YouTube channel youtube.com/channel/UC-S_Ic...
We hold in-person forums in various locations around the UK and Ireland every year, details for in-person and online forums in 2024 will be sent out in a mailshot, posted on our social media channels and on our website mpnvoice.org.uk/get-involve...
Maz has said it all so well - but just wanted to chip in and say yes, you are definitely not alone in how you are feeling and yes the mental part can, and usually does, get better. This forum has really helped me get up to speed and get things into perspective since my own (PV) diagnosis in May.
Hi, thanks so much for your reply. I’m still trying to get my head around it all and some things I have read regarding other people’s experiences are quite scary. Maybe I’m reading too much. I guess this disorder affects us all differently.
It is a shock to find out that you have a "blood cancer" and takes some time to process what this means. It is important to understand that ET is a chronic condition, not an acute illness. Many of us look at it as cancer with a little "c" not cancer with a big "C". ET is a bit like diabetes in that it is a condition that can be managed for a long time. Most people with ET will live a normal lifespan if it is properly managed. It is a truism that you are more likely to die with ET than from it.
None of this means that one should not pay attention to ET and its management. That is critical to managing it successfully. It is important to understand that there is more to managing ET than reducing risk of thrombosis. The higher you platelets go, the higher the risk of hemorrhage. Oddly, while there is not a linear increase in risk of thrombosis with higher platelet levels, there is an increased risk of hemorrhage. Another very important factor in managing ET relates to constitutional or secondary symptoms. The JAK2 mutation does more than make too many blood cells. The overactivation of the JAK-STAT pathway also produces too many inflammatory cytokines. This is thought to cause many of the symptoms we experience such as fatigue, insomnia, pruritis and more. Managing systemic inflammation is an important part of managing a MPN. Note that systemic inflammation can cause a variety of aches and pains.
I was diagnosed with ET in my 30s, over 30 years ago. It progressed to PV about 11 years ago. I have lived a good life while managing the MPN and at age 69 continue to do so. My current treatment plan using Besremi, an interferon. has been very effective. I feel better now than I did 10 years ago.
It is very important to consult with a MPN Specialist regarding your care. ET is a rare disorder and most doctors, including hematologists, have little experience with them. Here is a list mpnforum.com/tsr-the-list/ .
As you gather information, you will quickly learn that the protocol for someone who is low-risk ET (age < 60, no history thrombosis/hemorrhage) is aspirin + monitor. There are good sources of information, including what Mazcd provided. Here are some additional useful sources.
Thank you so much for sharing your knowledge and your own experience of having an MPN. I shall definitely look at the links provided.
I think just now every ache I feel I worry is a blood clot, but I have to trust in the haematologist telling me I only need aspirin just now. My platelets are in the 600s.
So grateful to have all of you lovely people on this platform for support and advice. Thanks again
HiPink 1831I think what Hunter5582 wrote should be read by all of us on this Forum. It makes so much sense (read it again!)
I was diagnosed just over a year ago - the initial shock is almost "paralizing" (mind and then body).
Then later (like you describe your own), you go into a "mindset-mode" (no idea if this wording make sense?) but it is when you start feeling/experiencing the so-called "cancer" in every cough, stomach ache, muscle ache, bone pain......, you name is. It can be terrifying and take over your daily life.
I was also there - but over time and better knowledge, you slowly start seeing the "desease" for what it is.
You will able to control it with help from you dr's. It's not that difficult. Once you understand and manage it - you will experience a total "mind altering effect" and it will be lot less stress and worrying. You will be ok.
The "idea" of the illness and the roll the mind can play, can cause havoc with your daily life. Don't allow them!
Hunter, how I wish YOU had been the doctor who broke the news to me and had explained this "disorder" as you have done so here. Part of managing this (or any other) disorder, is to manage stress - difficult to do when the news of "C" is dropped in your lap and then you're sent home with a prescription for chemotherapy. I was most fortunate that my online digging-for-answers brought me to this forum. God bless you for your insight and compassionate sharing. Six years since diagnosed and I've learned to take this disease as a challenge and not a curse - thanks to folks like you. May you you continue to have a happy, healthy and long life.
Hi, thanks for your message. My haematologist seems informed and very sensitive the twice I have met her. I am looking into requesting a MPN specialist too. I just want to be totally informed and look after myself the best way possible.
I told my sister I had a blood condition and I feel more comfortable thinking of it like that. I guess we all have to do what works best for us .
Thanks again for messaging and wish you and everyone else on this forum the best moving forward.
Hello Lorri,I was 48 when I was diagnosed with ET as well. Like you, I wasn't told it was cancer. It was my other half who said it was blood cancer and the doctor confirmed that it was. I asked them why they didn't just say it, but I suppose they are trying to be tactful. I am 54 now and was stable all this time. I am getting high Iron levels in my blood now and high blood pressure. I am on 1000mg Hydroxy Monday to Friday and 500mg at weekends. I am on 75mg Aspirin daily. I have had my 2.5mg Ramipril increased to 5mg daily, but my blood pressure is still high. I am going for extra blood tests today to test liver and kidney function. The high Iron levels are either a damaged liver or Haemochromotosis. My mother has the gene, so I expect the latter. I might have two rare chronic conditions, ET and Haemochromotosis. Haemochromotosis is hereditary. They are not sure what causes ET, but I expect that is hereditary as well. Let's see what the results have in store. Its like playing Russian Roulette. I wish I could be more positive, but that's my reality.
Thanks for your reply and for sharing what’s your reality just now. I truly wish you the best . My father has dormant leukaemia, I’m not sure of the details as we don’t speak and haven’t since I was a child, but I do agree it’s possibly hereditary. Although my haematologist said it wasn’t.
I had my blood tests today. I will have one result on Tuesday when I have a telephone appointment with my Haemotologost, and the other on 11th November when I have an appointment with my GP (probably a nurse again) for my blood pressure. I will let you know the outcome.
I am glad to say I have the all clear for Haemochromotosis. Its strange to say I am glad I just have ET to contend with. Two chronic conditions would have been too much. It just goes to show you, it could always be worse. I can breathe a sigh of relief.
Thanks so much for your reply and for your advice. Now that I know more about ET and the symptoms I feel like I have a few of them! Not sure if it’s psycho somatic ( is that what they call it!)
I’m trying not to read too much as the prospect of getting AML terrifies me, although the haematologist said this was rare.
I think the shock & surprise of being diagnosed with an MPN is something that we’ve all go experienced on this forum & is a perfectly normal reaction.
Once you’ve started to research your condition it will help reassure you that although it is a blood cancer, it’s not as scary & overwhelming as when you were initially told.
This forum had been so helpful, friendly with lots of advice based on everyone’s experiences.
Thanks for your message. It’s still early days for me and I still feel pretty overwhelmed if I’m honest. My head keeps going to worst case scenario.. I’m sure in time I’ll think more rationally.
This is a great forum, very informative and full of lovely people who although are going through their own stuff take the time to inform and reassure others .
I think just about everyone here felt exactly the same when they got their diagnosis. It takes a while to sink in.
I was 49 when I had a blood test done for a variety of wierd symptoms. Thankfully my gp also tested vitamins and thyroid to exclude these. However for me those have changed my life because I was officially deficient in vit D and vit B12 was towards the low end. This got me interested in all things to do with vitamins, read that even with ‘in range’ low B12 you can have a lot of symptoms, so although all the Drs ignored this one I treated myself with high dose sublingual B12. The change was hugely significant and life changing . I’ve also tweaked my thyroid too, all for the better . Take a good look at your diet too.
I do hope your Dr checked all these simple to fix things as well? If not, do request them. Even if they are all fine, it’s handy having a starting point to note any future changes.
Keep reading about ET. I find pubmed helpful and drugs.com for any medication offered. I look at the professional version so you have the same info as your Dr.
Keep asking questions on here. Best way to learn. Xx
Thanks so much for your message. I actually had a chat with the CNS about vitamins as I was on iron/ multivitamins, B12, magnesium and Vit D. She told me to stop the iron / multi and the B12 as they feed the bone marrow or something like that.
I am having a full blood count on Monday to include all vitamins.
I’ll definitely have a look at pubmed. Thanks for all of your advice.
I’m sorry to say but the advice you have been given, whilst well meaning, is just plain wrong.
If you have been supplementing with B12, the guidelines state you should not be tested. You would need many, many months to pass before a test . Levels can look good and give a false sense of security. This is because up to 90%+ of your serum B12 can be a B12 analogue that your cells can’t use. Folate, b12 and iron all work together for healthy red blood cells. B12 is essential for healthy nerve and brain function ands deficiency can mimic many other conditions, including Parkinsons MS and dementia. It’s extremely safe even in high doses .
Drs and nurses or any medical professional are not taught about vitamins at college. If they are lucky, they might get ½ a day on all vits and minerals in their entire training, so you really need to do your own homework in this area. Frustrating but that’s the way it is.
Be interesting to get the test done anyway, to see what direction things are going in, but whether their interpretation is accurate is questionable.
Thanks very much for all the information.. I think I’ll stop it for now and see what happens with the various blood tests I’m sure I’ll have in the next year.
I wouldn’t know where to start knowing what vitamins to take with this condition???
Our friend Amethist is on the right track with her comment. It is important to understand both the role of nutrition and supplements as well as how MPNs actually work. As Amethist pointed out, iron and the B-complex vitamins are primarily used to produce RBCs. The nutrients have some, but less, impact on PLT production.
It is worth noting that iron deficiency can mask PV, making it appear to be ET. Masked PV is a known issue that would need to be addressed if it was evident.
Equating taking nutrients with "feeding the marrow" as though it was "feeding the fire" is a gross oversimplification. When we have MPNs, our bodies still need an adequate supply of nutrients to function properly. If we are deficient in any vitamins, it can cause significant health issues, including neurological, skeletal and other issues. While there are times that nutritional supplements may be contraindicated, particularly iron for people with PV, there is no across the board statement that applies to all people with MPNs.
I have a measured deficiencies in Vit D, Vit B/folate, and magnesium. I take supplements for each of these deficiencies under the supervision of an Integrative medicine doctor and with the support of my MPN care team. The supplements are titrated to meet my measured need. I do not think it prudent to take supplements in the absence of measured need. At best, it is a waste of money. At worst, anything biologically active enough to help you can also hurt you and interact with things.
It is best to consult with a knowledgeable medical provider regarding the use of supplements. This is not all medical providers. Integrative and Functional Medicine doctors are much more knowledgeable about supplements and nutrition. There are other providers who also develop this knowledge base. It is a topic of concern in MPNs, so you will find some MPN Specialists who also have this expertise as it relates to MPNs.
Thanks Hunter, very informative and helpful.. I will start to look into an Integrative and Functional medicine doctor as hopefully there will be a few based here in London where I live.
Thanks again for taking the time to reply in such an informative way.
Totally understand. This is all new and so much to take in 😵💫
If, in the future , you’d be interested in some book recommendations on vitamins , what constitutes a healthy diet etc, happy to give you some recommendations.
But in the meantime, relax, focus on enjoying all the good things around you and don’t worry. 😁
I really appreciate yours and everyone else’s advice. I want to do the best I can for my health so the book recommendations are very warmly welcomed.. I’m sure there’s others on here who would be grateful for this aswell as me ..
I think these 2 would be a good starting place. They are not about ET or MPN but more on general health , what a nutritious diet really is and B12 of course .
You were already on B12, which suggests you perhaps had a particular reason to do so? Many people haven’t even heard of it. The book by Sally Pacholok is brilliant and after you have read it, you’ll appreciate how little the average Dr, including the average haematologist, know, to the detriment of their patients.
The title is “Could it be B12? “ 2nd edition.
The second book I highly recommend is “Deep Nutrition” by Catherine Shanahan MD
She covers a lot of important areas where science and knowledge have moved on even if the Drs haven’t .
They have both been out for some time, so you might be able to get them cheaper second hand .
Hi, this is fab, thank you. I’ll definitely get them. I have just ordered the MPN cookbook on Amazon..
I was on B12 as at my age, 48, a few friends are on it and said it really helped them. I’m off it currently, but am in the process of finding a medical herbalist to help.
Firstly, welcome to the forum, the more you'll find out, hopefully you'll be more in charge on how you feel. Just be sure we all here to talk.I'm a Feb 24 ET and thought I was going in for a routine blood test and got called in to see the haematologist. I have since learned so much from the forum. I never thought I would be re-educated at 70!
Like everyone else has said welcome to the forum and I echo everything that's been said.
A few additional comments:
- I think the emotional impact of being given the diagnosis especially if you are given mixed messages ('mutation' vs 'cancer') can be very unsettling and scary. Even the phrase "blood cancer" can conjure up very worrying thoughts and feelings. I can relate to this when I think back to the day my diagnosis was confirmed (PV, 4.5 years ago) and I think sometimes the medics, while trying to be helpful, can overload us with too much information too soon.
- I strongly recommend attending any of the future in-person MPN Voice forums if practical as suggested by Maz. I've attended 3 now (with another due in a couple of weeks time) and it's great to be able to chat to, and hear from, others with a similar diagnosis and also hear from specialists. Without wishing to overdo the cliche, it really is a journey as we learn more about our specific diagnosis and the different ways we can all react both physically and emotionally.
- although now fully booked for attending the MPN Voice 'big day' in London on 16th November in person, I believe you can still book to watch it online via the MPN Voice website. This could be very helpful as it's planned to include 3 patient stories which may be both reassuring and interesting. I've attended the last 2 (1 online and 1 in-person) and am attending the next one and think they're brilliant.
- give yourself time to get your head round all of this and to absorb the wealth of information that is available and relevant. As others often say here, and have done in this thread which I totally agree with, there can be benefits to being a better informed or educated patient but we have to go at our own pace and in our own way. I think we're very fortunate to have access to such a wealth of relevant and accurate information. The only drawback for me is that there is a lot of referring to 'cancer' all the time which while accurate can be unsettling. The good news is that I think we probably do get used to it (the "new normal" as already stated) and perhaps sometimes it can be about how we tell others and manage their reactions as it is about handling the impact on us.
Thanks very much for all the advice, very much appreciated. I will definitely try to watch the seminar online in November.
I am in total agreement with you about the “c” word. I deal with it better if I think about it as a disorder. I suppose everyone has to do what works best for them.
Welcome to the forum. This is a great place for hand holding and chatting and in depth information about how to manage ET, both physically and emotionally.
I remember when I got my diagnosis, my Hematologist told me I had cancer, "but I wasn't to think of it like that."
Then she went on to explain what the prognosis was likely to be, including the possibility of it changing into something more aggressive. I left the session much relieved and with the impression of that as cancers go this was one you can literally live with - a pain in the butt at times - but definitely one that can be controlled.
ET seems to effect people differently. I've been on this trek for 5 years now and it has surprised me how people with really high values never felt the effect of ET until they had an embolism and here was I, well below 1 million count with migraines, persistent amorphous pain and fatigue.
Everyone's journey is a little bit different. If you have any questions or feel like venting this is a good site to come to. Someone will most likely have had a similar experience to give you a hand.
Thanks so much for sharing your experience. I find talking to you all ( or typing, you know what I mean) so helpful and has made me feel so much better.
I know everybody’s experience of this disorder is different , but it has definitely helped a “ newbie” at this feel better.
I was just told by my CNS when I asked about the variation of the JAK2 it was a B617. She said the mutation rate was 3%, but the lowness of it didn’t matter as they would treat it the same as if it was 100%. It may sound silly, but knowing it was only 3% made me feel better. I have no idea about this as it’s all too biological for me. Questions to ask an MPN specialist maybe?
Anyway, I’ll stop going on.. thanks again to you and everyone else for taking the time to reassure and inform me.
Hi, Lorrie, first of all, like Maz says, we all know how you feel. I was diagnosed with ET jak2 at age 52, 16 years ago. Back then, it was considered a blood disorder. A few months after my diagnosis, the WHO declared it as a cancer. Over the years, there has been much more research into MPN’s and new medications. You got a lot of good information here. I just wanted to wish you well in your mpn journey.
Hi, thank you so much for your well wishes. I have learnt a lot the past 4 days.. this forum has been so informative thanks to the lovely people on it..
My greatest fear is how it will progress, but I can’t let that be my life as the years ahead will be miserable. I really do appreciate everyone taking the time to support me with their wisdom and experience.
Hi. Welcome to our group. I think all of us were scared at the time of our diagnosis. I’d suggest you get an MPN specialist & follow her/his advice. Don’t worry about reading too much. And be careful of the source of your information. There are many people who have had no problems with ET for 50 years. Some nuisance things can arise, like mouth sores with hydroxyurea, but there are ways to prevent those & other nuisances. I was diagnosed over 10 years ago with Myelofibrosis & have had almost no problems except for some fatigue. I stopped even thinking about my MPN because it’s had so little effect in my life. Never hesitate to ask questions or even complain. We’re all here to support each other. Take care. Katie
Thanks so much for your message. It is very reassuring to hear you have stopped thinking about your MPN. I am looking forward to being in that mindset hopefully sometime soon. It is also very good to hear you have had almost no problems with it.. and some have had it for 50 years with no problems, extremely reassuring.
It’s the anxiety just now that is the most debilitating part of it, but I’m sure over time this will get less.
Thanks so much for taking the time to reply , it’s been very helpful to me. Take care
I was diagnosed 9 years ago with ET and felt the same as you. It’s a worrying time! But as many have already said, it will settle down as you adjust and as your knowledge of the condition and treatment grows. The fear of the unknown is strong but can be overcome by knowledge, which is power!
There are many knowledgeable and kind folk on here who will help you navigate this new normal. You’re not alone.
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