Hello @cmhgiddy24 and welcome to the NETs support group on Mayo Connect. I'm glad that you found this forum. I found Mayo Connect when I was facing my third surgery for NETs and it was great to find others who could share this journey with me.
It is good to hear that the treatment you've had is keeping the cancer at bay. I'm sure that you are pleased with these results. The side effects of the injections do sound problematic. Perhaps, at your next oncology appointment, you can talk about these side effects and ask if there is anything that can be done to lessen these post-injection problems.
You mentioned that your oncologist has probably not treated many NETs patients, like yourself. I would highly recommend that you scheduled at least one in-person or virtual appointment with a NET specialist to review your situation and determine the best treatment options going forward.
Mayo Clinic has NET specialists at all three of their locations. If you would like to obtain a consultation to review your records, here is a link to getting an appointment at a Mayo location, http://mayocl.in/1mtmR63. If, for any reason, you cannot be seen at a Mayo location, here is a list of NET specialists throughout the U.S. https://www.carcinoid.org/for-patients/treatment/find-a-doctor/.
Is a consultation with a NET specialist, something you might consider?
Hi, thank you! Yes, I do intend to address all my side effect issues with the medical oncologist next week and see what she says and I AM very pleased my treatment is keeping things at bay. I am also interested in possibly speaking with a NET specialist at some point, but I don't live near any Mayo Clinic locations. I'm very familiar with Jacksonville as my husband and I helped family out there for several months after my brother-in-law had a lung transplant a few years back so if I can be in the area again for a time, I would definitely pursue. Also, my nephew works in radiology at Ohio State University Med Center and I spoke to a dr. there who was a friend of his (he's since left) who was a NET specialist and he pretty much concurred with my treatment the way things are being handled right now. It's really tough to get in there anyway so unless my situation would worsen significantly or I would need different treatment, I'll probably stay where I am for now. The hospital system here where my surgical oncologist is located, is just starting to venture into the NETS field. He is very on top of his game, I have alot of respect there, and he has already told me that if I end up needing any different treatment than what I'm getting, I will probably need to go to OSU for it anyway. I could also go to Cleveland Clinic, but I would probably choose Mayo if possible, very impressive there. I am very aware of my options and thank you for responding, I really appreciate it!