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

I also have ET MPN with the TET2 mutation. I find that if I’m sitting or standing for too long I have what I call “start up pain” my joints become very stiff and it takes a minute or so of moving around to lessen the pain and not look like I am 102 instead of 52. I get the numbness and tingling in my hands, feet and legs. My hands and feet also get ice cold & I bruise easily. I was just diagnosed 2 months ago after 2 years of doctoring and testing to find the cause of my all over joint pain. My oncologist says he doesn’t know what is causing those symptoms but working as a CMA for a general surgery dept at a small hospital, these symptoms make my day very difficult. The fatigue is horrendous and I struggle to accomplish much of anything after work when I get home. All my doctor suggests is baby aspirin and Aleve. I take no other meds at all (other than for my blood pressure).

I was diagnosed with JAK2 in early 2021. Taking the drug hydrea has put everything (RBC, WBC, and platelets) back in balance. A bone marrow biopsy revealed that i was also experiencing scarring in my bone marrow - it was in overdrive which is conducive to a 1-3 year life span. So the Leukemia & Lymphoma Society <InformationSupport@e.lls.org> put me in contact with an expert at the OU Stephenson Cancer Center.
Currently I'm attending the Oklahoma Cancer Specialists and Research Institute (OCSRI) and in September 2022 started seeing the OU Stephenson Cancer Center in OKC - comfortably, the two organizations communicate with each other on patients so now i have two sets of eyes monitoring my situation.
Basically, i get blood pulled and reported on every 3 months. Everything has been in harmony for 15 months now. There are back door solutions should hydrea not continue to work. I would never have known about this problem had i not routinely have my blood pulled for analysis because of a testosterone issue. Hope this helps.

Is TET2 a new driver mutation? All I have heard of is JAK2, CALR, and MPL. I have ET-CALR. Ditto on the fatigue, though hydroxyurea helped with that. Hands and feet are often burning hot or ice cold.

However, I am 68 and also have heart valve issues, so it's hard to know the root cause of it all.

TET2 is a gene mutation that was found during my bone marrow biopsy. They currently do not want to try Hydroxyurea with me until my genetic testing is completed. If this mutation is genetic the odds of it mutating to leukemia on the Hydroxyurea is very high. I do not have valve issues but I do have a cardiac history, which makes me a bit nervous with this new diagnosis of ET.

Thanks. New to me. My hematologist prescribes hydroxyurea as first-line drug when indicated by IPSET guidelines (driver mutation, age, clot history).

I know that the leukemia-hydroxyurea link has been studied, debated, and argued for a long time. Is new research showing that the TET2 mutation triggers progression to AML when the patient is on hydroxy?

Just thinking about whether it's worth it to ask about more genetic testing at my next visit. I'm 68, insurance would not cover Pegasys, so maybe moot for me.

That is what my oncologist was concerned with, he seems to be under impression that it would/could happen quickly if it is a genetic mutation.
They ordered my test through Invitae. It might be worth looking into. I was told currently I need to do lab draws every 3 months and if I go on Hydroxy then it would be every three weeks. My head is in a constant spin not knowing which way to turn.

Hello. I was diagnosed with ET, CAL-R back in July. It was discovered in a routine CBC to check my cholesterol. My platelet count was off the charts...2800. All the blood tests, bone marrow biopsies, etc. combined with other symptoms and more tests discovered aVWD (Acquired Von Willebrand Disease) as well. Another RARE card to draw. Counter intuitively, I am not at risk for clotting but just the opposite. Strange to think I was diagnosed with a disorder that causes clotting issues yet I am at risk for bleeding out. I am also taking Hydrea (1500mg daily and I weigh 105 pounds) which has lowered my platelets below 1000 but probably won't reach normal range because my wbc have dropped as well. We still haven't quite found the right balance of meds but hopefully soon. Blood draws every two weeks. Fortunately my aVWD is actually acquired vs. genetic and I didn't pass along to my kids. Still not feeling lucky with two rare conditions. I have yet to meet someone with ET and aVWD. Exercise does help...clears my head and gives me a sense of control in a world where I don't have control parts of my own health. Two chronic disorders with lifelong chemo drugs. Always trying to stay positive even when I question how and why.

You gotta hang in there - are you with a support group such as The Leukemia & Lymphoma Society, 3 International Drive, Suite 200, Rye Brook, NY, 10573?? I'd say exercise more, but that is a balancing act as well. If you over do it, you risk lowering immunity - stay strong.
Always get a second opinion - two sets of eyes are better than one. the group above will direct you through that process. Good folks. Later,
hns

I was diagnosed with ET and I do have the Jak 2 mutation. Leading up to my diagnosis I had elevated platelets and absolute lymphocytes for approx 2 yrs with my referral being “overlooked” multiple times. I had been having mild to moderate headaches daily, extreme fatigue, nausea, dizziness, chest pains, palpitations, pain in my hips and down right leg. I had additional bloodwork done, abdominal ultrasound, and bone scan. The bloodwork is how they found the Jak2 mutation, bone scan was normal, ultrasound showed some lacerations on kidneys, but doc said that was no concern. He cancelled the bone marrow biopsy, told me he wasn’t going to treat me for now and to take a low dose aspirin daily. I’m wondering if I should get a second opinion. I just turned 46, have 6 children, a wonderful husband and want to enjoy as much life as possible without all the side effects. I won’t let them stop me though, we have started a workout routine again and I try to do as much active stuff with the kids as I can! Since starting the aspirin, I have had an increase in the headaches, and almost constant ringing in my ears.

Welcome @emcobb76. To help you connect with others who have essential thrombocythemia (ET), I moved your post to this existing discussion.
- I have JAK2 ET and MPN: Anyone else have these symptoms? https://connect.mayoclinic.org/discussion/jak2-et-and-mpn-symptomscause/

You may also find these related discussion to be helpful:
- JAK2 Mutation, Low Iron and High Platelet count https://connect.mayoclinic.org/discussion/jak-2-mutation-and-high-platelet-count/
- JAK2 Mutation - Effects and Questions https://connect.mayoclinic.org/discussion/jak2-mutation-effects-and-questions/
- Essential Thrombocythemia: Looking for information and support https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/

Here you can connect with members like @claire39 @bluegrasspv2018 @jam5 @dwlowrance @markdi @stevehurlburt @anno @eileen11108 @garyinmo @hariom1961 @cajunqueen, who have the JAK2 gene and essential thrombocytosis (ET).

@emcobb76, I love your attitude and your determination. Are you considering a second opinion at Mayo Clinic?