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I have JAK2 ET and MPN: Anyone else have these symptoms?
Hi all,
I've suffered for many years with this MPN disorder, but it seems not many others have the same symptoms, so I'l posting this to see if anyone else has similar symptoms.
First of all, it's important to note that I had lyme disease undiagnosed for 4 years. Right around the time I started to experience symptoms from Lyme disease, my platelets shot up. With that said, I am certain that this is when the JAK2 was triggered. However, it took my another 9 years to be diagnosed with JAK2, ET MPN. My platelets are currently around 890. I am 40 years old. With a recent pregnancy, my platelets went down into normal range and I felt AMAZING!
Symptoms that I experience: Very red (almost purple) feet when sitting too long. This is not comfortable.
Upon sitting too long at a desk, typically in front of a computer, if it's consistent for several weeks, I start to feel as though I am going to die. There is no other way to explain it. It's as if my blood is stagnet. It's VERY uncomfortable. The only way for me to feel better is with exercise and continued movement.
I've had a hematologist tell me my symptoms aren't related to my MPN and I've had one tell me they are. It's very frustrating.
Does anyone else have any similar symptoms?
Thank you.
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@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.
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3 Reactions@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.
@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.
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5 Reactions@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)?
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6 Reactions@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?
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4 Reactions@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. ☺️
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6 Reactions@birgitr to cardio work out 3 days a week and eat as a diabetic with my wife. Have never ate fast foods per se but occasionally wander. Worked hard and played hard prior to diagnosis and have kept up to the best I can, bad knees and back hinder my physical abilities..
I’m of Italian descent so you can imagine my dietary habits…
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5 Reactions@emd64 I really admire your approach to stay calm and focus on consistently taking your meds👍. And have you ever thought about alternative ways to battle the desease? Eating habits or specific sportactivities or is this naive to think that there is a possibility to influence the clone?
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1 Reaction@birgitr no to interferon as long as the HU is working I’m staying with it, I learned to get over the diagnosis very easily as my father had PV another MPN and first dealt with his issues, unfortunately he also had Bone Cancer and left us too early. Although I was assured I was not at risk 10 years later I developed my MPN, Drs say it’s not hereditary but is genetically related.
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4 Reactions@loribmt Are there any other crucial things that you can advise beside traditional meds?
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