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Anyone have a neuroendocrine tumor (NET) in the spine?
Neuroendocrine Tumors (NETs) | Last Active: Oct 23, 2023 | Replies (56)Comment receiving replies
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?
Replies to "Hi Colleen, Thank you for your reply. The tumour on my spine is a secondary cancer,..."
@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?
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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!