Welcome to the NETs Group! Come say hi.

I would encourage everyone with a NETs diagnosis to join us in the following NETs support group originating from the Mayo facility in Jacksonville, FL. Here is the information. I do encourage you to register soon. This Zoom meeting is limited to 50 participants and last month there were 40 people registered.

This will be your opportunity to ASK the oncologist all of those questions that you would like answered.

Neuroendocrine Cancer Support Group

Thursday, February 3, 2022; 6 to 7:30 p.m. EST (note time change)
(4 to 5:30 p.m. MST)

Topic: Round Table Discussion
with Dr. Mohamad Bassam Sonbol, M.D.
Oncology Mayo Clinic, Arizona

Location: Virtual (Zoom)

Please register in advance for this meeting since space is limited to 50 participants:
https://mchealth.zoom.us/meeting/register/vpUqdeGvrzksvBPx9kW8518Rtp8_vzMoEg
After registering, you will receive a confirmation email containing information about joining the meeting.

Just thought I would contact this group to say Hi. I was diagnosed with NETS about a year ago. Before that, I was diagnosed with MEN1, a condition whereby there are tumors on many of my hormone-producing glands—parathyroid, adrenal, pituitary and pancreas. I have had a number of surgeries to remove tumors on the parathyroid and adrenal, but the tumors on my pancreas have spread to my liver. Hence the PNET diagnosis. I have been injected with Lanreotide on a monthly basis since my PNET diagnosis and my quality of life has not changed, although I have one minor side effect which is manageable. Most recently my oncologist has suggested that I take Afinitor along with my injections. Side effects can become increasingly bothersome. I have so many questions and concerns, mostly regarding my quality of life. Has anyone out there had an experience with the Lanreotide-Afinitor combination and did you have serious side effects? And in general, how do you deal with this seemingly overwhelming diagnosis?

I also use both miralax as a stool softener + 300 mg of mag citrate to stimulate activity. Per my GI both are safe for chronic constipation. Drink coffee as well in the am with the mag citrate. Get pretty strong reaction with numerous movements with the coffee on an empty stomach. Need to experiment with the amount of coffee to avoid excess movements. Please comment on this protocol and let me know if I I can do anything more. Thanks

Thanks

Hi, I also have NETS and love being a part of discussion boards to learn and keep up to date in new treatments. I have had this diagnosis for 12 years now! I’ve been on most of the meds at some point. Currently I am just on Temodar. Thanks for adding me to the group.

I have been on Octreotide shots for several years and also took Afinitor for a couple of years. The worst side effect I had was mouth sores especially if I ate acidic foods BUT my pharmacist in the Cancer Clinic suggested I use liquid Dexamethasone on them when I got one of them. It so worked for me and was a true blessing he suggested it. This was pre Covid so I’m not sure now if you can still ask for it (prescription) since they have also used it for Covid treatment. Again, this was oral and it only took a dab on the spot so a bottle lasted forever. Sometimes my appetite wasn’t so great but never really a problem for me.

I have Pnet with 23 tumors on my liver, and else where. They are looking at doing the embolize the tumor or a few of them. How did you do through this procedure and when did did you go through this ? Thank you, Anthony

Just checking in and saying hello before the support group meeting tomorrow. I am new to the group and have been learning my way around Connect. I was diagnosed with NETs to the liver without discovery of the primary tumor in February 2021. I have been receiving lanreotide injections since then and also completed 4 PRRT infusions beginning in July 2021 and ending in January 2022. My first follow-up scans in April showed significant decrease to lesions in the liver and I'm feeling well. I do have some side effects from both treatments, but nothing that is not manageable. I receive treatment at Mayo Arizona and also in my hometown of El Paso Texas. I'm looking forward to learning more about NETs and management strategies and treatments from other members of the group. Thanks for providing this option.
Karen

Hello Karen (@kjstein)

Welcome to Mayo Clinic Connect! I am glad to hear that you have been finding your way on Connect.

It will be nice to meet you (virtually) tonight at the support group meeting (it is necessary to register in advance for the meeting in order to get the Zoom link).

You must be very pleased with the results of your NET treatments. It sounds good that the lesions in the liver have decreased. Were you able to tolerate the PRRT, well? If you don't mind sharing more, what side effects, if any, did you experience?

Yes, I was able to tolerate PRRT well. The treatments went exactly as they were explained and my major side effect was fatigue--really fatigued after the first treatment and less so with each of the remaining 3. For me the fatigue was most noticeable the first few days after treatment and lingered for about 2 weeks when I started to get some energy back! No nausea either during or after treatments--but I did notice that there were certain foods that I really craved and others that I just did not want to eat. I also did experience thinning hair (which I think may be unusual) but I did not lose all my hair! By the end of the 4th and final treatment, I did have mild anemia--but blood levels stayed within low end of normal limits throughout treatment. It is taking some time to build my strength back up, but I'm back to normal levels of exercise and feeling well now (about 4 months after last treatment). The protocols for after receiving the treatment are pretty strict (distance from other people and your pets for several days, laundry and bathroom protocols, etc.) but overall this treatment was not as scary as it sounds! Happy to share more if anyone else is thinking about this as a treatment. Just at the start of the journey, so will see how it goes from here!