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Apr 19, 2018 · Carcinoid Cancer and working in Neuroendocrine Tumors (NETs)

Hello,
I have been suffering from terrible vertigo. No understanding why but we think it is from lack of sleep at times which is mostly caused from pain due to fibromyalgia.
I did speak with Dave and received information about the support group, unfortunately it is quite a distance from me. He did give me great info though and was great to talk with someone who has loafs of info and many years of experience.
I would also like to share some wonderful news…. a recent CT scan showed some miraculous results! There were 5 tumors in my live and by divine mercy, there are 2 left!!!! My Oncologist is very happy as well. She said she would like to credit the Sandostatin but cannot say that’s what it was. So for now, I feel it is all the wonderful prayers said on my behalf!
Warm regards to all,
Audra

Feb 17, 2018 · Carcinoid Cancer and working in Neuroendocrine Tumors (NETs)

Mollie,
The cram worked like a charm. I can’t thank you enough for the suggestion! Hugs

Feb 17, 2018 · Carcinoid Cancer and working in Neuroendocrine Tumors (NETs)

Thanks Mariana,
Nice to meet you. Would be interested in hearing more!

Feb 15, 2018 · Carcinoid Cancer and working in Neuroendocrine Tumors (NETs)

Hi Mollie,
I asked my Dr yesterday and she wrote a script maybe an hour after she received the request. I will use it today before the injection and let you know how it works out!

Feb 14, 2018 · Carcinoid Cancer and working in Neuroendocrine Tumors (NETs)

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 I feel most of it is outdated as it does seem people afflicted with this disease are living longer lives.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!

Feb 14, 2018 · Carcinoid Cancer and working in Neuroendocrine Tumors (NETs)

Thank you Mollie. I was not aware they could issue a topical anesthetic for this. I get another injection tomorrow so I will ask. Hugs and prayers for you. Please tell me more about your road you have traveled with this disease.

Feb 14, 2018 · Carcinoid Cancer and working in Neuroendocrine Tumors (NETs)

Again, thank you so much for this info Teresa. I’m feeling a bit better knowing I can speak with others afflicted with this disease. Hugs to you!

Feb 13, 2018 · Carcinoid Cancer and working in Neuroendocrine Tumors (NETs)

Thank you Teresa. I live in Port Austin and travel 2 hours to Saginaw to the Covenant Cancer center. I see Dr Binu Malhotra every 6 months but receive Sandostatin every 28 days with bloodwork. I used to travel 3 hours to Ann Arbor but it was too far and really tired me out not to mention the shot alone was $20,000 per month and now it’s just over $500. I don’t understand that but whatever.

I have an Associates in Humanities and Social Science and another degree in Social Work. I suffer from Fibro so have not worked in quite some time. I don’t know if working would be harmful and make the tumors grow lessening the life I have left. That’s why I am seeking anyone’s insite.