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Had CLL since 1996 & Now NETs-Anyone Else?

Blood Cancers & Disorders | Last Active: Aug 27, 2023 | Replies (8)
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@take2deepbreaths

My husband was diagnosed 2 years ago with CMML leukemia, rather rare, and in his case, incurable because a bone marrow transplant would probably kill him. We’ve been very grateful for its slow progression and the time we’ve had together, every blood test a horrible spin of the wheel waiting to see changes. We were totally unprepared to find a SI-NET on a colonoscopy this month. Wasn’t exactly the one in a million lottery we hoped to win.

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Teresa, Volunteer Mentor | @hopeful33250 | Aug 27, 2023

Hello @take2deepbreaths and welcome to Mayo Clinic Connect. Yes, I'm sure that finding the SI-NET was not what you were expecting. Most of us who have been diagnosed with NETs were totally unprepared for it!

I've had three surgeries for NETs over a 20-year time period so I understand, just a little, how you and your husband must feel.

I would like to invite you to join the NETs support group here on Mayo Connect. Here is the link to one of the conversations there,
https://connect.mayoclinic.org/discussion/welcome-to-our-new-group/

I have only needed surgery for the NETs in the upper digestive tract. What type of treatment is the doctor considering for your husband's SI-NET?

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