JAK2 Mutation - Effects and Questions

To eetap,

1) The JAK2 mutation is typically found either after a clotting event or routine blood work that shows very high platelets or red count and a good physician referring you for additional blood tests with a hematologist. Some people go years before knowing they have the mutation as they don’t have any symptoms or don’t recognize the symptoms.

2) I can’t speak to leukemia but with a Myeloid Proliferative Neoplasm (MPN) such as Polycythemia Vera (PV), or Essential Thrombocythemia (ET), there isn’t yet complete information on what causes them so there are no known proactive measures that you can take. I have ET and only take baby aspirin at this time to keep my blood slippery to help prevent blood clots. If or when I have a blood clot event, have extremely high platelet counts, or am somewhere between the age of 60-65, I will be considered higher risk for clots. I will then start taking Hydroxyurea (low dose oral chemo) or one of the other newer non-chemo medications to prevent a clotting event.

3) With PV, blood letting can be done but it CANNOT be donated. You won’t be able to donate with any confirmed blood cancer.

4) It is quite normal to not have any symptoms with ET or PV and live a normal long life. However, it is interesting that you do not have high blood counts but yet had a clotting event.

Best of luck in your journey of information. I too found it helpful to learn everything I could. Knowledge is power.

Good morning! Just checking in to see how the week in Rochester went for your husband! (And you!). It was the week of pre-transplant testing and I know from experience that can be pretty exhilarating along with a little tiring. 😉Impressive though, isn’t it? Mayo-naised:the blender of medical tests and procedures!
Are you all ready for the long haul? Any last minute things I can help you with?

Hi Lori,
Yes, everything that could be tested was tested. Pretty amazing! Some long days indeed. He did, however, pass all tests. We are back home getting ready for the big move. So much to do! I think we’ve got it though. I can’t believe this is finally happening after waiting so long. Thanks for checking in😊.

I just have to share~~yesterdaywas my 3rd Re-Birth Day! It’s amazing how quickly those 3 years went! There were a couple of challenges along the way but wow, it worked and I’m alive and thriving with my new immune system. I feel as though nothing ever happened and have more energy than ever. Your husband is in excellent hands with the transplant teams at Mayo! I’m happy he has this opportunity for a second chance at life. ☺️

Safe travels to your new home away from home! Rochester or bust! ☺️ Keep me posted! Hugs!

Happy Re-Birthday!!!! It’s hard to believe it. Thank God we have this opportunity. Be well and thank you so much for your positivity. I’ll be in touch.

Good morning! By now you and your husband are back in Rochester. I’m not sure of the timing but his transplant must be coming up soon if he’s not in the midst of it already.
This will be quite an adventure for both of you. Not an easy journey but so worth it on the other side! I’m here for hand-holding anytime. ☺️

Are you all settled into your lodging? How’s your little dog adapting to the new digs?

Good Morning Lori,
Thanks for reaching out. Today is Day+5. The chemo went well and the BMT went well with no immediate side effects. He is now experiencing fatigue and some GI issues, which is to be expected. Trying to manage that as best we can. Appetite fairly good but getting him to drink enough fluids has been challenging. He finds that the protein shakes(Ensure brand) are too sweet and cause heartburn. Time to try others. Were there brands that you preferred over others?
We are settled in pretty much. The days are long but they go so quickly. There is so much information to absorb daily and so much to keep track of. The role of caregiver is not for the faint of heart! I look forward to daily sunrise walks with our dog to get recharged for the day ahead. You never know what the day will bring. I know we are in for a rough couple of weeks coming up. We’re making the best of the “good” parts of each day and are so thankful for all of the encouragement that we have received. It’s very helpful for me to connect with you because you understand and have “been there”.

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.

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.

Thank you. We will try.