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audra (@ajnaudra)

Carcinoid Cancer and working

Neuroendocrine Tumors (NETs) | Last Active: Jul 31, 2018 | Replies (32)

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@tresjur

Hello Audra,

Let me introduce myself….I am Mary, and was diagnosed with Carcinoid Syndrome (with liver mets) in late 2008. I, too, live in Michigan in a sub near Detroit and I’m entering my 10th year of living with this disease. To date, I have had no surgeries and my only treatment is the Sandostation injection every 28 days. Like you, I occasionally experience pain at the injection site, but when it happens it only lasts 2-3 days. I was told a tylenol and cold press at the site would help, but so far I’ve just tolerate the pain until it passes.

After diagnosis, I felt a loss and had no idea where to turn for additional information. Because Carcinoid is a rare disease, I also felt alone and until recently never met another person living with it. Over the years I’ve seen more available resources and information on neuroendocrine tumors. Support groups have been very beneficial in supplying information and feeling of camaraderie. Michigan’s Carcinoid Support is headed by Dave Vickery in Grand Rapids. Mr. Vickery has been living with Carcinoid for 20 or more years has is a great source for information and what is new on the horizon. If you haven’t done so, please contact him and get on his mailing list – dave.vickery2008@gmail.com.

The Sandostatin has help tremendously with my bouts of diarrhea, but I ocassionally have episodes of flushing. I just has the Sandostation increased and since then I have not had another flushing episode. Last year a new drug was approved, Xermelo, for people who still have diarrhea issues even with the sandostatin injections. You may want to look into this and discuss it with your doctor.

Don’t give up on the SSA benefits. I understand it is really difficult at this time for anyone to get approved but please keep at it. Stress and worry doesn’t help with this disease but from my own experience, I know, it is hard to to worry and stress. I deal with cancer and heart disease, among other things, at at times it is overwhelming.

Stay hopeful and prayerful…..stay in touch and do your due diligence in finding out all you can about this journey you are now traveling.

Blessings,
Mary

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Replies to "Hello Audra, Let me introduce myself....I am Mary, and was diagnosed with Carcinoid Syndrome (with liver..."

Mary,
Thank you so much for reaching out and providing this info. I just emailed Dave today and hope to touch base with him as well. I have read tons of info via online sites. I feel most of it is outdated as it does seem people afflicted with this disease are living longer lives. Wonderful to hear! Please feel free to reach out any time and chat with me. I just looked up Xermelo and they even have carcinoid friendly recipes! Yaaaay!