I have JAK2 ET and MPN: Anyone else have these symptoms?

@birgitr Oye!! This is where you can now help me!! LOL Math! Cringe!! The mere mention of that subject sets my palms to sweating. 😂 But that does explain why you want to understand the ‘how could this evolve’ finer points of your diagnosis.
My husband is ‘Mr Science’ with a background in chemistry, organic chemistry and math…he’s focused on finite/predictable outcomes such as you’re used to. So when I developed an aggressive blood cancer and went through treatments it was easier for me to cope than for him! Because in a blood cancer nothing is predictable, statistics didn’t always compute, and there were no finite results that he could count on! In my non-linear brain, I was fine with taking each day as it came with whatever ‘fresh hell’ awaited. 😅. He wanted answers. He wanted facts and figures.
When first diagnosed I was admitted to the hospital for 5 weeks. My husband developed a fun rapport with my chemo nurses. They were so sweet. Anyway, every morning when he came to visit me, they would have a printout of all my blood result numbers and hand it to him. That way he could enter everything on a spreadsheet. It helped him make sense of the trends in my blood numbers, what everything meant and if my health was deteriorating or making progress.

I wish you well on your mission to ‘the bright side of life’! You might want to do a search online for Self Affirmations or Positive Affirmations which may help guide you along the journey. The theory behind refocusing thoughts to a more positive pattern is that, with repetition of affirming statements, the brain can form new neural pathways, which create physical connections to these repeated thoughts.
So, by strengthening these pathways it may be easier for the mind to return to positive thinking patterns rather than falling back into negative thinking. Eventually, this may lead to positive mental outcomes. It takes practice. It’s not that I never have negative thoughts. It’s that I only allow myself to dwell briefly on that negative thought and move on! My mantra is Accept, adapt and move on. Hopefully that helps!
Keep me posted on your progress in Happy Land and your ET, ok? 🥰

@loribmt yes I am feeling utterly blessed being part of this community and particularly being accompanied by an expirienced and most importantly so perceptive mentor like you.

What me mostly hit was your ability to let go from your worries and change your attitude towards a more positive and optimistic one. Thank you so much for sharing 🙏🌹Honestly my past mindset resembled your previous one. I have been overthinking things regularly even when the issue itself was from minor priority. It took me most of my adult life to realize what really matters , not to put things on the backburner and learn how to avoid pondering too much .
For this reason is this specific desease for me a new challenge in terms of living a fulfilling meaningful life besides without being defined by the health issues although and particularly no one knows how things a gonna go. Last point is crucial for me to achieve ,because I was always craving for knowing how things could evolve ( maybe this is especially a trait from someone who loves mathematics 🤣🤣, here the result is cristal clear).

Lori, you're a shining light for all of us.

THANK YOU.

@birgitr dear, My goodness, you should have no hesitation using your newly acquired English skills! Talk about impressive. I’d say you’ve mastered the language and express yourself quite eloquently. 🥰. Thank you from the bottom of my heart for your heartfelt response.

I really do try to ‘practice what I preach’. I spent too many of my younger years worried about what if this happened, what if that happened…and none of it ever came to fruition. All that time wasted with worry. Then, later in life, when I actually did face my mortality with leukemia, I dealt with that one day at a time the best I could. Keeping a sense of humor and being as positive as possible throughout.

Changing attitudes doesn’t come over night. It takes practice with daily positive affirmations, switching negative thoughts to positive outcomes, little changes like that. Over a short period of time it becomes natural to have a more genial outlook. ☺️

As for your quesiton about the importance of VAF (variant allele frequency) and the impact on the development of ET…While I’m aware of allele burden definitions and that they may be useful prognostic biomarkers, that way is above my pay-grade. 😅
You have some great questions that warrant answers. So my suggestion is to write these questions down and ask them at your next appointment with your hematologist!

As for life expectancy, we have many members in Connect whom have been diagnosed with ET…from newbies to veterans still living multiple decades later. Each person’s situation is unique to them. So again, longevity questions would be for your doctor to answer.

But if it’s of any consolation, many doctors of members in Connect, including my own hematologist when he and I discussed myeloproliferative neoplasms (such as ET and PV) have anecdotally stated, “The majority of patients pass away with these blood conditions than from them.”
So keeping with my perspective of staying positive and forward focus, I’d say just get about with your life. If something changes, then you’ll deal with it at that time! Your doctor monitors your labs and will watch for trends. Nothing will happen over night.

I did a quick search for all the discussion surrounding ET (essential thrombocythemia) where you can jump into any conversation with other members such as @janemc @nohrt4me @mikecaldwell just to name a few.
Here’s the link to my search: https://connect.mayoclinic.org/search/

Wishing you a lovely week ahead! You mentioned that you teach maths! I expect that you’re a wonderful, well-respected teacher! Sending you a hug!

I don’t have the JAK2 mutation, but I have ET with CALR . (I’m also 66 years old.) I’m recently diagnosed, and my platelets have stabilized just below 700,000. I’m unable to tolerate Hydroxyurea and currently take just aspirin. I have experienced the discolored feet when sitting too long. This has been going on for years, but I couldn’t get any doctor to take me seriously. I have also had that overwhelming feeling of heaviness, although not as intense as yours sounds. I deal with arthritis, but I do feel better when I’m up and moving. I have frequent night sweats and morning headaches.
My most concerning symptom is a constant sore throat. It is not red or sore in the way it gets with a cold or sinus drainage. It feels bruised when I swallow, but I don’t think I have any swollen lymph nodes. I also have a sore and tender scalp that accompanies the sore throat. My hematologist told me ET has no symptoms, but I beg to differ! He is young, and I think I may be one of his first MPN patients. I have another appointment with him next week, and hope to get some answers to the sore throat and maybe a referral to an MPN specialist.

@loribmt Thank you so much for your encouragement and sharing the link to this interview. While reading your story and your particular view on life I was absolutely exhilarated. I particularly perceived real wisdom and exactly this is the kind of attitude I am craving for. To be able to support every single person in the community with so different outcomes and experiences in there cancer journey is remarkably attentive and compassionate. Thank you 🙏 so much for your perspective on life, the importance of cherishing every moment is crucial . The wide range of hobbies you follow up additionally to your engagement in the mayogroup is incredible, I am impressed 🤩.
Yes I am from Germany as you have guessed and honestly it is a pity that i am not able to express my appreciation and thankfulness fully because of the lack of my vocabulary, however I am working on it. Btw can you elaborate on the importance of the VAF level and the the impact of the development of ET and I am interested once more in your opinion about Ropeginterferon. And what do you think how likely it is to that ET progresses into a fibrose and what are the determining factors for that. And what do you think about a realistic life expectancy?

Hi @birgitr. Oh gosh, thank for such a lovely comment. I can assure you, 7 years ago when I was in a battle for my life it never occurred to me that I’d be a mentor for anyone in the future! But, getting through it all, surviving, overcoming…well, it changed me. Throughout the past 7 years, I’ve met so many outstanding and simply amazing people from my medical teams to complete strangers that showed me such compassion, helping to save my life, assisting me at some of the lowest points in my life and offering me hope. So, to be able to offer some encouragement and hope to anyone going through a blood cancer journey or to mentor anyone having a stem cell transplant, it just feels like a privilege. ☺️

Actually, because you asked about my life, a couple of years ago Mayo published a little Spotlight article about me. My life hasn’t changed much since it was written. I still walk many miles daily, exercise, spend several hours in Connect and devote time to watercolor, making journals, sewing, etc.. I’m always busy.
Here’s a link to my little bio.
I’ll take an order of Hope with a side of Mayo, please! - Meet @loribmt
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/ill-take-an-order-of-hope-with-a-side-of-mayo-please/
So I have to ask, since you mentioned learning English…which I’m so impressed you’re taking on, because it’s so complicated…are you from Germany? One of my closest friends and penpal from Germany share’s your name, Birgit.

@joaniech2004 Some patients with a myeloproliferative neoplasm (MPN), such as ET, may not see much of a progression over the years. For others, there can be a change in the bone marrow such as you’re experiencing with having had ET which progressed to myelofibrosis (MF). This can leave a fibrotic scarring to the marrow, impacting its ability to produce healthy blood cells. When this happens, one of the treatment options is a bone marrow transplant.

With the transplant your currently defective bone marrow/immune system, will essentially be replaced with that of a donor. If all goes as intended, your bone marrow will be restored to a healthy state!
It’s done with a donation of blood stem cells. Blood stem cells are specialized cells that mature into either red/white blood cells or platelets. (Those cells are infused similar to a blood transfusion through an IV. They are not injected into your marrow).
Before that can happen, there is a preconditioning process where you’ll have several days of chemo to wipe your marrow clean. Then the cells are infused through the IV port, and within several days they set up housekeeping in your ‘empty’ marrow. Once engraftment happens, then the new blood cells and the marrow network develop again.

One of my close friends, whom I met almost 7 years ago while we were both having our bone marrow transplants at Mayo, had MF. She and I are both in our 70s, feeling energetic, healthy and enjoying our 2nd changes at life. We live several states apart but stay in touch frequently. Without the transplants we would both be long gone by now. So, while bone marrow transplantation can be risky and challenging, the rewards of a second chance can definitely outweigh the risks.
My personal story and that of many other members in Connect be found in this discussion:
My BMT Story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
When you and your doctor make the decision to proceed with the BMT, that is when the donor search happens. You don’t have to do it yourself, your transplant team takes care of that. Because a BMT is a complex procedure, it’s very important to have this done in a facility where there is a depth of experience such as a larger teaching/research hospital or clinic.
Do you have any specific questions? Is there a timeline your doctor has discussed with you?

@birgitr
I have the same I’m 55 yrs old. Hydrea 500 mg 14 times a week and aspirin 325 every day.
I get fatigue a lot a heavy head with headaches. Not sure if it’s from ET jac 2 or something else. They are still trying to fig. Out my symptoms seeing Nero.

@loribmt
Could you share more information about your experience with the bone marrow transplant? I was diagnosed with myelofibrosis one year ago, but I do not have a donor match. I have met with my hematologist about the possibility of a bone marrow transplant in the future. It seems like a very risky procedure. If you don't mind sharing, what was it like for you?