JAK2 Mutation - Effects and Questions

Welcome @iis. Are you asking whether the Jak2 mutation is hereditary?

Here's more information that you might find helpful
- What Is the JAK2 Gene? https://www.healthline.com/health/myelofibrosis/what-is-the-jak2-gene

Hello, I have a few questions, recently, I was diagnosed with Jak2. Unlikely but still fairly possible. The reason I am posting here is because my father also received a positive result when he took the jak 2 test a year back. Has anybody else experienced this? Thanks

Hi Lori,
Doing ok. I’m just taking things a day at a time. He is doing a little better every day. Eating hasn’t been a problem for him but getting enough fluids in continues to be a challenge. We are working on that. He has had extreme fatigue but is slowly coming out of it. He’s now more willing to take short walks, which is great. No GVHD either. We celebrate every milestone😊.

with pv NO when they take your blood it cannot be donated. I asked the oncologist about stem cell andwas told it might kill me and pv is associatedwith jak2.

Good morning! By my reckoning it’s Day 25 post transplant for your husband. I just happened to run across my journal entry for my Day 25 this morning while rummaging through documents on my computer. Amazing how life has changed since then. It’s always interesting to read what I wrote along that journey, to watch the progress!

I hope your husband is gaining strenth now and feeling much better than a couple of weeks ago. I’m expecting his appetite has improved a little and he’s getting more food down. Has he been walking around the neighborhoods of Rochester?
Caregiving for a SCT patient is a challenge. Especially getting us to eat! LOL. How are you holding up? ☺️

I have Jak2 diagnosed in 2019. Was stationed at New River for three years. VA doctor and private doctot say probably caused by Lejuene water. VA denied claim, Also have kidney disease, also denied!

Knowledge is everything

I find your post informative because I was diagnosed with MGUS in 2019. It’s a blood disorder that at present looks like it’s progressing into Non Hodgkin’s Lymphoma or worse Waldenstrom Macroglobulemia. A number of the issues with. JAK 2 are present in my bloodwork too. My B cells are mutated causing a drop in my red blood cells and platelets too. I’ve been anemic for over 3 years, longer than when they found I had MGUS. In researching JAK 2, I realized that the 5 blood clots between November 2021 and March 2022 may be triggered by undetected JAK 2. The first clot was the worst, it ended up in my right lung as a very serious Pulmonary Embolism. Number 3 blood clot tried to block my stent in the left atrial chamber and almost killed me. I have bloodwork scheduled for November, think I ask my Oncologist to add a JAK 2 test as well besides my cancer screening. Thanks for giving information I can and will use. Becky1024

Thank you. We will try.

Day +5! 😀 Almost one week with those new cells finding a home in your husband’s squeaky clean bone marrow! By the end of next week or so, they should be setting up ‘housekeeping’ and he’ll start feeling a whole lot better.

However, this next week could be his least comfortable, just to give you a heads up. His blood numbers will continue to drop from the side effects of the conditioning chemo.
As those numbers fall to the neutropenic stage he will be very vulnerable to infections so daily temp checks are important. It isn’t unusual to be incredibly tired and possibly having a few more issues with mouth sores and tummy issues. Don’t wait to let the team know in Station 94 if anything seems out of the ordinary. They will get him re-admitted ASAP if you have any concerns.
I know he’s checked daily so they’ll keep an eye on things. Does he return for infusions of the anti-fungal and magnesium daily?
(As a side note: when he needs to switch to oral magnesium, have him try Magnesium Glycinate. It doesn’t cause tummy issues. Ask his pharmacist. Do you have Gabe? LOL He’ll remember me! 😂)

When your husband feels his absolute lowest, amazingly, usually the next day, those magic white cells have regenerated enough to have him feeling like a switch flipped on! Engraftment! And the recovery begins. It’s a slow and progressive for the next few months, but the first 2 weeks are generally the hardest.

I couldn’t drink those Ensure shakes either. So many people loved them but ugh, I couldn’t get any of them down. But the Ensure juice drinks weren’t too bad. At least they weren’t thick and I could drink them down fairly quickly. I think it was like an apple juice but had the protein power and nutrients. I had the hardest time those first couple of weeks with liquids too. I kept a Brita pitcher on the counter with room temp water. That helped. I couldn’t handle any ice water or chips. But lukewarm seemed to be easier going down and in my stomach. I failed miserably those first 2 weeks to get in the required water amounts. Some days I felt lucky to get down 8 ounces.

You’re so right, every day is a new level of excitement. 😅 I still maintain that we Chimera’s need to keep a sense of humor and sense of adventure! Encourage your husband to hang in there! It does get better.

It’s a real challenge being the caregiver. My heart goes out to you as I know this is not an easy labor of love. However it’s most likely the most amazing journey you and your husband have ever been on together! You’ll both have a deeper appreciation for each other and it’s a true test of your mettle!
My husband was a rock for me. Always encouraging me to eat, drink, helped me walk, etc. But I could see the stress take it’s silent toll on him with all the worry. He’d make me food and then I couldn’t eat, lie awake when he should have been sleeping…you know, you’re going through that right now. Make sure you do get your rest, take moments for yourself while he’s sleeping. If he’s at the clinic and you’re waiting, stroll around to look at the artwork in the foyers when it’s super hot like today, the gift shops are fun, the mall is right there.
Practice some mindful breathing. That is a big stress reliever too. I’m sure it helps having your little dog there for a much needed, pacifying fur fix.

Don’t hesitate to reach out any time. I really have been there, done that and bought the shirt! LOL. It says, Mayo Clinic Strong! Stay cool today, it’s another scorcher.