M52, diagnosed with ET/JAK2+ (confirmed by a BMB) a few years back as my platelet count spiked over 600k. In fact I had a change from "normal" to over 450k at some point in 2013 and counts were between 430k-530k for a good 8 years, without any concern expressed by my GP.
With the spike I was referred to an hematologist who had me hospitalised for about a week, so that he could check every possible reason/symptom for the abnormal numbers. I reported a few visual auras over the course of 8 years and some fatigue (atrributed to overworking during the lockdown).
After many scans, MRIs, EEGs and multiple blood draws, my test results had to go to Nice (I live in the south of France) , where my ET was confirmed. Two weeks later I was given a cancer diagnosis, 160mg of aspirin daily and was asked to do a CBC every 6-12 months and my GP would decide when to be referred to a hematologist again. However they also referred me to a psychiatrist who has put me on an antidepressant treatment for 18 months (it must have been too obvious that the diagnosis did not go down well). They mentioned that the particular medication also had anticoagulant properties, so that would be all I needed.
Surprisingly, my platelets stabilised between 470k-500k during my treatment, had no more visual symptoms, felt full of energy and was very positive about the future.
Stopped the antidepressant and five months later, I started having vertigos, insomnia and anxiety (at the verge of panic). Platelets were at 560k and then a month later at 500k again. The hematologist said there was no sign of progression in the last 10 years, no spleen enlargement, no other findings that would justify a change in the wait and see approach. He insisted that I am like any normal person at my age and I should feel grateful that I have this kind of cancer and should live my life normally, as with the aspirin I am better protected than I was before my diagnosis.
However, he did point out that my renewed anxiety had to be addressed. His view is that I should have come in terms with the diagnosis by now and, given that I have a very demanding job and a family with 3 teenagers, here I am back on the antidepressant, waiting for it to kick-in.
I found this forum because I honestly need someone to understand, since my GP and hematologist, seem to downplay the importance of the diagnosis. I contacted another hematologist abroad, who is also a friend and asked for an honest reply. She said getting away with an aspirin is actually an improvement from my previous condition, considering that I do not have symptoms. She is generally against any treatment at this stage, especially with Hydrea, as she does not believe that controlling platelet counts has a huge impact on thrombosis and certainly none on progression. It could in fact increase chances for a more aggressive transformation. I suppose INF is also not an option given my mental state..and when I am 60, I'll have to stop the aspirin as well.
I have support from the family members who know but it is an odd kind of support, in the sense that they refuse to read anything about MPNs and do not want to talk about anything that could or could not happen. There are too many "ifs" to start talking about it..that's their approach.
I understand that there is no certainty and that if I continue like that..I'll probably die emotionally before anything happens. However as I see it now..I will probably have to make a decision on treatment at some point..but I do not have any information that I see being discussed here (i.e. allele burden, other mutations etc.) My hematologist feels that since my results have been analysed in a specialist centre and the diagnosis was low-risk ET, as my platelets are at the level they were 10 years ago..all these thoughts are pointless.
So I am here since my support network feels I am "fine"....I just cannot believe them...hence I cannot get the whole cancer thing out of my mind.
I would be sincerely grateful if anyone has gone through this and could suggest a coping strategy besides the antidepressant, which I do not see stopping for a few more years (at least), since I did not have these thoughts/fears while on it.
Thank you all very much in advance and apologies for the long post..I am just lost
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Metronome
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I hope you will agree that with this online community you have found a “home” of like-minded folk who get how you feel and will stand beside you in your journey with ET.
I wonder if you’re a bit like me and a very achievement focussed person? One of my biggest adjustments was realizing I wasn’t in control of my blood numbers (alongside being pretty annoyed at my body for letting me down). I channeled my control freak ness into learning about my disease and changing my diet to a high anti oxidant diet. That latter helped me feel I was doing something (ANYTHING!!!) to fight the disease. The other mood enhancer I use is doing an exercise I love. For me, addressing the ‘am I doing all that I can’ question with the affirmative gave me bit of control back.
I hear you about struggling to engage family talking about MPNs. Is there a local (in your country) support group that meet up via zoom? Do you have other friends with other chronic diseases or who have dealt with cancer? I’ve found talking to others (one with HIV, one a breast cancer survivor) both helps me deal with new challenges around my disease and helps me keep my lot all in perspective.
I heard an Austrian MPN expert say that the best outcome for his patients was that they didn’t think about their disease. That’s where I’m aiming to get to and I hope you find that sweet spot too.
Indeed I am paying the price for my over-controlling nature. I always wanted everything to be perfect. Worked hard, planned forward, lived well. At the age of 40 I decided to go down the way of healthy living. Good diet, exercise, quit smoking, annual check-ups. I had never felt better or healthier..however according to my records, it is exactly the time my platelets started going up. As if I shocked my body and put it in an unknown state of wellbeing.
I thought I could handle everything and my diagnosis proved (like you accurately say) that I was no longer in control of my own body.
Weird thing is that following my diagnosis, I did not pay that much attention to what ET meant. Being on the antidepressant must have helped to put things into perspective and decided I would continue to live a happy life. Then I was so well that had to get off the antidepressant and soon after I had a very serious relapse of anxiety/depression with ET being at the core of it. As if the medication was putting everything under the carpet.
I appreciate your suggestion to engage into something that would mean I am at least doing something to fight back. Nevertheless, by searching online, nobody seems to agree on anything, scientists included. Some say life expectancy is normal, others say nearly normal, others that it is severely impaired beyond the first decade. Some say Hydrea helps, other say it increases the toxicity and could provoke transformation. Some say increased platelets are related to thrombosis, others say that count is not related but it could be platelet behaviour, or the WBC, or something else. In my mind, the MPN is the definition of uncertainty..something I have been trying to avoid/manage all my life (ironically I am a risk manager for an oil company).
I do not know if I have to engage my family into that, however I feel it is their defence mechanism, so I do not insist. This makes me feel VERY lonely indeed, not being able to share my thoughts and fears. Imagine my sister is a doctor and refuses to discuss the issue saying this is by no means cancer, you haven't seen cancer.
Never had any incidents of cancer in my family as far as I know, with the notable exception of a close relative who was wiped out by a brain lymphoma within 4 months. Neither chronic conditions. I have a friend who had to get heart surgery but at least there, you know more or less what to do, avoid and following the procedure, he is as good as new.
I know all this sounds like I am asking for pitty..it is not the case. It is just that I do not know anyone with a similar condition to relate.
Hi. I am not an expert or anything. I know its easier said that done but try not to overanalyze things related to ET. I was diagnosed 6 months ago. After the early stages of shock I came to conclusion there is not much I can do. The only thing I can do is to live as healthy as possible. I ditched all the unhealthy habits. I try to keep exercising almost every day etc. My advice would be to stop reading about it too much. Stay active as much as possible. Long hikes can work wonders etc. Good luck.
Sure there is no point in reading and analysing. First and foremost, I am not a qualified scientist and even scientists appear to have so many different views. I was trying to find one thing they agree upon, something like a base scenario but I could not.
The best way is to worry about it every 6 months when I check my blood counts but even that seems to be overwhelming. You see there was a time when a headache would be just that and would go away with paracetamol. Now, something as trivial as that makes you (or me at least) thinking.
I feel happy for you that you have such a positive mindset. I wish you the best from the bottom of my heart.
Thank you. Same to you. Try to stay positive. Its the only thing we have I think. For me the choice was clear. I could stay on the drinking and smoking path and probably die from thrombosis or change my habits and live it day by day and hopefuly be there for my kids. For me the choice was clear. Good luck
This forum has been an absolute godsend since my diagnosis six years ago. I’m pleased you have found us, as you will find plenty of knowledgeable and supportive members here. We understand your concerns.
Have you considered consulting with a MPN Specialist? Professor Jean Jacques Kiladjian in Paris is renowned in his field. Don’t know if that’s an option for you? It’s vital for your own peace of mind to know whether ‘watch and wait’ is really appropriate for you, or if cytoreductive treatment is a better option. Only a doctor who specialises in MPNs will truly be able to discuss and advise you. I’m convinced if you do this it will eventually help alleviate your anxiety.
I wouldn’t be too dismissive about Interferon being an option at this stage. Your anxiety has probably escalated because you’re still trying to make sense of the disease, treatments, prognosis etc. It doesn’t mean you will always feel this way.
By the way I am 67 and still take aspirin, no problem!
Thoughts are with you. Anxiety can be overwhelming!
The impression I have is that there is a very specific protocol for dealing with these chronic diseases and this is outlined by the FIM (France Intergroupe syndromes Myéloprolifératifs), where Dr. Kiladjian is the head. The approach is that platelet reduction medication has to be used only when platelet reduction is warranted (i.e. symptoms non-responding to aspirin, smoking, hyperlipidemia, age over 65 with cardiovascular factors).
I have been told several times by my doctor(s) here that there is a very specific treatment protocol from which they would not deviate. Generally they avoid cytoreductive therapy as they see it as largely toxic or (the newer meds) unproven. I have been warned by my hematologist more times about the possible effects of Hydrea than its actual benefits.
So the framework is there...I know what will happen "IF"/"WHEN" but that is exactly the problem. I am now in the lookout for symptoms and given that I had it for over 10 years prior to diagnosis (usually deducting ten years from the average life expectancy charts...yes it is that bad), I am fixed on that. The fact that this happens 2 years following diagnosis, means that I have a lot of work to do to come in terms with it.
In any case I am grateful for your understanding and patience. Wish we could have met in another forum (considering the circumstances, I would even sign up for the knitting and crochet forum) but it is what it is and we have to look forward.
It’s frustrating. We’re constantly hearing from MPN Specialists their strong belief that the interferons promote a deep molecular response in our disease. With this thought in mind, surely it makes more sense to inform any ‘wait and watch patient’ of the advantages/disadvantages of commencing Interferon treatment and allow the then informed patient to make the decision to start treatment if they so wish, regardless of the criteria set down.
As for the ‘odd’ family support, they’re probably downplaying it to protect you, and possibly themselves too. My daughter always talks about ET in a lighthearted manner. My son doesn’t talk about it at all. Everyone copes in different ways. That’s the beauty of this forum, we can off load here, because we all get it!
Anyway, it’s good to see you still have a sense of humour in all of this. Crochet and knitting forum indeed. You wouldn’t catch me anywhere near one.😂
I have to say that I agree with Mydtery75 below. I was diagnosed with ET last summer at the age of (a very active) 70. I take Hydroxy Carbamide + 75 mg aspirin and have had absolutely no side effects for which I am very grateful and in fact I tend to forget that there’s anything wrong which for me is all I need.
Like you, I find that my familyfamily don’t want to discuss my ET but that’s also fine as I don’t want them to be worried. Probably because I’m so busy they assume that the ET has gone away!
So please don’t over think and over-read and enjoy your healthy lifestyle and hopefully you’ll eventually get used to your diagnosis and forget there’s anything wrong.
I am 71 and was diagnosed in July of 2017. I too take Hydroxyurea and Aspirin daily. I am grateful I tolerate the Hydroxyurea so well. Yes my hair is thinning but I would have a hard time not feeling grateful for the treatment.
The cost of any other treatments are not affordable if your retired, on a fixed income but don't qualify for the US government's Medicaid system. So that makes me even more grateful.
So I thought I would say hello from far away (Pacific NW, USA. )
add me to the Seattle list. E.T. Since 2019. I meet with Dr. Halpern at Fred Hutch. My team has been great. I’m on the verge of possibly shifting from an experimental drug, bomedemstat to Besremi. Big decision. Sending my peeps love, good to know I’m not alone
Add me to the Seattle list. My care is through UW Medical Center. I have option for MPN consult through Fred Hutch, but the guidance I’ve gotten from Hematology team at UW has been stellar. ET Jak2 diagnosed 8 months ago. Did 6 months of HU + ASA (tolerated well, good response) but I recently switched to Pegasys due to significant skin cancer history. Really happy with the integrated care through UW Medical center.
Trying to forget that there is something wrong is the tricky part here. The medical approach is that as of now, there is nothing that should make me concerned. The thing is I am obsessed with everything and I see everything I feel as a symptom. I am professionally active because I was at the top of my career path when diagnosed and I cannot afford to stop. In all honesty, I wish I knew why it bothers me now and not two years ago when I got the diagnosis. It is kind of a post traumatic stressor for me which prevents me from enjoying life.
I understand the family approach for sure, it is just that I have to share how I feel and it appears nobody believes me, leading me to the conclusion that I am indeed losing my mind.
I try to stop over-reading..but as you know..we are all searching trying to find a line or a story that would give us hope...and then you stumble upon one gloomy research paper..and you know the rest.
Again, thank you for your support which is one of the things that make me feel better..really appreciate it.
Just a quickie as I’m travelling. The one thought or phrase that I hold on to has been my haematologist’s words that ET is only classed as a cancer because it is a proliferation of cells (platelets) that is out of control, but is completely treatable and controllable even if it is incurable. Perhaps at my time if life I am more accepting but I’ll go down fighting every inch of the way!
Hi, and welcome to the club you probably never knew existed.
The beginning of our journey is very similar - my platelet count has been high since about 2015, but nobody was concerned about it until I got a new Dr a year or so ago. She sent a referral to a hematologist and it took almost a year for me to be seen. A month ago it was determined I am Jak2+ with a diagnosis somewhere between ET and pre-fibrotic myelofibrosis. So, this is all very fresh in my mind/world and I can really appreciate how you’re feeling.
I am starting to see that I think the key to staying sane thru all of this is learning to accept the uncertainty of it all. I am also a control freak and the idea of a future where I don’t know when or if this will progress makes me very uncomfortable. But really… nobody knows when their time will come. I could get hit by a bus tomorrow. My situation really hasn’t changed all that much in the sense that the risk of this progressing isn’t really that much higher than any of the myriad of ways I could die at any given time. My time will be up when it’s up and at the end of the day I don’t have any less control of that now than I did a month ago before I was diagnosed.
That said, this is still a big diagnosis and I think many of us had never heard of these conditions prior to being diagnosed, so it’s a lot to absorb. It also does force us to face the reality that we’re not immortal and since that’s not something most people think about regularly, it is still a shock. This is something that does affect us, many of us on a daily basis, depending on our symptoms and treatment. In that sense it does change us. It does make us look at our future in a different light and acknowledge none of us are really in control of our health and what may come our way. As such, I think there is some grief involved because our future may not look the way we imagined it to be. Grief is a process that takes time as we move thru the various stages and generally, eventually, leads to acceptance. It sounds to me like that may be part of what you’re dealing with? The shock is wearing off and now your brain is just trying to find a way to process it all. That path is different for everyone.
But… it’s a path that you can control, to a degree. You can choose to do the work required to get you to the place you want to be at mentally. Imagine what the best case scenario for your life looks like to you… maybe that’s a scene where this isn’t something you focus on all the time. You think about it once a day when you take your aspirin and then try to put it out of your head. Or, maybe it’s a scene where you embrace this to the point that you become an advocate to raise awareness and raise money for research. Or, maybe (probably) somewhere in between. If you can visualize how you’d like to deal with this then you can chart a course for yourself on how to get there. Huzzah - control!!!
I would also suggest you might benefit from some guidance from a therapist who specializes in chronic illness, or even grief. They can help you to develop some coping skills to deal with the anxiety and help you thru the process of accepting what this all means for you. Talking about it can really help, particularly if you’re not getting that kind of support from your family. A therapist may also help you determine what kind of support you need and how communicate that to your friends and family in the hopes that they can better support you. This is likely a shock to them and they need to accept it themselves. They probably don’t know what to say… the “C” word tends to make people feel really uncomfortable. Perhaps if you can figure out what you need from them and make it easy for them to give you what you need, then maybe some of them will get on board.
My therapist suggested I do some breathing exercises, meditation and visualization. It’s all very woo-woo for a girl who is pretty skeptical of that type of thing, but I figured it couldn’t hurt and what do I have to lose? So, I committed myself to trying it for a month, so at least I could tell her I tried at my next appt. Can you believe it’s actually helping?!!! It’s wild. I deal with a fair amount of anxiety, even before this, and the breathwork has really made a huuuuge difference. It has calmed my nervous system down immensely. She talked about our brains going into fight or flight mode (and I’ve been largely stuck there for reasons unrelated to my recent diagnosis) and how the longer your brain is in that state the quicker/easier it is for it to go there when something happens. You have to build new neural pathways so your brain has an option to go to other places when faced with something scary. Somehow the breathwork and visualization stuff helps to build those new paths so your brain doesn’t knee jerk into fight or flight mode so quickly. I don’t presume to understand the intricacies of it, but I am pleasantly surprised with how much calmer I feel overall. I’ve been using the Headspace app and it has literally been life changing for me in terms of managing my own anxiety, med-free. If that’s something you’re open to I’d highly recommend at least trying it. It can’t hurt, right?
I know it all feels very overwhelming right now, but it won’t feel this way forever. Your brain will figure out a way to process and accept this and you will find a way to move forward in a way that makes sense for you.
In the meantime, these good folks here are a wealth of knowledge. One of my main coping mechanisms that satisfies my control freak urges is to research and arm myself with as much information as I can get. When I understand what is happening and why etc then it gives me a sense of control and makes it less scary. This forum as been amazing for that.
I’m sorry this turned into a novel… your story just really resonated with me. Thank you for opening up and reaching out. You don’t have to go thru this alone.
Thanks for sharing. Sry to go a little offtopic but I am also looking to get into mindulnessa and meditation? How do you like headspace? Is it worth it?
I use The mindful movement, podcast on various apps I think. It’s free and has a range of guided mindfulness/meditations. I have anxiety and this seems to work for me
I went through your reply a few times and it really is close to the way I see things.
I am a control freak by character and profession..always have been..
For me a day well spent would be the day you have dealt with your obligations and have set the basis for better things in the future. Only this way, you simply go through life trying for a "future" which you are actually pushing down the road and lose the real meaning of being happy.
I have spent my half century on this planet thinking hard work is the essence of happiness (and I blame my German grandfather for passing these genes to me) and so I justified endless hours of studying and working...and at the very moment I said to myself..this is what I wanted for me (job, wonderful wife, family, dogs)...kaboom...my so thought competitive advantage turned into my achilles' heel.
True, nobody knows when his/her time will come...and I also believe life by itself is meaningless it is us who give our lives a meaning. Nevertheless, as I was used to work with statistics, to identify strengths/weaknesses and to devise contingency plans..I thought I was covered..since I was doing my best to live a relatively healthy life...you know..everything in moderation...I was hoping to die..ehm in perfect health. Diagnosis changed the odds and got me way out of my safety zone.
You mention grief..and I have had my fair share in my life so far...but I see that for me it is typical to face hardships with remarkable calmness and collapse (in a PTSD fashion) a year or a few years later. Hence I had to accept that I needed to see a mental health specialist and ask for help when hardships concerned my very existence (I now have two actually).
My family (including two doctors) are dismissive of my concerns and do not use the "c" word. They do not want to engage in discussions since they feel the situation is so uncertain that there is nothing to talk about seriously. They feel scientific knowledge in this field is still incomplete to make predictions..so them (like my hematologist) refuse to talk about the future in a condition dominated by "ifs". Their advice is to stop reading and start living...which I have to say is also the advice of my therapist (to get out of bed and start socializing). So I am quietely swallowing my pills...hoping they will work again and help me put things into perspective.
I am not such a great fan of psychotherapy to be honest, primarily because your mind needs to be ready to absorb information and learn techniques. Health anxiety is not exactly the right mental state for that, hence I started with medication. I also find hard to comit to something my reasoning rejected, so meditation, yoga, acupuncture etc are things I find hard to start.
Faith is something I am not discussing in public as I find it is very personal. In our case though, we have an error in coding (the mutation) which implies an imperfection in a world that is meant to be made perfect. I have seen system crashes too, so I am not surprised.
I want to learn as much as I can..but I am not sure if this is a good thing given my limited knowledge which prevents me from reaching the right conclusions. I do enjoy the warmth of this forum and the kindness with which I was accepted.
Thank you for your kind reply...it is good to find people who are willing to spend time just to make a stranger feel better.
Hi Metronome, thanks for reaching out on this forum and sharing your journey and struggles. I'm sure I speak for many in saying it is really helpful knowing we are not alone and are lucky to have this place to connect with each other.The main thing I want to say is I HEAR YOU. Having an MPN is not easy, because of its symptoms, the treatment, the stigma around it being a 'cancer', the unpredictability, the unknowns, the other people's opinions.... so I hear you. Personally I think it's unfair for someone to say to you you should have 'come to terms with it by now'. Everyone is completely different and their MPN impacts our lives in different ways. My one piece of advice would be (if you haven't done already) to seek out counselling or psychotherapy. There is SO much to be said for talking with someone who is completely unbiased and solely there to listen to you, whom you can be entirely open and brutally honest with. I think it will help with coping strategies, getting things off your chest, knowing where to go from here and above all understanding yourself even more. In my opinion almost everything is interlinked and exploring yourself on a deeper level could drastically help you manage your MPN and associated concerns. If you're interested I have someone I'd highly recommend because of their approach, and they do online sessions (they're based in the UK) so let me know if you want me to send you their details.
Someone to hear and basically someone to acknowledge that this is a real problem..that's what I was looking for and your support means a lot to me.
It just happened that I saw an interview of an MPN specialist, saying that if you have someone who have not come in terms with an ET diagnosis after a reasonable period (he said 6 months or so) then they do provide psychiatric support and medication. In my case, this was part of the protocol as my anxiety symptoms preceded my diagnosis..so I left the hospital with antidepressants and anxiolytics (never taken any medication before that moment). So there is a consensus that if you don't accept the facts reasonably fast, then you need to be medicated to get over it. Sad but true.
I have started again to see my psychiatrist and do psycotherapy as well. If everyone around you tells you you have to deal with your anxiety..then chances are they see something you're missing. Getting labeled an "hypohondriac" suffering from generalised anxiety and moderate depression because of it, and accepting it, is just the first step.
Thank you very much for your kind words and the warm welcome.
Hi there, this is a very lonely disease to have, that is why this group is so important because nobody ( even our care providers ) seem to understand that our symptoms vary from day to day, sometimes hour by hour. Some fortunate people have no problems and that's who the medical people talk about when you mention your symptoms because honestly, I don't think they know that much as to why these things happen to many and not to others , and then that leaves you feeling it must all be in my head! So when they cheerfully say you will die with it and not from it, they seem to forget that means there is no end to it either ! and that's a long lonely road to travel on your own , ( again, thankfully we have this group ) . So lastly I just want to say, low mood and anxiety are worse when you are tired and this is a busy world to live in with a family ( very tiring 😉 ) and unfortunately every day we get a little bit older!😉I still have to struggle with with all this from time to time, despite having a wonderful hope for the future ( JW.ORG ) and this wonderful group of people reassuring me with their posts about their problems, that I am not alone on this journey.
Indeed, symptoms is something I cannot really define in my head. There's my doctor who highlights thrombotic risk (naturally) but speaks to me about pins & needles in my hands and feet when I do not have any. This makes you think it's all in your head and even if symptoms are related, I do not see how these can be dealt with.
One example is the brain-fog and inability to concentrate which occured to me both 2 years ago and last December. In theory, cognitive symptoms can arise from problems in microcirculation. My tests show platelet levels 10% above normal and overall decent circulation. So with no proof, my complains are dismissed and attributed to my anxiety (it can be that for sure) by doctors and family alike, leaving me sound like a miserable person looking for sympathy. Whatever they are linked to..all I need is someone to say..yes..I believe you..but the "all in your head" reply is the one I am normally getting.
I am struggling with what you are struggling..and yes technology has made this world such a difficult place..at home, in the workplace...
Bridie123, I note that you refer to the JW organisation. I would suggest that you make sure that your haematologist knows that you are a JW, because, if you were to progress to Myelofibrosis (most people don't), one of the frequent treatments would be a blood transfusion. I think the doctors would need to know well in advance so that they can look into other options.
Hi there, thank you for your kind concern. Yes I am aware of the process of bone marrow transplant involving blood transfusion. I would like to reassure you that Jehovah's witnesses take good care of their health because life is indeed very precious. We do research into possible treatments we might need,and do everything we can to help doctors and surgeons treat our conditions in the best way possible.
We carry legal medical directive cards, which our doctors should also have on our records and if extra special help is needed we can call on our hospital liaison teams. Doctors in general appreciate this. Hope this helps.
That's good to hear. I wouldn't imagine that you would have a bone marrow transplant at all, but what I meant was: be ready just in case you progress to Myelofibrosis, as transfusion is often part of the ongoing treatment. I know that Jehovah's Witnesses take care of their health and I personally respect your choices. Jennie
Brief reply, of necessity, and no need for me to reiterate what others have already said, but here’s a thought: if ‘MPNs’ had not been renamed - in other words, had they remained ‘disorders’ and not ‘neoplasms’ - do you think your anxiety would have been any less severe?
I am afraid they have been renamed for a reason following the discovery of the JAK2 mutation.
I totally understand what you are saying and to a certain degree, it might have been easier to share with others if you did not have to use the "c" word.
Nevertheless, for you..if something has the potential to shorten your life, or reduce your quality of life with serious complications on your wellbeing, job, family...would the name really matter?
I think it might matter. Take Type 2 Diabetes, for example. That also has the ‘potential’ to blight and shorten one’s life, affecting the heart, kidneys, eyesight, etc. and Prof Harrison has likened ET management to that of diabetes, insofar as it’s a chronic condition that needs managing and monitoring. But do you think you would feel the same way about it as you do your MPN? I pose the question simply because I experienced a milder form of your anxiety and needed to find coping strategies. Many of us must have mutations of which we are unaware, but not all will manifest in a disease, and even if they do, many are controllable. Knowing we have the JAK2 mutation must surely be better than not knowing?
Thank you for taking the time to reply. In fact I believe that while it might be easier to say I am a diabetic (helps getting it off your chest), as long as the odds turned against me, I would still feel anxious. My anxiety is not caused by the name, it is about potential consequences for me and the ones I love.
Knowing about the JAK2 mutation depends on the knowledge of how this can affect me and this still remains unclear although there is ongoing research. It all goes down to how I can use this information. As long as the mechanism of MPNs remains unclear and medications are under review (have a look at the potential side effects of Besremi for example), me knowing that I am JAK2+ could or could not mean anything...if for example it turns out another factor is implicated (like LSD1), would supressing JAK pathway help? Does it help taking a potentially carcinogenic agent like Hydrea to reduce platelets, if platelets counts by themselves are not related to thrombotic risk? To what degree am I qualified to use any information when the ones who have the knowledge find it hard to agree.
I know exactly where you’re coming from. That the medical profession itself is so divided/uncertain/ambivalent about some of the treatments/prognoses is one of the most anxiety-inducing aspects of MPNs. But I think that’s true of lots of diseases. I had a mild MI before my ET was diagnosed. Was that because my platelet count was in the 600s? Certainly my WBC was within normal limits, so there was reason to suppose the thrombocytosis WAS a factor, hence beginning cytoreductive therapy. Yet Dr Spivak and others will tell you it’s always the hematocrit and erythrocytosis that poses the greatest risk for thrombosis. Nevertheless, do you think I received any clear-cut answers about my cardiovascular health? No. One senior cardiologist insisted I remain on 80mg of Atorvastatin for life; others said it was dependent on my lipid panel - including my GP, who said I was probably over-medicating. One said, don’t stop taking a beta-blocker; another said, as I don’t have arrhythmia or heart failure, I could stop it. Whom do I trust? You’d have thought that CVD was fairly straightforward to grasp, yet the medical profession cannot be unequivocal about that either. I suspect it’s true of many other diseases, too.
As far as treatment’s concerned, I was on HU for a year before asking to switch to Pegasys. I also didn’t want to take it long-term, although some on this forum have for 30~ years without problems. Still, to me it felt like a blunt instrument - unlike Interferons, which have witnessed a renaissance in recent years and which can induce deep molecular responses. Others here, like Hunter, will testify to that, and there’s evidence that it DOES matter, clinically speaking. Unfortunately, as you probably know, allele burdens aren’t routinely tested here in the UK, so I’ve used my blood tests as a surrogate: I had a very quick response, which, touch wood, has been sustained for the past year. My platelets were 248 at last count, whilst maintaining haemoglobin levels and neutrophils, and as I’m asymptomatic, I try to put the future and what it might hold to the back of my mind. I wouldn’t pretend it doesn’t creep in from time to time, but it doesn’t dominate my every waking moment as it did for 15 months following my diagnosis. Others on here assured me this was possible - and they were right. The challenge is, I believe, almost entirely psychological, but not insurmountable. I also take comfort in the knowledge that huge strides are being made in MPN research and treatments - including LSD1 inhibitors. The landscape already looks different and, as the specialists maintain, it will only get better. As far as life-expectancy is concerned (always a queasy subject!), I have no doubt that our expectations will be surpassed. I believe this not just because of the medical advances taking place, but because we are in a position to influence our health in so many positive ways. Since I was fortunate that my MI didn’t do any major damage to the heart muscle (I walked over 110,000 steps recently in 5 days without even raising a sweat), I actually view it as a blessing in disguise. My diet and exercise regime are MUCH better now, whereas so many people take good health for granted, maintaining poor habits that will no doubt affect their QoL and longevity. I’m sure that my better habits will offset any MPN drawbacks. Even if I’m misguided in that regard, it’s helped my mental state no end. I wish the same for you.
This is an interesting question. I was diagnosed with ET in 2001 when it was "just" a disorder. It was a shock but once I had learned something about it I realised that it really was another chronic condition which needed good management. I had nineteen happy years, just having to manage life with a bit more fatigue and some medication side effects. I don't know if I would have felt differently if it had been called cancer. I always knew progression was possible but not inevitable. When that happened, that's when the real fear set in.
For a while it was fine on Ruxolitinib but Rux doesn't work forever, my blood counts were falling, especially platelets (down to around 16) and my haemoglobin needed topping up with transfusions, so I opted for a stem cell transplant. That was last September and I am now in the long process of recovery (which is going well).
The treatment is described as curative but there is a possibility of relapse which I try not to think about. Also, stem cell transplant recipients are never discharged, eventually the check ups will go down to once a year. But generally, yes, I think we can say cured. Blood tests show no trace of the JAK2 mutation now.
Metronome - first, thank you for your post. One of the most important aspects of this forum is the willingness for members to share honestly. It always amazes me that despite the overall heterogeneity of our diseases we all face many of the same issues/challenges.
Similar diagnosis history - I was officially diagnosed via a BMB and the Jak2 blood test to have ET at 50 years old. This was after having elevated platelets for 7 or 8 years (that we know of - could have been longer but did not start receiving annual physicals until I turned 40). My GP told me to take an aspirin but nothing more as my platelets went from 480 to 580 to 680 to 780. A move in 2019 necessitated a change in GPs and the new GP did an initial work up - when he saw the elevated platelets and the history - he ordered a follow up test 3 months later and when the platelets had hit 850 demanded I see a specialist hematologist (who happened to luckily be a well versed MPN specialist).
It has been a whirlwind since diagnosis. We continued aspirin and watch protocol at the start of treatment (I had been on aspirin for 7 years already without a diagnosis) given my age and lack of thrombotic events (considered low risk). My platelet levels, after steadily rising over 7-8 years all of a sudden went from about 900 to 1,400 and I started to get some previously not experienced bleeding around my gums. My MPN specialist, who is a firm believer that in general we target symptom burden vs just platelet numbers suggested at that point we start cytoreduction therapy. Started with Hydroxyurea was on it for about 6 months - started to lower platelets but also caused a host of other issues so requested to be switched to IFN (Peg). I also did not relish the idea of being on HU for 30 years and had done some reading (a lot of it initiated here) on how Peg might help slow or reverse progression in some patients) - Peg has been a work in progress as we try and find the right dosage and time interval but hopefully we have settled on what might be our long-term maintenance routine (although after having monthly blood draws it has been strange to go to quarterly draws the last 9 months...)
Protocols can be difficult and each health system is different. I think in general, I have found knowledge to be a good way of helping me cope. I went into my first few appointments with my MPN specialist armed with binders of data/articles (including some written by him) and written lists of questions (to make sure we covered what I needed to know). I also pushed to get approval to begin Peg. The more assertive we are as patients; the more we know and are willing to stand our ground with health care providers the more likely we get to a shared acceptable result. At the end of the day it is our life and everyday well-being and that is more important than any protocol or ego.
I have also found information is power (this has always been my personality). When my MPN specialist suggested a BMB (after already having the Jak2 diagnosis), I said yes as I agreed it important to have a baseline for future comparison; I pushed the doctor to fight for the complete gene sequencing which gave me my Jak2 allele burden and told us that I have a very minor (2-4%) TET2 but no other mutations. I also asked another hospital/doctor to look at my BMB slides and analysis as I was (am) worried we are really dealing with pre-PMF and not just ET. All this has helped me to focus on knowledge; possible therapies and "getting on with life".
The one are that still remains a great challenge is that this can be a very lonely disease. We are very fortunate that we have this "type" of cancer and that treatments are advancing every year. But it is hard for others to truly understand (even for some doctors..). We have 4 kids (11 - 20 years old) and we have not told them. My wife fought stage 3 breast cancer 7 years ago and it was, understandably, devastating for all of us but especially for young kids worried about losing their mother. So I made the decision not to say anything to them (my wife initially wanted to) as I am pretty sure as soon as they heard the word cancer it would take them right back to their mom's experience. While I do think it was/is the right decision, it has meant that only a hand full of our closest friends (literally 5) know of the diagnosis. Not a huge problem, except when it is and I would like to speak with someone about why I am so fatigued; why my sex drive has plummeted (after starting cytoreductive therapy); why I have aches and pains that I probably shouldn't have in my early 50's...It is a weird overall situation - luckily other than a day or two after my bi-weekly Peg injection - I have few symptoms and nothing that I can't handle; still exercise 6 days a week; travel frequently and with the exception of having drastically curtailed my alcohol intake - my social life has not changed much at all. But..doesn't mean that there aren't times that are much more difficult, mentally/emotionally than others. I am leaning into these times and trying to allow myself to be as present as possible in those feelings as well (which. has been probably the hardest part of all this for someone who was raised and in general agrees with the mantra "stay calm and carry on".
Did not mean for this to be so long - but wanted to thank you for your post and for you to know you are far from alone!
I thank you for reply Solyesh. It is important to see how others deal with such a situation. At this stage though I am trying to decide if in my case knowledge is power or not. You see, the last thing I heard from my hematologist last week, was that the only difference for me, between 2013 and 2023 was the fact that I got a diagnosis. He is right.
I am not so sure how I would have reacted had I been given the diagnosis when my platelets first exceeded the normal ranges. In my case, ignorance was bliss and allowed me to move on with my life personally and professionally.
I have always been proactive, while my wife lives for the day and deals with problems if/when they arose. That is why she had been caught "off-guard" several times and I thought this was a weakness. Comparing our mental states right now, I kind of envy her that she has such a carefree approach.
I have also been following developments in the field of MPNs but I do not have the ability to have a clear view on pros/cons. Something that appears promissing can be found harmfull down the road. Is this a responsibility one can base on limited knowledge and understanding? So the question I am asking to myself is whether knowing all this (or bits and pieces) would actually help me live a better life. By experience, I see that learning about a condition for which nobody really knows too much, has hurt my quality of life more than the condition itself.
Sharing though and getting all this positive energy from you all, gives me hope, and for that I thank you!
Hi - my other half is 80 and was diagnosed ET 15 years ago when it was still a relatively unknown condition. Like you he had a HUGE stressful job for his whole life and didn't understand the condition - his platelet count was a whopping 1200. He started on a high dose of Hydroxycarbamide - and is still on a reduced dose to this present day. He will be on it for life along with Aspirin. His platelet count now is in the region of 350 and the only time we ever think about the condition is when we have to form to fill in that askes what ailments he has - I always feeling like saying 'none' as it does not influence him or his way of life. He thoroughly expects to live until he is at least 95 - his father did and his mother made it 98. This something you will most probably die with, rather than die of. Dig deep and stay strong.
I would just add don’t be afraid to see a counsellor. I have always been healthy and my ET diagnosis hit me hard. I don’t discuss with family (one can’t eh?) so found I really needed to offload somehow so accepted (reluctantly) counselling. It was the best thing as I could just tell it like it is - and I believe everyone is knocked for six being diagnosed with an incurable cancer (even with a small c). I had 10 weekly - and latterly fortnightly -one hour sessions via zoom, another plus seeing their face as all other doc/hosp contact is via telephone
The result of being able to talk honestly definitely helped me enormously and since then I have coped and even got used to taking daily hydoxycarbamide. So I hope you can take heart with all the support offered on this site and find your way through your anxiety. All the best
Thank you. In fact I was seeing a therapist and a psychiatrist two years ago as I could not find the root of my symptoms and this had triggered generalised anxiety, which required medical treatment as well.
Both agreed I was fine last summer...and indeed ET did not really bother me that much...an aspirin a day wasn't really such a big deal.
However, with the symptoms that re-surfaced around Christmas, I just could not know if it was due to the medication withdrawal or physical symptoms of ET. This brought ET back to my life..which triggered a new anxiety cycle and so on.
Generally, with the exception of some itching every now and then and a few visual auras over the years..I did not have symptoms from ET. All the diziness, vertigos, blurry vision, fatigue disappeared when I dealt with the anxiety but..is it the same this time around? Different causes require different treatments...but what if you cannot identify the cause?
It is the unknown to which even doctors cannot give a definite answer, that I find difficult to deal with.
So I am back on medication..which as you probably have heard, has its own side effects which complicate matters even further. The therapist is sure it is adjustment to medication that is causing all this...but he is a therapist right?
This is what we're trying to sort out...but as you can see, I have not done much progress in teh last 4 months.
This forum also serves as a huge comfort/support/source of information for the friends and family of sufferers. I attended one of the physical forums with my wife (ET JAK2+) and one of the sessions involved friends and family talking together. I can only describe the experience as eye-opening. To know that there is help and support for us non-sufferers as well helped me to come to terms with the diagnosis.
Like so many of the responses to your post point out, you're no longer alone. This can also apply to your loved ones. It might be a difficult conversation to initiate with them but, if you think they would benefit from it, maybe think about how you could include them?
The problem with involving others, in my case at least, is difficult to manage. There appears to be a "consensus" that I am overreacting to something that I should come in terms with after two years and with no particular signs of change.
I have two close family members who are doctors and they tell me not to repeat myself and not to call this a cancer. None from those who know in my family, want to spend time finding out what an MPN is, they say it is pointless because research and statistics are still vague, so what really matters is to check it as instructed and live on.
Perhaps the hardest thing I heard from a family member is that I am afraid I will die early whereas I've been dead inside since I started being so obsessed with the diagnosis.
So, overall, doctors downplay symptoms, family cares but does not want to know details..so this makes it a very lonely path indeed.
I understand completely. From what you write, it is unfortunate that the medics you know remain blinkered to this condition. Know that you have now found friends who can (and want to) help you.
The struggle you are having is actually quite common for people with MPNs. We all need to find out own way to make peace with having a MPN then work actively to manage the condition. We also need to have an individualized treatment plan based on our unique MPN treatment plan.
So how to cope? I think we all find our own ways. Here is what works for me.
1. Support from my family, friends, and faith community.
2. The MPN forums (my friends and MPN Family)
3. Maintain your sense of humor and find ways to have fun no matter what.
4. Surround yourself with things that are positive and lift you up.
5. Mindfulness practices - I practice Qigong.
6. Say the Serenity Prayer every day and take it to heart!
7. Educate yourself about your condition(s). Knowledge is power.
8. Create a high-quality treatment team who you trust.
9. Advocate for yourself. Assertive patients receive higher quality care. Passive patients do not. Remember that you are in charge of your care. It is your goals, priorities and preferences that must drive your treatment. Empower yourself to deal with the MPN.
Note also that treatment options are improving. There are new medications in clinical trials and we will soon have more options. One promising example is Bomedemstat. There are ore medications in development. Also note that one of the interferons is not out of the question. Just because and adverse effect could occur does not men that it will occur. You simply have to know what to monitor for and do so. Further note that you do not have to discontinue the aspirin at age 60. It is true that as we age we respond more strongly to aspirin, but most people stay on it. You may simply need to reduce the dose.
Properly managed, people with ET can expect to live a normal lifespan. You are more likely to dies with ET than from it. I was diagnose with ET over 30 years ago. It progressed to PV about 9 years ago. I have lived a great life and at age 67 continue to do so. In fact, I feel better now than I did 10 years ago.
All noted Hunter and I sincerely thank you for your time and information.
It is true that one needs a very positive mindset to start with..I guess that is my weakest spot.
I have issues recently with most of the things in your list actually, with my biggest problem being my family's reluctance to acknowledge that this diagnosis is serious and to learn more about it. I do not blame them in a way, since their view is that searching online makes you fixed on your condition thus limiting you in a constant state of misery. I understand they want to continue to live normally but I also feel alone in this.
In France, I find the medical community less positive on new treatments (unless they are researched in France ). Generally they tend to believe that we're far from an effective treatment and that there is proportionally a higher risk in getting treated early than following a wait-and-see approach.
In the community where I live, we do have two large hospitals nearby, one of them linked to the University. I trust the accuracy of the diagnosis and although I'd love to go to MD Anderson for instance (and I would had I been a millionnaire and single with no other obligations), it would perhaps be an exaggeration, considering my hematologist feels he needs to see my bloodwork twice a year and see me personally once a year (saying I am alow risk case). I am already labeled as an "hypohondriac" so I am trying not to break ties with my medical team here as we do not have infinite options.
Once again, I sincerely appreciate your warm welcome and I will try to learn from all of you!
I expect you will find more support here on the forum where so many live the same experience.
Since you are in France, you might want to consider getting a second opinion from Dr. Kiladjian, one of the world's leading MPN experts. Getting a second opinion is always a good idea when making significant medical decisions. Ethical doctors encourage it.
I am aware of the leading role of Dr. Kiladjian and as I understand from his role as president of the FIM, he is co-ordinating efforts to set guidelines for MPN treatment in France. At the moment, what the majority of hematologist in France do, is to follow the specific protocol, so I would not imagine I would hear something different.
I did look for a second opinion abroad and that was no much different from the one I already have. I would consider getting a third one though if I notice any changes.
Once again, thank you for your kind words and support!
I love your name because I was an opera singer and my husband, a violinist!
welcome to this group of sensational people who will always listen to you and give you honest advice or just an ear to listen!
you’ve written a lot in our blood, brothers and sisters also you’ve already written a lot and so have other blood brothers and sisters. Therefore I will keep it short.
for every single one of the arse getting this diagnosis has been a shock and has thrown us into fear, anxiety and depression coming and going in the first months. Once we learn about our illness, we learn to relax, and we know that it can be treated very well so that we can enjoy a vibrant life, especially when the thrombocytes are as low as yours and stable!!! That is a blessing, believe me! I have had all kinds of complications in my thrombocytes were going up 60,000 per year. I also had six TIAs, which are small strokes. Nevertheless, I immediately embraced my illness, studied like crazy and started to fix up my body.
by going on and anti-inflammatory diet and getting rid of all chemicals out of my life and from my environment. I have even managed to stop this illness from getting worse. at the time of diagnosis, I had a 13-year-old daughter and old in-laws who were passing away. Therefore I had my own sure of stress and people who depended on me. And I also have property that I am responsible for.
my opinion is to go and find an MPN and specialist and not just a GP to take care of you! It is normal for someone your amount of thrombocytes not to need any therapy accept aspirin. So take the aspirin and be normal again! 🙂🙂🙂
from what I hear through your writing, you are panicking because of this illness. I believe if you knew more about your situation and you had a good doctor to speak clearly and be humanly, supportive, perhaps you would not be so afraid. Stress is a big driver in this illness and raises the thrombocytes from one day to the next. If you really need the antidepressants then take them. I don’t forget that all medication causes nutrient deficits so check out your medication which nutrients they wipe out of your body and replenish them with good natural vitamins and minerals!
hi, my dear to see that this forum is in itself and anti-depressant! 😀
keep in contact with us, listen and learn and embrace your thrombocytes! 😉 you’ll be absolutely fine!
Thank you for your reply and your kind words Anag.
My confusion actually comes from the fact that my "symptoms" could actually be caused by either condition but my doctors are dismissive. So I am left wondering.
If my symptoms two years ago were from ET, then why on earth did they go away once I got on the antidepressant to deal with anxiety? This time around I said it was from the withdrawal from the antidepressant...the psychiatrist did not agree..then I thought, sudden vertigo, inability to concentrate...could be from the ET, hematologist said, noway...etc etc. All tests come out clear actually..and my platelet count was around 500k at that time, normal spleen size. I also had a brain scan..no findings (then again, in the TIAs there are no specific findings, please correct me if I am wrong).
So yes you are absolutely right, I am panicking because I do not identify a cause. It could be either one, it could be both..so I am making this projection for myself that even if I embrace the condition..every little thing will be triggering such a cycle. My plan is to continue the antidepressant and see if my symptoms go away again like it happened last time. It is a bit unlikely not to have any symptoms for 18 months while on it and then be hit by a train overnight. I imagine that ET symptoms are transient and chronic (like my visual auras, which have been resolved with aspirin)..I have a permanent feeling of being spaced-out..which I do not think should happen every day if it was ET. I feel deprived of energy and drowsy but withdrawal from antidepressants can do that..their reinstatement can do that and I have it every day..usually at specific times.
Oh I am just whining here but you get the point.
I do not have just my GP, I have a hematologist who is head of oncology in the local hospital, I have a cardiologist and a psychiatrist...I have more doctors than I would have imagined 2 years ago..
Thank you and all the members who kindly replied...without being judgmental, cause I had too much of that lately.
there is a lot going on here. I had my ETA diagnosis seven years after it was visible on any blood test. Even at 750 thrombose, my doctor did not send me in to a haematologist. She said it was some kind of infection. She is a top doctor at a very good hospital. This is why you never go to doctors who are friends they see nothing or see too much.
I was on all kinds of medication, is for all kinds of bull, to put it in understandable terms. I learned that if doctors don’t know where something is coming from they will blame it on whatever you call it non-existent. Everything was taking care of symptoms in my case. Once I had my diagnosis, I went on the autoimmune Paleo diet. In this forum, you can look back to so many answers that I’ve written to others. You can see all the information about. How I cleaned up my diet and my environment From all chemicals.
I was suffering from depression since I was 12 on and off and that has disappeared now for five years. After 33 years of eczema on my face is gone. My swollen, lymph nodes are no longer swollen. Same with my spleen. No more body odour, no more smelly mouth. My eyeballs are white and my fatty liver is gone! I also suffered from incontinence, which is also gone. I brought my body back to balance by replenishing, missing vitamins and minerals, reducing acidity in my body, getting rid of all 35 amalgam fillings and getting rid of root canals and cleaning the job on underneath which had anaerobic bacteria is in it due to dental work.
not a single chemical comes into my house. I watch everything with vinegar and bicarbonate of soda, and I wash our clothes with wild chestnuts. We are all healthier! And more sane! To treat any disease one must first stop the disease from being dangerous, and then try to treat the whole person. We become sick because of many factors in our environment, including stress which is huge! Stress will drive anything! Also unresolved trauma. There are so many ways to take care of stress and depression, which does not always include yet another chemical to burden our bodies. I find it is extremely important to have a very good functional or doctor or orthomolecular practitioner or someone who does bio resonance.
I put aside €3000 and tested out doctors in order to put together a team to help heal myself. After €1500 had been spent I had already found the right people who take me seriously, listen to me, let me ask any question, and support me. We are a team. I have done a lot of research not only in conventional medicine, but also in alternative medicine.I have found that getting my life back on track depended on both of these! I am much happier and healthier at 58 than I was at 42.
This cannot happen overnight, and Rome was not built in a day. Important is to start somewhere and take little steps toward a healthier life.
Your thrombocytes are not at all dangerously high. I am at 1200 if I don’t take my interferon. Hashimoto and autoimmune disease of the thyroid and because of everything I’ve done to my body to help it heal. I am able to take Besremi and it has not caused depression in me because my body has become stronger. I have had bronchitis 48 times in my life and pneumonia three times and six years ago I was not able to get over any cold Without a round of antibiotics. I am proud to say I have had one single cold in 6 years! I was even teaching little kids who are sneezing and coughing in my face and I didn’t get sick!
Try anyway possible to get rid of your racing mind and your fears. Let go of trying to control your life. Once I did that, I was able to accept what I can’t control and concentrate on that which I could control. Your family will be fine. I will pray for you for this. 🙂
hi I’ve read a few replies. I go along with them but I’d like to give you my view. I had a stroke age 50 and ET diagnosed age 60.
You are only 52 and you may well go on to need medication. Tell yourself you are going to live life to the full.
Think of all the things you want to do and them. Sort out your finances so that if you need to reduce your working hours you can afford to.
Don’t try to fight this illness work with it.
I tried to fight it for years and it made things worse. As for your sister being a doctor. I think she needs to be educated. I find my husband is the hardest to cope with only after18 months into his retirement I thinking he is seeing things differently.
Thank you for your reply Wyebird...it is the higher probability that my quality of life will only go downhill from now on which puts me in this situation. Weakness and dependence on others and on meds...this came all too fast..and still struggling to accept what for most people is the natural course of things.
You are right with your husband..everyone has a different mind set. Some see growing older as the opportunity to do more which they could not before. Some (me included) are defined by their ability to work and provide...I knew it would happen to me along the way..but a health complication makes it even more difficult to accept..
I was diagnosed a year ago after a Sports Injury & blood checks.
The shock of being told was pretty awful as I was called into a sofa type room to see a Dr & nurse in Haemotology. Sitting waiting to go in I was sat amongst cancer patients who looked severely Ill.
I was told I had to go on hydroxy for life to control it. My career I worked in I was used to giving people bad news , however I did not cope with myself .
I was very Ill for months after diagnosis. The Hydroxy my body rejected . I lost weight and no energy. I read lots on the subject but maybe too much , always negative thoughts.
My turning point was speaking to an MPN expert . After that my life changed . I was left just on aspirin as had no symptoms. Kept myself active . Pushed the diagnosis onto back burner of brain & got on with life promising myself to be positive.
I am now trying low dose of Interferon which has been excellent.
My biggest advice is to speak to an MPN expert . UK has the brilliant Professor Claire Harrison at Guys Hospital . She changed my view on this complaint entirely.
I rarely think of it . Bloods taken & checked regularly, if they go up I don’t worry now I appreciate anything can affect them especially stress & worry I avoid Good luck you will be fine 👍
I have lived in Exeter for a few years a long long time ago and only have good memories..I hope the Mill on the Exe is still there
Why did you have to take Hydroxy in the first place? Were your counts that high or simply the "protocol"? Why have you chosen to try interferon?
Part of my worries is that I see the majority being treated. I watch videos about life expectancy and everyone adds the "if properly treated" condition.
I am also on aspirin (160mg) and in the first two years I simply did not care much about my condition..then I suddenly realised everyone (at least the ones who post online) are being monitored regularly, receive treatment..and I told myself I am not doing enough, so I panicked.
My GP, my hematologist, my cardiologist and two of my family members who are in fact doctors, say that I do not need to, at least with my current profile and that I should concentrate on the mental side more, which indeed is the more troublesome.
My current monitoring schedule is having bloodwork tested twice a year..see the hematologist once a year and my GP once a year. The GP shares information with the hematologist and the GP would alert me and the hematologist if anything changes. In my case, I was told I might have to take Hydrea if my counts start changing fast but my hematologist warned me about side effects and toxicity...so he is not so keen to start (and neither am I).
I am constantly thinking of everyone's suggestion to see a specialist but my hematologist is head of the hematology/oncology dpt of a big hospital, working closely with the regional hematology departments. I fear that by escalating this might add more stress to my life and I am already walking a very very fine line between some normality and a complete break down.
You are right about stress..because the first time around I thought I had reactive thrombocytosis because of another cancer and this led me to a major break down, so in fact the diagnosis of a "benign" cancer was a good thing at the time. My platelets were 623k at the peak of my break down..gradually settling again between 470k-500k after the diagnosis, so I said, I can live with that.
Two years down the road and without any actual reason..I am now trying to control a new break down, with my diagnosis at the centre. I was happy when I had it at the back of my mind..it simply came forward and affects my daily life. I want to put it back in the background again..I seeked reassurance from my medical team..they said there is nothing different than 10 years ago...that should be enough to get me out of this cycle..but it didn't..
I wish the best for you and appreciate your support!
my platelets were only 590 at time they put me on Hydroxy. It was explained as if I did not take that medication I could have a stroke or heart attack as over 60 .
I was very fit & sail race twice weekly so found it hard to believe . But I took the drug to prevent that risk given no other choices. It was horrendous I felt so ill on it . I then educated myself reading up on this blood cancer. My platelets had been slowly rising for 3 years following a cycling accident & a massive haemotoma on my thigh. I am convinced that started this off. I refused to continue with Hydroxy. The MPN doctor I contacted suggested Interferon as it has shown amazing results in reducing platelets & keeping them stable .
I feel great on just a very low dose monthly. I have no symptoms with my ET. Jak 2. However it’s difficult to decide to take nothing & maybe risk a stroke . I have many friends young no longer here .
Yes Mill on Exe still open , lots of refurbishment . I used to belong to Exeter Rowing Club so regularly on the EXE. Hope you solve the mental stress of everything soon 👍Julia .
Welcome to our supportive family chat. If you have a question or a problems someone in this small world will offer you some quality advice. ❤️
My story in a nut shell, diagnosed with Jak2 ET from BMB at 52 in mid December 2020. 🎄Crushed me hard. ( I had raised platelets 17 yrs ago after my youngest was born and fell through the cracks in terms of follow up because I moved and switched Doctors) Kids came home from University for the holidays and my 20 yr old daughter read the symptoms list and matched almost all. She was found to be Jak 2+ and was diagnosed with ET a few months later. A few months along and I am requiring phlebotomies to control my hemocratic. PV is my new diagnosis 😱
I only had a few months to freak out and then had to wrap my head around helping my daughter. 😢
We see the same MPN specialist as our hematologist. GP is fabulous. We are in Canada so no allele burden is taken, followed or mentioned. I come from a very large family and we are the only ones with it. I did have a grandfather who died of a heart attack at 65 yr. Maybe related, but who knows.
We know anxiety can be high so we crush it. Find things that relax you, like walking and put on a podcast or audio book in your ear that is NOT related to this disease and learn about something new. Once you find enough interesting things you enjoy, GO traveling and do them. We also do some meditations, watch funny movies and breathing exercises. 🫶🏼🧘♀️
Inflammation also has to be crushed so adjust your diet and lifestyle accordingly. Mediterranean diet, less meat, more veggies, alcohol in moderation. Treat yourself like the royal you are. 👑
Find your support and lean on them when needed. Enjoy living, because you are still going to be here for a long time. 🦉
If you need help go ask for it! You are a superstar - remember to ask for it when you need it. Slowdown and smell the flowers because you can. 🌺
I have been on Pegasys for 12 months and am doing super fine! Daughter is on watch and wait and doing amazing too. 💉. Aspirin too for both of us
Adjust your thinking, appreciate your life.
We were told at diagnosis that “ our body has a secret, it can make blood clots, and now we know this secret too.”
Good luck to you! I know you will figure it out. ❤️❤️
Obviously I am at the "freak-out" stage still..and what worries me is that I started panicking two years after my diagnosis and without any real changes.
We do not receive any other information either...we're just told BMB confirms ET with JAK2+...everything else appears to be a US thing. When there are genetics at the core of a disease..I am not sure knowing much is ever enough or even helpful.
I wish the best for you and your daughter. Your positive approach is really inspiring.
please know that your reaction is not uncommon. The anxiety is caused by the ET. The months before the diagnosis were hellish. As a woman they ( Dr Google and friends) tell you it’s menopause when you put in just a few symptoms at a time. Restless legs, hot flashes at night, anxiety, exhaustion, insomnia…… brain fog….
I was lucky enough to have had the itch after showering for many years before diagnosis. 😳. Nearly drove me crazy. Started to feel good and the brain fog began lifting once I started with regular phlebotomy. I was such a slow bleeder even with all the extra fluids I was drinking. Luckily I was offered Pegasys as a treatment and jumped at it.
They will not offer you Pegasys ( not sure about Besremi as it is not approved in Canada) if you have any depression issues as it can magnify them.
My only goal was to try this drug and get back to feeling normal. I had many reactions, sleepless nights, super itch day and night, platelets not responding, little appetite, and so many more. Once the platelets started to move down, from high 900 to 700 I noticed. When months and months later they moved into the low 500 the brain fog was gone. The reactions to Pegasys did relax and for the most part I have none now, 12 months after starting.
You need to take this head on. You need to prioritize yourself and your health and look for the best care for you. Obviously you need to find some medical support that is supporting you. Once you are in some kind of control again you will recognize it and want to stay there.
My siblings know about my diagnosis but I only started telling a few friends now, years after. They had no idea what I was going through and offer much love. Just imagine all the things they themselves could be going through and I wouldn’t have noticed.
If you dig in the search of this site you might find some solutions to some symptoms of our disease. I learned that Super hot baths feel amazing - instead of a shower that made me itchy. Learning about the different meds and potential reactions. What is allele burden and why some countries don’t use it. What meds do what. What progression could look like, and what treatments look like for each. Knowledge is power and more motivation to enjoy all the things I have. I do recommend some breathing exercises for you. Love the app- Insight Timer and I still only use the Free side of it, someday will buy the full access subscription.
Amazing to find out that Breathwork can calm you down, put you to sleep, or even oxygenize your blood and help your sore legs. Learn about lymphatic movement, your vagus nerve and 4,7,8 breathing. You can also YouTube all these and learn about the human body instead of your disease. I also recommend you start with a Dr Bruce Lipton book. ❤️❤️❤️
I'm 51 with ET - I understand your anxiety. I am similar in having had a high stress job, ET with few symptoms, being highly analytical in nature and constantly reading research and treatments. I had severe bouts of fatigue, random joint pains that wouldn't go away, some weird bruising, etc. Doctors changed my diagnosis from ET to preMF to ET again. I grapple with the anxiety demon; Sometimes I control it, sometimes it gets away from me. My personal journey to achieving some small amount of peace had nothing to do with all the external things but with my frame of mind. Here's what I learned:
1. It's all changing constantly - diagnoses, treatments, and research. It will never end. Deal with what's there, make the best choice with what I have in front of me, and don't worry too much. There is no perfect answer to any of this.
2. Operate in two modes. Sometimes I plan, visualize the future, think about what needs to be done, ruminate on the meaning of life and mortality. But I also need to be able to switch to the now - appreciate the moment, see the details of what's happening, focus on the good at this specific time. Meditation helped me get to this state on command. It teaches how to focus to stop the brain running away with what-ifs, narratives, negative thinking. If I get overwhelmed, I switch. It's a skill that I had to learn.
3. Humor is a great coping mechanism. Most things in life can be either traumatic or ridiculous, depending on the light you see them in.
#2 was the most helpful for me. I can choose where to spend my time. Either dwell on what I can't control, or appreciate my life in general and any small thing that is good. I can worry about my son's future, or admire that he has turned into a genuinely good person that everyone loves to be around and makes friends everywhere he goes. I can sit here wondering why my knee cap feels like someone hit it with a hammer all night for no good reason, or I can go fishing and enjoy the good weather, calm lake, advent of spring, and time I have to wallow in it. I can get frustrated that the fish aren't biting, or I can recognize that the bass I see mocking me near shore are spawning and not interested in my bait today - they're out to make more bass which means good fishing in the future. So I sit on the shore for awhile watching, listening, and existing in the middle of all this for however long it lasts. Then I come home and enjoy spending time with my wife talking about everythign or nothing. If my knees still hurt I'll walk around with straight legs and occasionally moan like frankenstein which makes her laugh.
I didn't mean for this to get long but it was difficult for me to appreciate what it meant to change my frame of mind - future vs present, anxiety vs peace. Apologies for the length.
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