Anyone have a neuroendocrine tumor (NET) in the spine?

Does anyone else have a Neuroendocrine tumour in their spine where it is growing towards their spinal cord?

Hi @andy2020, is the tumor the primary tumor or a metastasis of the original location? What treatment are you having?

Hello @andy2020

I would like to put you in contact with other members of the NETs discussion group on Mayo Connect. We do have members who have NETs and have experienced NETs in the bone as a result of metastasis.

Is this your situation as well or is the spine NETs your first experience with NETs? I'm also wondering what type of scans you have had that revealed the NETs in the spine?

The Tumour in my spine is my secondary cancer I have unknown primary.
I have had this condition for 3 years and they now believe my primary is located in my right lung but is stable.
For the 3 years i took 'Everolinus' but now that has stopped working so i take;
Capecitabine 500mg for 14 days then 14 days rest
Temozolomide 450mg for the last 5 days of the 14 days and then rest for 14 days.
That completes 1 cycle.
Hope this helps

I first started with a pain in my upper back at the centre, I had every scan you could think of, CT, MRI, PET, Calium scan, the list is endless.
But they still couldn't make their minds up what i was suffering from, so eventually I had a biopsy, By this time the pain was unbearable, I was begging them for help, so they gave me radio therapy and told me then that i had a secondary caner in my spine and all these scans were trying to locate the primary but without success.
Hope this helps?

Hi Colleen,
Thank you for your reply.
The tumour on my spine is a secondary cancer, I have an unknown primary.
I have had this condition for 3 years i was initially on 'Everolimus' but that has now stopped working so I'm now on ;
Capecitabine 500mg for 14 days then 14 days rest
Temozolomide 450mg to take for the last 5 days of the 14days and then to rest for 14 days that completes 1 full cycle.
Only on my 3rd cycle so not sure if they are working?

Hi @andy2020

You have really had a difficult time getting a diagnosis. I can understand how frustrated you must be with pain and no real answers. You do not mention if you are seeing a NET specialist. If you are seeing a general oncologist, I would recommend, at the very least, having a consultation with a NET specialist.
Here is a list of specialists in the U.S. If you cannot see one locally, you might consider a virtual appointment.
–Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

Mayo Clinic has some excellent NET specialists that are on the list.

Not knowing where the primary NETs is located is really a difficult problem, as you well know. You mentioned that your doctors believe that there is lung NET. Has this been seen on a scan?

On Mayo Connect, we have another discussion group that might be of interest to you
--Determination of Primary Site of NET
https://connect.mayoclinic.org/discussion/determination-of-primary-site-of-net/?pg=1#comment-810108

Have you had an appendectomy anytime in your life? Have you experienced carcinoid syndrome (symptoms would be facial flushing and/or diarrhea)?

I' m diagnosed with advanced metastatic paraganglioma with matastasis to the spine. I received multiple rounds of cyberknife to T12, L2 and L3. The tumors have been there for awhile now and are growing slowly but I remain largely asymptomatic. I see the neurosurgeon every 5-6 months after completing MRI's for entire spine so they're watching the stuff closely. Luckily NET tumors tend to progress slowly which seems to be the case here. Also I was started on Zometa but now Xgeva which is supposed to help prevent SRE's and the medicine does seem to be working as so far no problems.

I also have tumor metastases on my spine and ribs, unknown primary. Diagnosed Jan 2020, multiple other tumor sites—lungs, liver, pancreas, adrenal gland, parotid gland. Grade 2/3, well-differentiated. I see Thor Halfdanarson at Mayo Rochester—AMAZING.
I started with CapTem, also. Did two rounds but it just didn’t work for me. Do not fret if that is the case. There are so many other options. I did 10 rounds of FOLFIRINOX, then 50 rounds of FOLFIRI. I was stable for almost 2 1/2 years on these treatments. Switched to PRRT/Octreotide in December 2022 after some growth in my liver. Have had two rounds and so far, so good. Will have scans before 4th treatment in May.
The best of luck to you!

@andy2020
My wife is also taking the Cape and Temoz, in the pill version. She has a primary mass on her tail of pancreas, which spread to liver. She has completed 9 cycles, like yours, and has tolerated it fairly well. The chemo has reduced the number of tumors on the liver and pancreas by about 70%. She is at the point where the chemo has done about all the work it will do, and surgery on March 1st is next. The plan depending on how that goes, is to get this where it is only a maintenance item with the possibility of still needing the Lanreotide injections monthly. Is there goal with the chemo in your case to reduce the tumors, to get where surgery might be possible?