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

@birgitr With your lab results showing a platelet decrease already, that should be an encouraging indication that the HU is working well to meet the goal of 350. Like I mentioned, often doctors will tweak dosages higher or lower to get to a balance of ‘just right’ and not taking more than necessary. So hang in there!

You wanted to know my story…well, I’m one of the mentors in the Blood cancer & disorders support group. Though I didn’t have ET, over the last 7 years, my extensive experience with a very aggressive form of leukemia and the subsequent bone marrow transplant fueled my deep interest in blood cancers. I know what it’s like to get hit out of the blue with a blood/bone marrow related issue! At the time, I didn’t know a soul who’d gone through a similar situation. It’s scary to feel alone. So I’m here sharing information that I’ve gleaned along the way to support others and to offer hope.

What do I make out of this? From my experience with other members diagnosed with ET, it has become my understating that treatment with HU is first-line treatment, manages the condition effectively, generally with few side effects. Some instances, if HU isn’t sufficient, there are other drugs available working through different biological mechanisms. From conversations with others in Connect, most people being treated for their ET go on to live productive lives.

I know this is all so new to you and no one likes the prospect of taking meds long term. If it helps, look at this now as more of a chronic condition such as high blood pressure that you can take meds for and go about your life. Your hematologist will monitor you through routine blood work and if anything changes over the years, then there may be a change in treatment as well. It’s good to learn about your condition but try not to let it define you. ☺️

@birgitr, Crucial things besides transitional meds…exercise, both aerobic and weight lifting, walking outdoors when you can, avoid excess sugar/starches/processed foods, drink plenty of water (room temp is better) to help keep toxins flushed, eat healthy with lean proteins, Greek low fat non-sweetened yogurt, lots of veggies, fruit and whole grains.
Advice from my own hematologists, supplementation isn’t necessary. While some supplements such as ginger, turmeric, green tea, etc., can be helpful with being high in antioxidants or anti-inflammatory properties, they can also act as blood thinners, vasodilators or can lead to organ damage.
There isn’t anything you’ve done that had you developing ET. There was a random mutation of a gene that caused this to happen. So there is nothing you have to abruptly change in your life except to now take a medication which will help keep your platelet level within normal parameters. ☺️

Distraction works wonders to get you through some anxiety of a new diagnosis. What are your favorite activities during the day?

@loribmt I am deeply touched by reading your story although I only have a mundane knowledge about your specific blood cancer I am absolutely aware that you have to deal with a lot and you are doing it in an impressive and brave way. Not to complain and compare -moreover to invest in research and providing other patients with profound insights is truly admirable. Particularly your psychological support is outstanding and remarkable. Thank you for being a mentor. How are you doing today after those years with your desease , maybe you would like to share your daily life, your thoughts and your struggles ( sorry once more for my English, i started learning the language from scratch three years ago , so I am still far away from being able to write without mistakes)?

@loribmt I am trying to keep my mind busy, doing exercises in the gym , going to work ( I am teaching kids in maths) , love to meet friends…Thank you for elaborating on eating habits.Although this isn’t study based I try to focus on healthy eating habits as well. Green tea , nuts , olive oil , garlic , tons of veggies and wild berries are for example vital nutrients i prioritize.

@loribmt What is from your perspective the most common struggle of Et patients? Although the life expectancy is not so bad in comparison to other variants of bloodcancer the worries are impactful.

@jak2mpnpositive
I had ET MPN for many years and now have myelofibrosis due to the JAK2 mutation. I was taking Hydroxyurea, which helped with the platelet count. Now, I am taking JAKAFI that I started after my mylofibrosis diagnosis.

@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?

@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.

@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?

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.