JAK2 Mutation - Effects and Questions

Hi, Just wanted to provide an update. We are going to Rochester next week for extensive testing to see if my husband will be able to handle the chemo and BMT. Home for a week and then back to Rochester to place port, 5 days of chemo, then BMT on July 14. Here we go!

Oh wow, here we go, huh?! That will be an ambitious week. I remember looking at my portal filled with all those appointments and wondered how I’d get through the week Didn’t they know I was an old woman with cancer? 😅 Three years ago this week, in fact, was my pre-BMT testing with my transplant being June 28. Time flies!

But it all runs like clockwork! Your husband is about to be Mayo-naised, as we call that experience in my family. Mayo is a place like no other and he can’t be in better hands. I’m here for you any time there are questions or concerns! Don’t hesitate to contact me. ☺️

Make sure you bring snacks, water and iPad, or books to read while waiting during the appointments. The days are a little long for both of you.

I know you have a nice rental for the long stay, but are you nearby the clinic for this week? Do you have any last minute questions?

Yes, at Centerstone Plaza. I stayed there for his splenectomy. Although they provide free shuttle service, I found I could walk to Methodist ( once I figured out the lay of the land) in 10 minutes. I highly recommend this hotel as an option for lodging.
Did you use a shower chair during your 100 days? I thought I’d also bring a wheeled walker…

Oh good, I’m glad you’re near the clinic. That helps. And Rochester is such a lovely city for a daily stroll. ☺️

I didn’t use a shower stool but that’s a very good idea. Those first couple weeks your husband will be feeling very weak. That’s normal, just so you are aware.
He’ll also need to apply a protective covering over his port before showering, called Aqua Guard. (This will all be talked about during this week coming up in the educational classes. All of the products can be bought at the Mayo Clinic store near the cafeteria)
Those early weeks, just putting that covering over the port took all my strength and so, standing to take the shower was exhausting! A shower stool would be very helpful!

A wheeled walker is another great idea for stability and will be very handy for your house and for visits to the clinic. As he regains his stamina and you take walks outside that will allow him to build up some muscle strength again without worrying about falling and he can stop to rest without leaning on a tree. ☺️

Again, those first couple weeks, with the weakness he’ll be experiencing, he’ll might also need a wheel chair. As you’ve seen at the Clinic, they are everywhere! They are yours to use during the duration of your husband’s stay in Rochester and can be taken back and forth from the clinic. But the wheeled walker, if it has a seat will be perfect!

I wish you both the best during this time. It’s a journey like no other. It’s a second chance at life and well worth the effort during the trek.

Hi, my Mom was diagnosed with Polycythemia Vera after her labs went crazy. They did not find the JAK2 mutation until that point. Although looking back a lot of the side effects she has had over the years from the polycythemia Vera and mutated JAK2 that she was mis diagnosed with now made sense. She suffers from severe itching and feeling like ants on her if she takes a shower. Even a sponge bath does it. She was diagnosed with peripheral neuropathy years ago and her labs were not crazy then. But it is the same kind of side effects from the polycythemia Vera. Unfortunately you can’t get rid of polycythemia Vera. She has to take a chemo pills 1500mg daily of hydrea to keep her blood from getting too thick. When her numbers are high the remove blood from her to try to lower it. This blood cancer can turn into acute leukemia at any point. We do monthly blood checks. This is a condition that you can have for some time before it shows symptoms. She started with feeling foggy and just not feeling right. That prompted us getting labs. All of this came to light after she almost died from a bowel rupture and almost died. She spent 32 days in the hospital she has a colostomy now and two huge hernias around that. Just as she was getting better from that was when we found out about the polycythemia Vera and JAK2.

Can’t think of a more fabulous place to be for uplifting healing. There is much art to discover. Stop at each floor and get out to discover ethnic art near the elevators, glass art illuminated near the big windows, the large Miro prints near where your husband will check in for blood testing, Chinese Imperial Ceramics collection in display cases on the way to that lab.
May both of you allow yourselves to observe and appreciate this in depth.
And you won’t starve. There is a good cafeteria, and other places to eat in other non-Mayo establishments nearby.

Following the guidance of Mayo’s travel helper, ($25 extra) I stayed on the consierge floor of one of two hotels which have them. It was interesting to get acquainted with others in these more intimate spaces during included breakfasts and dinners. When I needed to stay longer than planned, using their travel helper meant Delta could not charge me extra to flight dates.

Wishing both of you well in your husband’s healing adventure.

Whoops. Sorry. Left out a word. Meant to say Delta could not charge me extra to CHANGE flight dates.

Thank you. Yes we have admired the art. I love the idea of stopping at each floor…like visiting an art museum😊

I am so sorry to hear about your mom’s diagnosis. I know the uncertainty about how her disease will progress must be very stressful for you and your mom! I had AML six years ago, so I understand what it’s like living so close to death and not knowing how everything will turn out.

What plan of action is her hematologist proposing? Is she being treated at a major cancer clinic/hospital? My area doctors couldn’t treat my AML and I had to go to a hospital 3,5 hours away. Make sure she is treated by experts in hematology/oncology!

@ettap, have your hematologist refer you to an MPN specialist who can better guide you to the treatments best suited to you.