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Had CLL since 1996 & Now NETs-Anyone Else?
I have had CLL since 1996 and during the years had oral chemo 3 times to regulate white blood count, but for about 8 years my count has been stable. In December 2022 after a digestive test showed a random growth in my liver and a biopsy was done Neuroendocrine cancer was determined. I have recently been put on monthly injections of lanreotide. My oncologist told me I was his first patient to have both CLL and NETs and I just wondered if I was that much of a Zebra (the mascot for NETs) or anyone else had experienced both! Share, please!
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@nana120, I added your post to the NETs support group as well as the Blood Cancers support group. I believe @sylvian also has a connection with CLL and has recently been diagnosed with NETs, although I think the CLL was a family member.
Nana, is it possible that you are the unicorn zebra?
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4 ReactionsLeave it to me to be the rarest case ever! I just knew with all these contacts there would be someone who fell into the same category. Fortunately, my CLL has remained stable for several years (recent white count 33), so we can focus on my NETs.
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2 ReactionsPlease tell me what NETs are. I also have had CLL and MGUS for several years now. I’m few months short of 87 years old and the only symptoms I have are tiredness and extreme sleepiness.
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1 ReactionNETs is the acronym for neuroendocrine tumor. See why we prefer not to have to spell it out. My oncologist tells me my CLL is responsible for most of my fatigue from what most of his CLL patients complain of.
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2 ReactionsMy 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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2 ReactionsHello @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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2 ReactionsHello. Thank you for sharing and thank you for the links, I’ll check them out soon. My husband’s is in the ileum, found during a double balloon endoscopy for unexplained bleeding. We are waiting for our first oncological surgeon appointment this week to find out the details of what to expect and how to proceed.
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1 ReactionI hope that you continue to post. In the NETs support group, we have members who are there to support and encourage you on this journey.
Keep posting with questions or concerns.
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