1. < Neuroendocrine Tumors (NETs)

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

Posted by andy2020 @andy2020, Feb 7, 2023

Does anyone else have a NET in their spine, I cant seem to find anyone? Its just to share experiences and maybe help each other

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

rrlbees | @rrlbees | Jul 22, 2023
In reply to @hopeful33250 "This all sounds like what you need now, @rrlbees. I'm also glad to hear that the..." + (show)
@hopeful33250

This all sounds like what you need now, @rrlbees. I'm also glad to hear that the doctor was able to put you and your wife at ease and was amenable to talking with the Sloan Kettering doctor and getting your information to Sloan Kettering.

I hope you and your wife have a lovely time in Maine. It should be a nice break for you both. I look forward to hearing from you again with any updates, questions or concerns.

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Thank you

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irenag | @irenag | Jul 24, 2023
In reply to @andy2020 "I first started with a pain in my upper back at the centre, I had every..." + (show)
@andy2020

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?

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Hi Andy2020,
Do you remember if at the beginning your pain the the upper back was intermittent or constant? I have s pain at a spot in my upper back, on the right side of the spine, and it comes and goes but when it's here, it stays for a long time. I have a NET in my pancreas and the imaging hasn't indicated (nobody has told me) anything in the spine. I wonder ...
Thank you.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 26, 2023
In reply to @irenag "Hi Andy2020, Do you remember if at the beginning your pain the the upper back was..." + (show)
@irenag

Hi Andy2020,
Do you remember if at the beginning your pain the the upper back was intermittent or constant? I have s pain at a spot in my upper back, on the right side of the spine, and it comes and goes but when it's here, it stays for a long time. I have a NET in my pancreas and the imaging hasn't indicated (nobody has told me) anything in the spine. I wonder ...
Thank you.

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Hello @irenag and welcome to the NET support group on Mayo Connect. I can certainly understand your interest in the posts by @andy2020.

Have you mentioned this pain to your oncologist? Do you regularly have Gallium 69 Dotatate PET scans to check for NETs? Here is some information about this type of scan:
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
I look forward to hearing from you again!

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sophiarose | @sophiarose | Oct 7, 2023
In reply to @andy2020 "The Tumour in my spine is my secondary cancer I have unknown primary. I have had..." + (show)
@andy2020

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

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I have an unknown primary NET maybe intestines
It has metastasized to my liver periportal lymph node and now the L1 of my spine
I am going to start Everolimus
I see you took for 3 years
Any information you can share on dealing with the side effects I would greatly appreciate
Thank you
Good luckb

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willam | @willam | Oct 8, 2023
In reply to @gsm13161 "Quite often for spinal tumors a form of radiation called cyber knife is used. I’m having..." + (show)
@gsm13161

Quite often for spinal tumors a form of radiation called cyber knife is used. I’m having cyberknife to L4 in a few weeks. Usually there’s 3-5 treatments on consecutive days lasting roughly 1 hour. You will need to have a CT scan so they can map out the treatment. Cyberknife sounds scary but it is like any other radiation however they can deliver higher doses because it is precisely targeted. I’ve had C2, L2,L3 and T12 cyberknifed and since they are all stable. Each cancer responds to radiation differently but it sure beats surgery.
Good Luck

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Hi,

where did you have your cyberknife done?

thank you
janine

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2 replies
tyrol123 | @tyrol123 | Oct 9, 2023

Hello
My mom aged 57 is going through a similar set of problems. Back pain. To complicate things she fell down in the bathroom and now has some fracture there. We don't know what to do. They did an fdg pet which showed increases uptake and they said this could be injury related. But I believe she also started having gastrointestinal symptoms around the same time she complained of pain. The pain on most days is unbearable. I don't know what to do because the oncologist said it's not his case anymore. We did a chromogranin a test which showed elevation. But again they said it's possibility of medicines she didnt stop.
I'm trying to request a gallium dotatate pet scan and see the luck. Of note can you please tell if they could spot any changes in your spine or they just went ahead with the biopsy. Like your mri showing any changes in spine?
Also is it spine or muscles or vertebrae?
My mother has all symptoms which could match with a neuroendocrine tumor but we don't know anything about it.

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gsm13161 | @gsm13161 | Oct 9, 2023
In reply to @willam "Hi, where did you have your cyberknife done? thank you janine" + (show)
@willam

Hi,

where did you have your cyberknife done?

thank you
janine

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At the Pasadena Cyberknife Center

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1 reply
gsm13161 | @gsm13161 | Oct 9, 2023
In reply to @gsm13161 "At the Pasadena Cyberknife Center" + (show)
@gsm13161

At the Pasadena Cyberknife Center

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I’ve had 4 rounds of treatment there for various locations

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1 reply
willam | @willam | Oct 9, 2023
In reply to @gsm13161 "I’ve had 4 rounds of treatment there for various locations" + (show)
@gsm13161

I’ve had 4 rounds of treatment there for various locations

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thank you very much. I live in florida

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kwan | @kwan | Oct 14, 2023
In reply to @willam "Hi, where did you have your cyberknife done? thank you janine" + (show)
@willam

Hi,

where did you have your cyberknife done?

thank you
janine

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@gsm13161,
Hope the cyberknife operation has kept your condition stable. With mets to spine, were you able to have any surgery?
My son has pNets which mets to nearby lymph nodes. He is undergoing PRRT and hope for shrinkage of the pNETs so that surgery can be done. Blood work shows activities shown in his spine lesion area. Wonder if mets to spine will make it irresectable.

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