JAK2 Mutation - Effects and Questions

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

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

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? ☺️

Thank you. We will try.

Have you filed a lawsuit claim with the VA yet? You may be entitled to medical benefits and if your hematologist/oncologist writes a nexus letter stating that they believe your PV and JAK2 gene mutation was caused by exposure to the contaminated water at Camp LeJeune you may get disability benefits from the VA. I was a Marine stationed at Camp LeJeune and developed MDS/MPN overlap and I was awarded a 100% disability rating from the VA. You should go to the VA.gov website and check out benefits for spouses and dependents who lived at Camp LeJuene.
Good luck.

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

I didn’t like Ensure or other protein drinks either when I had my SCT. It took a long time for my tastebuds to adjust to sugar. I was drinking milk to get liquids and protein, but I know some people don’t like plain milk. Eventually, I started drinking Starbucks mocha drinks that come in little jars. These drinks were too sweet for me, so I mixed them with milk. I was doing this when my tastebuds we’re starting to recover, so I am not sure if this will work for your husband now.