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Diagnosed with asymptomatic CLL 6 years ago: Starting to have symptoms

Blood Cancers & Disorders | Last Active: Apr 15, 2023 | Replies (29)
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@tatayababa

Thank you for taking the time to respond. Very much appreciated. My daughter was diagnosed with POT 1 gene last year; she has had melenoma, thyroid Cancer and lympohoma...she asked me my husband and our son to get tested; 1 have the PoT 1 gene; so i have been going for testing heart, eyes have been done; all good there; i had a mammogram Dec 29/22; discovered enlarged lymph nodes in both axillas; MRI and this a.m CT scan; march 10 i see the hematologist for results of CT and blood work; so scared of what they will find on the CT scan

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Lori, Volunteer Mentor | @loribmt | Feb 20, 2023

Oh golly, you and your family are working through a lot of uncertainties right now. I’m so sorry to hear your daughter is facing 3 cancers. That had to be quite a shock. It’s good that you are all being tested for the POT 1 gene so that there can be a more proactive vigilance with your healthcare.

It sounds like you have a good medical team though, who is following through with essential testing. It’s so normal to be scared of what may show up on the tests. I’ve been there and know exactly how you feel. Test anxiety is awful, isn’t it? On so many levels…

You were completely caught off guard with your daughter’s diagnosis and then recently with your CLL/SLL discovery. There’s a lot coming at you right now. But you’re going to get through this one day at a time.
And you’re not alone in any portion of this…you’ve gained a huge family here with Mayo Connect. Most of us have dealt with some illness or have family members who have. I had my own odyssey with AML, a very aggressive leukemia but I’m now in a durable remission. So I want you to know that no matter what you may face with your results, we are all here for you! March 10 feels like a very long time away so try to stay positive and find rewarding / distracting activities to get you through the next few weeks!

How is your daughter doing with her treatments?

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