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Mon, Sep 9 10:53am · What topics do you want for the Neuroendocrine Support Group? in Neuroendocrine Tumors (NETs)
Mon, Sep 9 10:27am · What topics do you want for the Neuroendocrine Support Group? in Neuroendocrine Tumors (NETs)
I have been heavily engaged in NETs since my wife was diagnosed at Mayo Rochester in the fall of 2015. Since diagnosis, she has lost 40 pounds. While she had some extra she was within the normal weight range. The weight keeps slipping off and its harder and harder to regain. She has suffered from bouts of partial blockages that last 3-5 days and cause further weight loss (about 5 pounds each time). She receives Octreotide injections monthly 30 MG LAR.
Recently I was reading a publication from Tara Whyand who is a Oncology and Neuroendocrine Tumor Specialist Dietitian at The Royal Free Hospital, London (since 2012). She is considered a leading R.D. for NETs. It has been our experience that very little time and attention is placed on nutritional aspects of patients with NETs. For example, I just learned that those receiving Octreotide injections should get their B12 checked every 18 months. NET, NET (pun intended), more discussion around NETs nutrition would be helpful in my opinion.
Here is a great resource to find NET specialists – http://www.carcinoid.org/for-patients/treatment/find-a-doctor. I'm glad the document was helpful for you. If you don't mind, if you have any suggestions what you feel should be added, please let me know. Always trying to make enhancements.
This is a challenging subject. My wife like you has her specialist Oncologist at Mayo and a local oncologist where we live. We consider Mayo to be the lead for disease strategy and our local oncologist, one who executes the strategy on a daily/monthly basis labs, Octreotide, Afinitor prescriptions), etc.
Luckily, they work well together. Our local providers practice is a Mayo Network Partner so that may make a difference. We also haven’t run into any ‘controversial’ issues like yours.
In your case, I may ask to arrange a three way conference call with them with you acting as the moderator asking them to develop a strategy that will work in your best interest. A live phone call with all on the line may make a difference. Too many people hide behind emails and messaging.
Just my two cents.
Wisconsin has its own patient directed group for those with NETs and their caregivers. Its called Wisconsin Neuroendocrine Cancer Connection. The group is on facebook. This year are planning three gatherings – one in Appleton, another near Milwaukee and one in Madison. The benefits are being able to share experiences, get questions answered, deal with insurance issues, gain emotional support and meet new friends. Also this year, we've joined NCAN – Neuroendocrine Cancer Awareness Network – the largest patient focused NETs group in the world. This will provide us access to more resources. Please share the attached flyer with your local oncologist and other medical professionals who may treat those with NETs.