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ET with Jak2 and allergies/fatigue

Blood Cancers & Disorders | Last Active: 13 hours ago | Replies (17)

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Profile picture for mumblipeg @mumblipeg

I, too have found that I'm so very tired a lot of the time. I have JAK 2, with ASXL1 and TET2 mutations and take HU every other day (at my insistence) and have lost lots of hair with the texture of what I now have frizzy and thin. I get easily depressed. But here's what changed all of that: My husband had an emergency colon resection a month ago due to a complete blockage which showed adenocarcinoma and due to complications with the resection, he had to have an ileostomy pouch. We both hope they removed it all of the cancer but we'll be visiting with MY Oncologist in August. We have to wait until his ileostomy is reversed in a few weeks and he has healed from that. I have become the only one who can lift, mow, drive, take care of our home and yard and change his ostomy pouches every 4 or 5 days? He has lost 20 lbs and I have lost 5 due to the change in our eating habits and of course-stress. I found out this: I can deal with my blood cancer. I am grateful that HU works to lower my platelets. I am strong enough to do what I need to do and I can be a support to my husband in his trial. Yes, I get tired especially in the afternoon, so we both retire early every night. He is awake every couple hours to drain his ileostomy pouch and I am checking on him every 2 hours as well, hoping the pouch isn't leaking and that he can actually catch more than an hour of sleep. Each day now is a gift. Each day I am renewed in ways I thought impossible. I am stronger than I thought and can do more than I thought I could and still handle ET and Hydroxurea. My mindset has definitely shifted to doing the best I can in spite of things I can't control.

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@mumblipeg

You are a ROCK STAR!!! I salute you!

ET is not a walk in the park, but your experience reminds us, other things are much worse.

Sending love and prayers for your husband, and for his extraordinary wife.