Welcome to the NETs Group! Come say hi.

Hello, My name is Lenora and this is my first time commenting on the NETs website. I have been reading the comments which have been most informative. I was diagnosed in September 2021 with Stage four NETs with metastasis to the liver, bones, lymph nodes and pleura. I had a liver biopsy in Sept. which showed grade 2 (closer to 1) cells, well differentiated. It has taken several months and tests to get to this point. This has been the most difficult part for me. A mesenteric node was found on an MRI which was done in 2019 and the recommendation was to watch and wait. In the interim I was being treated for GERD, H.Pylori infection and gastritis.

The treatment with PPIs, antibiotics, antacids helped initially, but my symptoms persisted. The pandemic was also a factor in a delayed diagnosis. I believe in self-advocacy and insisted that something else was wrong with me. I suspected that I had cancer somewhere. It wasn't until the results of the 24hr urine were reported that my GI specialist suspected Carcinoid Tumors which now showed up in an enterography. I guess better late than never!

The timeframe from diagnosis to treatment has been relatively short. For that I am grateful. I am being followed at Fox Chase Cancer Center in Phila. by someone who specializes in these cancers. I am receiving first line treatment with Octreotide which I self-administered for three wks and now get once a month in long acting form. I will have a CT scan in February 2022 to see how things are progressing. My fear is that there will be little or no positive change only because my symptoms persist and are very episodic.
I would be grateful to speak with someone who may have had a similar experience.
.

Thank you for all the information. I have nonfunctioning lung to liver Net just found out in July so new for me. I have atypical cacinoid in lung 5-7% and diffuse multiple mets in liver one large others small. Ki67. Asymptomatic except for shock at having diagnosis. NP at Moffitt said if you are going to have something best kind to have as manageable as a long term condition. However for non functioning treatment is limited. Was glad to hear Tom's wife doind so well on Afinitor 10mg for four years. That concurs with Dr. Willin head of Mount Sinai in NY who said he has patients who do well on it for years. Another helpful presentation was the 2020 update called ABC.s of NET that included Dr, Willin and five other expert physicians describing NET as unique syndrome. I am at Mayo now and having scans every 4 months and working a local onc for monthly bloodwork. Some odd bloodwork like super high B12 levels bot nothing too remarkable and remain asymptomatic have been able to d/c the dex mouthwash after 5 months after reading Dr, Mary Hogan ( who instituted use of dex wash) that after 8 weeks could titrate down and do prn. Thank goodness Novartis pays for afinitor at 25K a month.

Hello @cvb and welcome to Mayo Clinic Connect. I appreciate you sharing the story of your journey with this rare disorder. It is also good to know that you are asymptomatic, as I am as well. You mention that your Vitamin B12 levels are high. Does your doctor think that might be related to NETs?

I have had three surgeries for NETs of the upper digestive tract. I also have had no symptoms, the first NET was just found during a routine endoscopy for GERD and other digestive problems.

As you also have had no symptoms, I was wondering how your NETs were found. Was it the incidental result of a routine test for something else?

yes was found in routine blood work with liver values off further testing revealed tumors in liver the biopsy and dx of lung to liver net as for vitamen b12 levels local onc and mayo onc not concerned however will do follow up tests

@lenorahaston

I would like to join the others in welcoming you to the NETs discussion on Mayo Clinic Connect. It is so good that you are reaching out to others with NETs, it helps to ease that "all alone" feeling that comes with a rare diagnosis like NETs.

It sounds like you have received some good information from reading the posts on this site. I would also like to invite you to a NETs support group that meets on Zoom. It is held on the first Thursday of each month, beginning at 5:30 EST, and originates from Mayo's Jacksonville campus.
It is led by a Mayo Clinic social worker, Michelle Walsh, @michellewalsh.

Closer to the time of the meeting a registration link will be provided and once you register, you will be sent the zoom link.

My experience with NETs has involved three surgeries of the upper digestive tract with no apparent metastasis at the present time. My only treatment has been surgery with no other therapies.

I can understand your concern if your symptoms continue to persist even after beginning the monthly injections. I'm guessing that you are experiencing carcinoid syndrome symptoms such as diarrhea, flushing, etc.

Is this the case?

@cvb

I'm glad that you provided some more information about your diagnosis.

I would also like to invite you to a virtual NETs support group at Mayo, that is facilitated by a Mayo social worker, Michelle Walsh, @michellewalsh from the Jacksonville, FL campus. The meeting is held via Zoom on the first Thursday of each month beginning at 5:30 p.m. EST and usually continuing until 7 p.m. or so. Every other month there is a medical specialist who speaks on some aspect of treatment for NETs and on the in-between months, there is general group sharing. As you are relatively new to this diagnosis you will probably find it helpful and educational to learn and share with others.

You mentioned a Dex mouthwash. I'm not familiar with that. Could you discuss how it helps?

Do you have an appointment yet for the next scan at Mayo? Do you visit Mayo in Rochester, Minnesota, or another campus?

TY I go to mayo in Jax and have been to the support group via our other email address. Dex wash for persons on afinitor to prevent mouthsores a common complaint and some people have real problems with it and will stop taking afinitor in my case mouth sores were not an issue and I found Dr. Mary Hogan about d/c dex after 8 weeks if no sores dr starr agreed with this. so thought would spread the word one less med. My next scan is March 15. I also exercize meditate and changed my eating habits after my sister in law a dr of pharmacology sent me a book Eat to beat disease by Dr Li which is great. Also in counseling for recent loss of family as well. Also go to accupuncture have a great person very supportive. thank you Carol

Hello,
Thanks for your reply and the invitation to attend the Support Group zoom meeting. Yes, I am concerned that my digestive symptoms have not abated as much as anticipated. Thankfully, the Octreotide injections have stopped the diarrhea which was the hallmark of my disease. Now, I have to be very cautious with my dietary habits because I have multiple midgut tumors which adversely affect digestion. As I stated, I am awaiting results of the next scan next month to see whether things are stabilizing or progressing. Until then, I take it one day at a time.
Lenora