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.

pavlina60 | @pavlina60 | Mar 11 6:48am
In reply to @ricki8 "You are correct, Somatuline or Lanreotide can produce gall stones among other side effects. How long..." + (show)
@ricki8

You are correct, Somatuline or Lanreotide can produce gall stones among other side effects. How long were you taking this drug before your gall bladder acted up? I am just short of 2 years. Something that might help with symptoms..........maybe some contributors.........
the “no-nos” added by lanreotide are spicy foods, tomatoes, fatty meats, cruciferous vegetables, sugar/sweets. No uncooked veggies, all should be well cooked.

Apparently, 1 person every 90 minutes in the U.K. is diagnosed with NETs, which might help promote research.

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@ricki8- I have been on Lanreotide for 2 yrs on March 10 :). My gallbladder was taken out during the debulking liver surgery in February 2023. ( preventative) I had distal pancreatectomy, spleen and gallbladder removal, and hysterectomy.

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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.

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3 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!

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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.

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@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.

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2 replies
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.

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*some

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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.

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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.

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Turkey | @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.

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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.

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1 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.

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Thank you. Praying for all.

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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.

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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!

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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.

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

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