1. < Neuroendocrine Tumors (NETs)

Living with Neuroendocrine NETS, any advice?

Posted by gg66 @gg66, Dec 13, 2024

Hi I am new here and just want to have a good place to chat with people that share my thoughts and concerns about my experience

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

kaiulani | @kaiulani | Mar 17 12:08pm
In reply to @sadragliz "has anyone been contacted to do a research study. I think since this cancer is rare..." + (show)
@sadragliz

has anyone been contacted to do a research study. I think since this cancer is rare everyone should be contacted to see if maybe there is a factor that is the same with almost if not everyone with NET. Just saying. My pathology was sent to Mayo but noone contacted me personally to ask questions.

Jump to this post

I live in Canada: aside from having a Whipple / liver debulking in October 2023 and starting monthly lanreotide injections in March of 2024, the main “treatment” that has been offered to me (repeatedly) is MAiD (a handy acronym for “medical assistance in dying”). I’m still waiting and waiting and waiting some more to hear about PRRT. I have NEVER been contacted about any clinical studies. I have stage 4 pNET which is ruthlessly advancing but I don’t even have a follow-up appointment. That is the state of healthcare in Canada SMH

REPLY
1 reply
ricki8 | @ricki8 | Mar 16 8:56am
In reply to @dbamos1945 "@hollywood817: Just one more thing…if you are interested there is a great international organization called LACNETS...." + (show)
@dbamos1945

@hollywood817: Just one more thing…if you are interested there is a great international organization called LACNETS. They offer videos/lectures/virtual meetings and everything regarding NET. There are many renowned specialists affiliated with this group. Lisa and Heather moderate. Best health for you.

Jump to this post

An update - Lacnets is now called Neuroendocrine Cancer Foundation.
'Hooray for Hollywood' - sorry, I couldn't resist (I was an actress).

REPLY
ricki8 | @ricki8 | Mar 16 8:49am
In reply to @sadragliz "has anyone been contacted to do a research study. I think since this cancer is rare..." + (show)
@sadragliz

has anyone been contacted to do a research study. I think since this cancer is rare everyone should be contacted to see if maybe there is a factor that is the same with almost if not everyone with NET. Just saying. My pathology was sent to Mayo but noone contacted me personally to ask questions.

Jump to this post

Hi Sadragliz
Until recently, it was declared that NETs was rare. No longer. But please understand that those of us with NETs, will have our own experiences, hence the 'Zebra effect' (my now profile photo), so, it is important to do your studies and be assertive with your questions and follow-ups. Most physicians are overly busy these days and we have to work with them.
Good luck!

REPLY
laree | @laree | Mar 15 9:39pm
In reply to @tomrennie "I was really sick when I first started Captem. I experienced side effects of nausea, vomiting......" + (show)
@tomrennie

I was really sick when I first started Captem. I experienced side effects of nausea, vomiting... you will be given something for the nausea and vomiting to take before taking the Temozolomide, overall body aches and pains, mouth sores, neuropathy, and fatigue. I didn't get everything all of the time, but I did experience most of them eventually. My body has adapted much better over time. I no longer take support meds like gabapentin for nerve pain or motion sickness patches for nausea. It does take some getting used to but I am alive. I shouldn't be. If you have any other questions, just let me know.

Jump to this post

Thank you. Praying for all.

REPLY
Mentor
Turkey, Volunteer Mentor | @tomrennie | Mar 14 12:31pm
In reply to @laree "@tomrennie Thank you for getting back. I wish you all the best! Sounds like things are..." + (show)
@laree

@tomrennie
Thank you for getting back. I wish you all the best! Sounds like things are going well! You mentioned that you did experience side effects? Did you get used to Captem at aome point? That is great that you didn't need any other therapies, but Captem. Awesome story! Thanks again.

Jump to this post

I was really sick when I first started Captem. I experienced side effects of nausea, vomiting... you will be given something for the nausea and vomiting to take before taking the Temozolomide, overall body aches and pains, mouth sores, neuropathy, and fatigue. I didn't get everything all of the time, but I did experience most of them eventually. My body has adapted much better over time. I no longer take support meds like gabapentin for nerve pain or motion sickness patches for nausea. It does take some getting used to but I am alive. I shouldn't be. If you have any other questions, just let me know.

REPLY
1 reply
catalinaharley752 | @catalinaharley752 | Mar 12 2:09pm
In reply to @sadragliz "has anyone been contacted to do a research study. I think since this cancer is rare..." + (show)
@sadragliz

has anyone been contacted to do a research study. I think since this cancer is rare everyone should be contacted to see if maybe there is a factor that is the same with almost if not everyone with NET. Just saying. My pathology was sent to Mayo but noone contacted me personally to ask questions.

Jump to this post

My symptoms are flushing with sweats and tremors,controlled very well by getting 40 got sandastatin every 28 days. I’m on oral chemo ( Everolimus) and Creon for the diarrhea.

REPLY
laree | @laree | Mar 12 1:57am
In reply to @laree "@tomrennie Thank you for getting back. I wish you all the best! Sounds like things are..." + (show)
@laree

@tomrennie
Thank you for getting back. I wish you all the best! Sounds like things are going well! You mentioned that you did experience side effects? Did you get used to Captem at aome point? That is great that you didn't need any other therapies, but Captem. Awesome story! Thanks again.

Jump to this post

*some

REPLY
laree | @laree | Mar 12 1:56am
In reply to @tomrennie "My pancreas had an 8x6cm tumor. My liver also had innumerable lesions with the largest being..." + (show)
@tomrennie

My pancreas had an 8x6cm tumor. My liver also had innumerable lesions with the largest being 8x6cm. There were traces of the cancer throughout my body mostly in my bones. I started captem. It took a few cycles but everything started shrinking. After 13 cycles, my pancreas and liver were working again, so I was switched to a lower dose of maintenance capecitabine. After 1.5 years of just capecitabine, everything is still stable. Keep the faith. There is hope.

Jump to this post

@tomrennie
Thank you for getting back. I wish you all the best! Sounds like things are going well! You mentioned that you did experience side effects? Did you get used to Captem at aome point? That is great that you didn't need any other therapies, but Captem. Awesome story! Thanks again.

REPLY
2 replies
kim1965 | @kim1965 | Mar 11 3:24pm

Can’t say enough about the CAP/TEM chemo option. For my wife it resulted in approximately a 70% reduction in size of tumors around pancreas and liver. It is one option you need to discuss with your team if it is the best option for your fight against NET. You got this!

REPLY
sadragliz | @sadragliz | Mar 11 11:07am

has anyone been contacted to do a research study. I think since this cancer is rare everyone should be contacted to see if maybe there is a factor that is the same with almost if not everyone with NET. Just saying. My pathology was sent to Mayo but noone contacted me personally to ask questions.

REPLY
3 replies
View MoreView Less
Please sign in or register to post a reply.