1. < Neuroendocrine Tumors (NETs)
Mentor

Welcome to the NETs Group! Come say hi.

Posted by Teresa, Volunteer Mentor @hopeful33250, Jan 20, 2017

Hello and welcome
Let's pull up our chairs in a circle and check in with each other and talk about how we are doing with our NET diagnosis. Any new tests, meds or treatments going on for you? What about your symptom control? Any concerns you have?

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

roseflame | @roseflame | Jan 26, 2023
In reply to @hopeful33250 "@gaylejean That is a good question. I have always thought that the Octreoscan was the best..." + (show)
@hopeful33250

@gaylejean That is a good question. I have always thought that the Octreoscan was the best way to track NETs, but I know that other scans have been used as well. Let's see what the other members of our community have to say about that.

@amyh2439 @tresjur @joannem @lucci50 @derekd @gulzar @joanney @jenchaney727@dzerfas @lorettanebraska @wordnoid @trouble and @upblueeyes @ahtaylor @heidilynn4 Please share with us, what types of scans have been used in your situation to track tumors. Teresa

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Hi Teresa, I had been having MRI scans every 4-6 months after removal of the primary NET from my small bowel in 2018, but proliferation of metastases to liver and peritoneum caused the docs to switch to the PET in November.

Now they have found spread to sternum, so I started on Lanreotide in December and think it will be all PET scans from now on to check if the drug has succeeded in stopping the spread. Fingers crossed!
Rose

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 26, 2023

Hello @roseflame,

I appreciate your update. In one of your earlier posts, you mentioned that you were not having any carcinoid symptoms. How are you feeling now? Any problems with pain and/or eating issues?

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roseflame | @roseflame | Jan 26, 2023
In reply to @hopeful33250 "Hello @roseflame, I appreciate your update. In one of your earlier posts, you mentioned that you..." + (show)
@hopeful33250

Hello @roseflame,

I appreciate your update. In one of your earlier posts, you mentioned that you were not having any carcinoid symptoms. How are you feeling now? Any problems with pain and/or eating issues?

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Thanks for following up, Teresa. Nope; I’m so lucky — never a symptom nor any pain. I have had the expected diarrhea after the shots (3 so far) but no eating or digestive issues. I’m so eager to see if the shots have made a difference when I meet Dr. Le after the scan Feb 28. With the support of this group, I have found it easy to stay hopeful even faced with the reality that this will never be fixed. I feel great!
Rose

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monkey5333 | @monkey5333 | Jan 27, 2023

I’m itching all over and wonder if it’s from the tumour

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3 replies
marwa | @marwa | Jan 30, 2023

I have an Acth producing tumer in lung if any one had similar case what was the protocol if treatment

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 31, 2023
In reply to @keeper3102 "Hi Everyone, Lucy C. here, was just diagnosed with NETS this year on my birthday Aug..." + (show)
@keeper3102

Hi Everyone, Lucy C. here, was just diagnosed with NETS this year on my birthday Aug 22, and have had my 1st major surgery on 10/20. This has not been very much fun. I go see the Oncologist soon and have a million questions for her! I'm a retired nurse so I have a good idea whats about to happen but I still need all the advice I can get as the one place I never worked was the Oncology Units. So, I'll be dropping in to read everyone's comments as I've already read some good news and advice. Wish me Luck, Later, Lucy

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Hello @keeper3102

As it has been a while since you last posted and I was thinking about you and wondering how you are doing. Has any chemotherapy or other treatment been recommended? Will you post an update when it's convenient for you?

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Teresa, Volunteer Mentor | @hopeful33250 | Feb 1, 2023
In reply to @monkey5333 "I’m itching all over and wonder if it’s from the tumour" + (show)
@monkey5333

I’m itching all over and wonder if it’s from the tumour

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Hello @monkey5333

Regarding the "itching all over" I'm wondering if you have asked your doctor about this. If not, please do so. Not being a medical professional, I do not know if it is related to the tumor, it could, of course, be related to a medication that you are taking.

When did the itching start? Is it in close proximity to any of the meds you are taking. Will you follow up with your doctor?

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Teresa, Volunteer Mentor | @hopeful33250 | Feb 1, 2023
In reply to @hollywood817 "new here. was just diagnosed with LiverNET. My symptoms were fatigue and diarrhea. Had an ultrasound,..." + (show)
@hollywood817

new here. was just diagnosed with LiverNET. My symptoms were fatigue and diarrhea. Had an ultrasound, then a cat scan and finally a biopsy which confirmed the pots on my liver were cancerous. My PCP was very assertive to get the ultrasound as the original diagnosis to my symptoms was that my body was absorbing iron (also had a ferretin count 3x target). So I donated blood a few times but she was worried the increased iron could impact my organs and scheduled the ultra sound. My next steps:
1. Have a PET scan to find the source of the liver cancer (neck to toes)
2. Have an echocardiogram to see if the cancer has thickened the walls of my aorta (while not a common occurrence, it does happen)
3. Start the monthly injections (PRRT)
I'm feeling positive and hopeful and just started reading these posts. The support here is wonderful and I have a lot to learn. Any insight from people who have already gone through this process is more than welcome. We are scheduling to have #1 and #2 completed by the end of this month. Thanks

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Hello @hollywood817 and welcome to the NETs discussion group on Mayo Connect. I see from your post that you are new to the NETs diagnosis. I'm glad that you found this forum.

I would like to invite other members (@sophiarose @mkmn @cu2 @pjsheridan2022 @jay1225 @spartan @sturns @trivia @kim1965 @dbamos1945) who also have liver NETs to share their experiences with you.

You mentioned that you are having monthly injections. Are these monthly injections being used to treat the symptoms of carcinoid syndrome, such as diarrhea, etc.?

You also mentioned that you will also be having PRRT. Is there a schedule for when this treatment will start?

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monkey5333 | @monkey5333 | Feb 1, 2023
In reply to @hopeful33250 "Hello @monkey5333 Regarding the "itching all over" I'm wondering if you have asked your doctor about..." + (show)
@hopeful33250

Hello @monkey5333

Regarding the "itching all over" I'm wondering if you have asked your doctor about this. If not, please do so. Not being a medical professional, I do not know if it is related to the tumor, it could, of course, be related to a medication that you are taking.

When did the itching start? Is it in close proximity to any of the meds you are taking. Will you follow up with your doctor?

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Yes I will follow up with my doctor. I had the itching before my pain crisis that put me on this wild ride.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 2, 2023
In reply to @monkey5333 "Yes I will follow up with my doctor. I had the itching before my pain crisis..." + (show)
@monkey5333

Yes I will follow up with my doctor. I had the itching before my pain crisis that put me on this wild ride.

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I'll look forward to hearing about what your doctor says. I hope that you are able to get some relief.

Will you post with any other questions? I would really be interested in knowing what your doctor suggests for the itching.

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