I am 36 and was diagnosed with ET in December. Are usually feel OK but the worst for me is my anxiety. I have moments where out of nowhere I get extremely sad and worried and all I can do is think about it progressing and missing out on my kids lives. I know that probably sounds insane and it’s very easy for people to say “well just don’t worry about it you are fine now”, but my brain just can’t comprehend that some days... I’m curious how long everyone has had their diagnoses? I love hearing stories from people who have had them much longer than I have. Gives me hope and settles my anxieties
How long has everyone had their mpn?: I am 36 and... - MPN Voice
I m generally positive but do get stressed Or worried at times .
When it happens I just stay with it and say to myself let’s see how long this lasts . It goes pretty quick if I don’t fight it !
If I do then I get worse and everything goes wrong !
I’ve had ET JAK 2 positive for 2 years . Anxious when got appointment with consultant and blood test . Don’t want to have to have to start taking meds . ....
it is good to have this site isn’t it . Never thought I would get so much out of chatting to people I don’t know . X
Thank you all x
I have had Pv since 2014.6yrs. At first I was extremely anxious about my future but as time has moved on I am more confident and condition is under control . Most of the time I feel absolutely fine !I started on Pegasus 45mg over a year ago and my blood levels are near normal now . I feel better because itching has decreased.Had no side effects on drug . Also take a daily aspirin too to thin blood. Just ask consultant questions or share on this site . We have a wealth of experience . You are not alone ! 🙂Take care
Hubby has ET/PV & was diagnosed 3 years ago but he thinks he probably has had symptoms for 3 or 4 years before that. He is always quite laid back, he generally doesn't understand MPN & tbf I don't think he wants to understand but it took me ages to not feel anxious. I was a blubbering wreck for many months, I did a lot of research as the hospital were useless, we have since changed & it's settled me more now he's being looked after, but i do still feel anxious. We are lucky, my friend has bowel cancer, has been battling for 4 years & now has a terminal diagnosis. I know I'd rather be in our situation but my sister in law had lung cancer last year & had op & because caught it really early she had no follow-up treatment & was right as rain in 2 months, she was really dramatic over it & everyone rallied round her, something that never happened with us at any point from hubby's family & I'll admit I was jealous, she got to have it cut out & carry on & ours was still here. Not that I'd wish worse on her but no one seems to realise it's always gonna be here. We do get on with life, we don't put things off & I think we have a better life for changing our mindset. We know he'll be here for a long time but why put off what you can do today, it's cost me a lot of money as we grasp life & live amazing experiences. I still have wobbles, particularly if there is an odd blood result, hubby on the other hand just shrugs his shoulders & carries on. Either way to deal is fine, but I'd say it's early days, it's ok to be anxious, don't let it take over your life but gain knowledge on your condition. I found it helpful to have hubbys past blood tests to see how things have been. He didn't have a blood test in his life till 2 years before diagnosis so not much to go on but can see he had MPN then, can see his levels haven't risen dramatically in that time so was reassuring. Knowledge is power & can help you make informed decisions. I'm loving the fact that with lockdown we get blood results before speak to haemo as I can analyse them beforehand. If your anxiety becomes overwhelming please talk to someone professionally. Stay safe x
Yes, I think he has an amazing attitude. I do find I'm generally more laid back about life than I use to be, I think it's because it's given me such a kicking that I've come out fighting. It really rocked me, brought it out that nothing us guaranteed, therefore have to live for the moment. But we all react to things differently which is why we are unique, it's just not letting it take control.
I've tried yoga, to chill & slow me down, I'm not laid back enough for it I've found yet others swear by it. Find what works & don't feel bad for sometimes worrying excessively. It's not a bad thing x
Not easy to do but my therapist always tells me not to catastrophize (simply put not to imagine the worst outcome.)This is something l tend to do not just with Health but with many things in life
Knowing l do this catastrophizing and learning how to address it has helped me immensely with managing all kinds of anxieties about things that have not happened and may never happen. It’s not an easy state to achieve but therapy definitely helps particularly when l feel overwhelmed. Fortunately for me therapy is free in Germany but many self help options are available
But equally the value of support being able to check things out on this forum and with friends medical team etc is also extremely beneficial
Hello, I was diagnosed with ET Jak2 positive in 2000, I was 37 years old working full time in a school and a mum of 3 children, the youngest was aged 11 at that time. I originally went to my GP with fatigue and stomach discomfort, because I didn't feel I was being listened to I became depressed and was prescribed antidepressants. The fatigue continued and I had a few incidents of losing my eye sight followed by really bad headaches and only then did I have a blood test that showed raised platelets. I have been prescribed Hydroxycarbamide and taken it for 20 years, it lowers the platelets, however I still struggle with fatigue. My greatest fear was not being there to raise my children, I now have grandchildren. Hope sharing my experience helps you in some way. Take care 🙂
It helps a great deal! Thank you so much! Your symptoms sounded like mine. I rarely have issues, but vision, tiredness and headaches are about the most of it. I consider myself lucky 99.9% of the time, but i gotta work on that remaing % so the anxiety doesn't creep back in! Thank you for sharing your story!
My wife has a photo from over twenty five years ago showing an enlarged spleen! Which ruptured nearly 26 months ago. Which was the first indication that anything was wrong. She was diagnosed with MF shortly after. If she progressed from ET which is what the consultant thinks, this means she has had ET prior to MF for upwards of 25 years, without any problems, though when we think back there were some things that now make sense, such as bluey purple toes when cold, a few headaches, falling asleep of an evening, in the years prior to diagnosis.
So don't worry too much.
It's not a terrible prognosis right away! So long as the hydroxy carbamide and anagrelide keep working she is fine, the consultant hematologist seems very happy with her, and expects many years for her, into her eighties at least. Which is more years than many get without an mpn.
So try and put the downside of having an mpn to the back of your mind and get on with life and enjoy it.😁
Hi, I was diagnosed with ET at 40 following a blood test for something else. I wanted to reply as many people are not on treatment and I would like to reassure you that with a good haematologist treatment if required can be well managed and facilitate your normal life. When diagnosed I felt so scared and anxious too, information was not as good as it is today. I didn’t tell many people initially which was a mistake. The unknown was so scary. Let me reassure you that talking to people helps, staying fit or getting fit helps energy levels and stops you focussing on the potential negatives. I am now nearly 57 and am well and stable on my Anagrelide treatment. I started on aspirin only for three years and then had to progress to hydroxyurea, which suited me for 10 years. We are all different, and I found that I needed to let any treatment settle down before my energy levels stabilised. It’s a balancing act on the amount of dosage, and when right you feel less tired than if not on any treatment- with my body actively overproducing platelets I used to feel so tired pre treatment, and once the treatment kicked in it reduced that. I took up yoga as well to get some slow down Me time from work etc. Life didn’t end and I feel better now than I did then. I also learned to listen to my body and pace myself better rather than rush around and then become exhausted. I always had a reasonable diet and I do eat lots of fresh unprocessed food, but I enjoy a glass of wine and treats.
I worried so much and was so obsessed with it in my first year post diagnosis, that it made me so anxious and tearful. It was not a good place, and really I didn’t need to be so worried. Once I talked to people about it and sorted out my head, I felt able to live every day properly again and appreciate what I have. Don’t waste time like I did, take the approach of enjoying and appreciating what you have and live in the moment. Best of luck .
Thank you so much! I'm working on it, I really am! Every single time I start to panic i get so angry at myself for wasting days on worry when I feel fine! I'm worried about losing out on my kids life, but that's exactly what the anxiety is doing to me. Makes no sense, but mentally it's so hard to just STOP.
Something I picked up in therapy years ago that might be helpful to you - when you catch your inner narrative being tough on you, frustrated & angry stand in front of a mirror, look at yourself and say
“Stop being so mean to my best friend. She’s doing the best she can and deserves love and kindness”
(doesn’t have to be said aloud if you feel a bit mad doing that 🤣)
If that feels ok for you, take it a step further - what would you say to your best friend if they were in your shoes? Say the same to yourself!
Hi!! I was diagnosed with ET Jak2 in March this year. I feel exactly the same way as you. Fter the shock of diagnosis of course. I'm trundling along with my life and then out of the blue I'm like I have cancer, I want to be here for my daughter and family, what if it progresses. Then I try and calm myself wit what I have learnt so far from the good folk here. Another anxiety for me is the next three month appointment. Are my bloods, going to be worse platelets up, have I progressed or been misdiagnosed. For now my way of dealing is controlling the things I can. Excerise- I run, lost a bit of excess weight, eats as clean as I can and take supplements that might help me now or further down the line. I also research and read alot and hope that a cure or at least a treatment than halt progession is not to far down the line. Know you are not on your own on how you feel. X
Hi Jenn, I am experimenting with a number of things at the moment. I have no idea if they work or help but it is what I'm trying presently. I'm taking Q10, Apple Cider Vinegar, ginger, Oregano, Super Canosine, Magnesium, Boron, Omega 3, Tumeric/Cumerin, Bio kult and garlic. I have just hired a nutritionist so this may change and I only take these from my own research I was diagnosed in March. So if u are planning anything talk to your consultant/ Haematologist first. I plan on start taking Vit C again and have NAC and PQQ but have not started these at present. I have to say though just as important has been my dietary changes, med/anti inflammatory diet. No sugar, clean eating and I run. Hope this helps. Its great to have this group to discuss, discover and think about the best way forward. Take care.
I was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. I am still alive and kicking! I have lead a rich satisfying life and continue to do so. Sure, there have been some challenges and issues, particularly in the last couple of years. However, life is still good and there is treatment available when issue do crop up. I am fortunate to have a relatively indolent form of a MPN. That along with a proper (individualized) treatment plan goes a long way to a high-quality life.
Regarding the anxiety - been there and done that. Got the t-shirt. Burned the t-shirt. There are definitely things you can do about anxiety. Bear in mind, as Frank Herbert noted "Fear is the mind killer." You ultimately have to make a choice whether the fear/anxiety is going to manage you or whether you are going to manage the fear/anxiety. You do have to find ways that work for you to accomplish this. What works for me:
1. Support from my family, friends, and faith community.
2. This forum (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.
Do please know that you can expect to lead a normal life-span and that whatever challenges you may face with ET (hopefully few) you will be able to manage them. If you like to read, I would suggest "Make Your Bed" by Adm. William McRaven. It is something that can really apply.
All the best to you.
Number 8 can be a bit tough. It is why number 9 is particularly important. You do sometimes have to be willing to say "You are fired." Have done so with a couple of providers. Very important to remember, the doc works for you not the other way around. The doc works on your behalf, advising, recommending and writing orders. You as the patient make all decisions regarding your treatment and who has the privilege of providing it. Some docs lose sight of that. They sometimes need to be reminded and/or replaced. Having said that, I have found some wonderful providers, who not are not only knowledgeable in the science of medicine, but gifted at the art of healing as well. They are a treasure and I am blessed to have them on my care team.
All the best to you in finding the same.
Must say that any degree of wisdom was mostly learned by making mistakes - AKA the hard way. I learned that if you do not make your goals and preferences clear and insist they be honored, some docs will just substitute their own without caring what it is you actually want. Thankfully, there are many providers who genuinely care and do listen to and respect their patients.
I have a fantastic PCP who is very caring and truly gifted at the art of healing. I started seeing an Integrative/Functional medicine specialist who is likewise gifted. My MPN care is split between two providers. I have a local hematologist who is a terrific doc, but not a MPN expert. He even says so. He also actually takes time and talks to me and listens to what I have to say. I also have a MPN expert I see periodically who is based out of the MPN Clinic at Johns Hopkins Hospital. Just getting to know him as he replaced my retired MPN doc. He likewise seems really good. I have a big pile of other "ologists" for various and sundry issues. Some are better than others, but they will all honor my rights as a patient. There have been some that did not meet standards. They were fired.
Glad to hear that you do assert yourself. It can be a challenge to find the kind of providers you want involved in your care. Sometimes you do have to travel to find the quality of care you want to receive. At the end of the day, it is worth it.
All the best to you,
Thank you so much!! i hope to get to the positive attitude you have! I'm there most days, but every once in a while the anxiety creeps in and i get so negative and fearful! I appreciate all your words. I also already ordered the book you mentioned! excited to get started reading it! Thank you so much!
There is plenty you can do to manage the anxiety. I am sure you will find more options to manage it effectively.
Do bear in mind that anxiety and fear are normal biological responses to threat. Effects are both neurological and biochemical. It goes back to when we lived in caves. When a saber-tooth tiger is stalking you, anxiety/fear are both normal and adaptive. The response helps you to survive When you experience these feelings/responses in the absence of a saber-tooth tiger about to pounce, then it is a problem. There are both biological and psychological triggers for this normal response that is happening when it should not be occurring (note absence of saber-tooth tigers or other similar threats).
Understanding the biology/psychology of anxiety helps to manage it. Key concepts include sympathetic/parasympathetic nervous system, vagus nerve activity. cortisol-catecholamines-cytokines impact on the brain. What happened to me is that severe gastrointestinal inflammation triggered a full blown anxiety disorder. I did not understand what was going on inside my own body despite 30+ years working as a mental health professional. It took me quite a while and a lot of misery to finally understand what was happening and do something about it.
The list of coping strategies above was learned the hard way. I will never let myself go back to where I was before. It has been really critical in the last couple of years when I had a terrible experience with one surgery - triggering reactive thrombocytosis putting me back on chemotherapy, finding out my ET had progressed to PV (and the doc had missed it), heart surgery (successful), and brain tumor surgery (successful). In the coming year I will have a jaw surgery to remove a tumor. knee surgery to deal with complex torn meniscus, and cataract surgery. (I am actually looking forward to the cataract surgery). Using those coping strategies is how I manage it all.
Despite all of the above, I am doing quite well. I am enjoying life and not experiencing undue stress and anxiety. Life is good and I embrace it every day. Sometimes things happen that suck. Sometimes I just have to "Embrace the Suck." That approach works for me.
I do hope you enjoy "Make Your Bed." I find it inspirational and the warrior mentality is something we can apply to battling our MPNs. This approach has really helped me.
All the best to you.
I was 33 In January 2007, I go told I have E.T, after having a blood clot in my brain May 2005.
2018 I have MF.
I’ve been on Aspirin and Hydroxy since then. I take Anagrelide too.
Work part time, anxiety has its good and bad days. (I few more bad days with shielding) but it will get better when I can get back to work and get out.
We all handle things differently, there are no right or wrong ways. I tend to be quite relaxed about it, but when I was diagnosed I was told I had PV and make too many red blood cells. No-one mentioned MPN or Blood Cancer. When I tell people about my complaint I just say I make too many red blood cells, probably may too much light of it. Yes, I was told at the beginning I might need medication in the future and it might progress into other things, but I believe in the future medical science will have advanced and what is a problem today won't be in the future. I don't know what my blood figures are, other than haemacrotit. My haematoligist knows more than me and I have total faith in her. Anxiety, about needles yes, used to be big style. I can remember my first venesection and nearly ran out due to phobia about needles. I'm now ok after 12 years and being jabbed every 3 months. As I say we all react differently and no right or wrong way. Best way is to talk about it. We are all go listeners on here. Take care.
Thank you so much! I appreciate that! It is nice to have a group of people who completely understand the worries and thoughts that come along with a rare diagnosis!
My dr did use the word cancer, but he also said, "Cancer is just a word" so even though I know it's a cancer, i mentally always just say "my wonky blood" I think for whatever reason my mind handles wonky blood better than the cancer word lol.
You don’t say which mpn you have but I hope this may help you not be so anxious
I was diagnosed with my first mpn back in 2003 - essential thrombocythemia and then in jan 2015 with myelofibrosis and I’m still around and not intending to go anywhere soon!!!
It’s easy to start having regrets and worrying about not seeing your children or grandchildren reach their potential and no one has the right to tell you otherwise.
We all have sad days and as you’re so recently diagnosed perhaps once you’ve really accepted the way you are It may become easier to dwell on the here and now and not what can’t be🤔🌹
Take care and keep shielding
Thank you so much! I was diagnosed with triple negative essential thrombocythemia. So far so good. Because of my age (36) and no previous issues with clots etc, I am currenty just on asprin. my platelets hover areound 940,000. my next appointment (first one since diagnoses) is next week!
I'm sorry yours has progressed, but I pray you continue to do well and live a super long, joyful life!
I was diagnosed with PV in May 1983 when I was 37 years young, and was on put on medication and venesection from the start. I was on Hydroxcarbamide, in varying doses until 2013 when I was put on Ruxolitinib because of a change to MF in about 2010.
I will be 74 this year, and still enjoying a busy life, even with the threat of Covid-19!
I drive, bicycle, motorcycle, love walking, and go skiing once a year and go abroad visiting and sightseeing. Life is good, because I try not to think about the peculiar blood and have my 3 monthly check ups and thankfully everything seems stable.
Long may it continue
Best wishes to everybody from Michael
I am so glad you are doing so well! So you have been diagnosed with post PV MF for 10 years? that's amazing! I think i sometimes think MF is a death sentence and that is what terrifies me and I forget that there is treatment for it as well. Hearing stories like yours make me smile, and while I'm sorry any of this is happening to you, I can't help but smile at the positive attitude and outlook. Thank you so much for sharing.
I was officially diagnosed with PV Jak2+ in 2015. Although I had a stroke in 2012 (which was mis-diagnosed as MS)
Leading up to the stroke I hadn't been feeling well since 2009 (after I had H1N1, Swine Flu) My Haem, after looking back over my blood test results has confirmed that the stroke was caused by PV (due to really high HCT) - unfortunately as I moved home and then moved again blood test results between 2009 and 2011 have vanished - although I do have a letter from a Dr in early 2011 saying that results of a blood test 'didn't look right' so advised follow-up tests.
I'm just thankful that PV was diagnosed in the end.
Hi! It’s definitely an unsettling time when you are first diagnosed. I was diagnosed at 20 and that was almost 28 years ago. I only found last year that ET is now termed as a blood cancer and that I am triple negative. I only had medical intervention for the first few years and then decided to pretty much ignore it. (Except when pregnant) Went back to a haemo last year and had another BMB done to check for progression and classification , but all is good so it’s carry on as always!
Fingers crossed you will be the same.
Hi I was diagnosed aged 44 in 2002 . I remember all those worries you have too! I remember how scary it was when I was about to take my first meds. I thought all my hair would fall out. Here I am aged 62 and I’m not bald. You will have some hard times when you feel really tired , but listen to your body and rest up and you will get through it. I would say that if you can make some provision for when you get older and try to stash some money or maybe pay extra pension contributions to support yourself so you can retire earlier than the pension age which will probably go up again after this corona virus has passed. Good luck for the future , enjoy every day And you like I do ,will enjoy your grandchildren in the Future.
I am sure its very normal and healthy to feel anxious. I ve had diagnosed ET for 2 years. I have accepted the condition and feel quite proud its something unusual! It adds a little humour.Please feel in good hands, the hospital team are excellent and always ready to answer questions. This forum is great and we can share any worries.
Remember to eat well, keep as active as you can as movement is good for us.
Lot of helpful tips available and when times are better, great forums to attend.
I do like this forum! When i first got diagnosed I joined a facebook group and honestly it scared me worse! So much negativity I couldn't handle it. I completely understand people needing to vent, but it seemed like ALL negative comments and people progressing. Scared me to death lol. this one seems much more positive!
I think I might have beaten everyone. I've had ET for over 45 years, since I was in my early 20s. In the meantime, I've had two children, gone back to university (which I dropped out of because of the undiagnosed ET), carried on to get my PhD, had a successful 2nd career in academia, and just in the last few years transitioned onto MF. The anxiety does get easier, although changes in diagnosis or blood counts cause a temporary spike. The shielding has really shown me that exercise, eating well, sleeping better, and slowing down a bit really do make a difference to your well being.
I moved my care to a major London teaching hospital and feel much more at ease and that I'm getting the best care possible. Before I felt that I was telling the haematologist what to do.
You've had lots of good advice from the rest of the MPN community. They are very supportive so use them when you need to.
Ruxilitinib has been my life saver. No more side effects from the MF once I got to age 65 and could start on it. Sometimes you have to be prepared to try a series of different drugs before you find the one for you. Everyone tells a different story about their medication experiences. BTW I also had a period of "remission" which lasted 6 year or so when I was completely off the medication.
Hello! I am 43 years and was diagnosed with ET last year. I am struggling so hard to find my way of handling this. Sometimes the anxiety is really bad and sometimes I totally forget that I have got cancer. I feel so lonely with my diagnosis. I would so much like to get in touch with someone my age to have someone to share this experience with.
I'm 45 and was diagnosed 19 years ago. I'm taking aspirin and warfarin but no interferon or hydroxyurea as my platelet count is normal...they're pooling in my spleen instead of in circulation consequently my spleen is pretty enlarged. I have never regarded ET as cancer as that label stresses me and isn't helpful. When I was diagnosed it was referred to as a blood disorder...I prefer that term. Take care.
At the moment covid is worrying me more than anything....away from family and friends and not participating in a normal life..🤨😐
Was diagnosed with PV 12 years ago aged 40 following a work medical. Had no symptoms, so did come as a bit of a shock. Platelets were over 1000 and Haematocrit over 50
I had a young family with 3 children under 5, so really didn’t want to start treatment, that would have any impact on my quality of life, as my wife was also struggling with post natal depression. Fortunately my doctor was understanding and until this year I only had phlebotomies to try and keep it under control
Then due to age and the increase of risk and children now being teenagers, in January I was started on PEG Interferon and although it was a struggle at the start, with the side effects - am now tolerating it ok and blood counts are slowly but surely coming down
Wishing you all the best on your own MPN journey
A lot of ET and PV in this thread - I was hoping to see posts from people with PMF who have rallied- I was diagnosed March 2020 but in hindsight started to have symptoms 12 months prior. I have modified my exercise program drastically and am feeling extremely well with Hb of 97. On watch and wait with 3 monthly blood tests
I was diagnosed with ET Jak 2 positive 12 years ago at age 52, which progressed to MF last year. My hematologist put me on hydroxy right away back then even though my platelets were only around 600. I think, sometimes, I was medicated too soon, because then I got side effects from that. It’s been an interesting journey, but I’ve always tried to live life to the fullest, as best I can. I wish you all the best!
Hi Mamab83... I hear you and I completely understand what your going through. I was diagnosed with PV 2 years ago and I have bouts of anxiety and always the fear of “is today the day”. But then I also realize that I have to just take my days a day at a time and I also think that we have to continue living as we did before diagnosis. For example I am going to continue working and just do things I’ve always done. I really don’t agree with stopping all that because it would feel like I’m sitting back and waiting for something to happen and nothing may happen for 20-30 years or more !! And giving up my regular life would just be living my days as a reminder that I’m not well !!! Not going to do that !! I’m 60 but I would probably have been considered a 40 yr old 60 😁. I always had a dozen things going on at once... I’ve had to slow down because of my fatigue but I still try to do everything I always did and basically gave up some stuff I never wanted to do !! I’m involved with my family business that relies on me (which can be really stressful some days); my kids still rely on me just to be there, (no grandkids) so 60 is really not that much different then 36 in a lot of ways.......But I have a 33 yr old nephew who was diagnosed with PV 4 yrs ago and he tries not to dwell on the fears or anxieties ... he just follows doctors orders and just keeps going with work, a girlfriend and everything else. I know it’s ridiculous and pisses you off when someone tells you “your fine today so just don’t worry about it”.... they have no idea what it is we go through. So the best advice I can give you, if I may, is it’s ok to have those days when your scared, it’s ok to have those days when you look at your kids and wonder; it’s ok to cry; it’s ok not to be ok !!! But it does get easier... I know your wondering how but it really does get easier. What I’ve learned too is that my MPN is not what might get me in the end anyway ! I was an emotional mess for a year after diagnoses... I still go through those emotional roller coasters but it’s not as often or intense as it used to be. Take it one day at a time, don’t let anyone tell you how you should feel and just get on with your days as you always did. I hear you and I feel you! Right now just try to focus on keeping this damn virus away but don’t let it completely absorb you! Go have a ice cream 😁😁🍦🌸🌸