Pancreatic NETs: Looking to connect with anyone with insulinoma

Hi Marlene [and all],

I also live in Massachusetts and am going to Dana Farber.
As I said getting chemo now [12th round Monday] hopefully the last for a while. Have been satisfied with them but they don’t seem to have and answers for what’s next other than a maintenance program.
I’m looking for a cure, as we all are.
I’m not sure exactly what kind if of chemo I’m receiving but do know it is similar to what you receive if you had Collin cancer.
I’m having trouble eating. Metallic taste in my mouth and no appetite,I’ve lost 80 pounds in 6 months, so there is the up side to being a fat guy.
The only thing that’s eatable is fish chowder for some reason, so good thing we live in Boston area.
The biggest side effects of the chemo has been Neuropathy [pins and needles feeling] in my hands and feet. It’s becoming painful in my feet. But luckily no sickness.
I’m not sure what it was called but at hospital number 2 they did give me 2 injections in my liver to block the blood flow to the tumors but it did nothing. [for me anyway]
My wife is more familiar with the exact treatments.

Bob T.

Hi Bob and Welcome!
I read your other post regarding your insulinoma metastasis to the liver. I am sorry to hear. You may have read above but I have had multiple insulinomas removed and/or ablated in 2 different surgeries. For some time now they have been monitoring multiple indeterminate lesions on my liver - some that have some metastatic characteristics but so far unable to determine if they are insulinomas/metastasis. I go back to Mayo in April for some more testing of the lesions.
You asked about treatments in your other post. I am currently on Octreotide (long-acting) and it is effective at deceasing the hypoglycemia significantly. My challenge with Octreotide has been a past anaphylactic reaction so I required a desensitization procedure prior to being able to take it again. This was done because, of all the treatments I have tried, Octreotide has been the most effective for combatting hypoglycemia.
You also mentioned considering getting another opinion at Mayo. I have been receiving treatment and care at Mayo for my insulinomas since 2017. I have been very pleased with both the expertise and compassion I receive in all my experiences at Mayo. I wish you the very best in your journey and sounds like it has been a challenging one to say the least.
I am happy to engage with any questions you may have for me. Take care!

@lastround
Hello Bob and welcome to the NETs discussion on Mayo Connect. This is a discussion group that deals specifically with insulinoma and I thought you might find it helpful to meet the members here who also have this type of NET. I understand from your previous post that your glucose is now under control as the chemo has shrunk the tumors. That must be rewarding to have some relief.

You mentioned that you have been having chemotherapy. If you are comfortable doing so, what type of chemo are you having? Have you had many side effects?

I am so grateful for your response to my post,and the possible connection that we may have with our stories.I have been under chemotherapy since July,2022.I was receiving 5FU infusions biweekly combined with 5mg daily of everolimous,but we had to stop the everolimous about 3 months ago because of some reactions and the infusions are far more important.
I have had 2 scans to date,both showing disease control and some shrinkage.The most pressing issue along the way is managing and dealing with the sugar levels. I do wear a Dexcom system to try and manage day and night.Oddly they found adding cornstarch to any liquid,like tea helps the levels. I am not on injections(yet).I know the net combination with the insulinoma is rare,but I am encouraged to hear that you have been managing for some time!
For me having a connection is important and hope you might feel the same...hearing positive responses,encouraging news and developing treatments is great!
I live in the Boston area,not sure where you are located.
I am interested to hear more of your story and happy to share mine.
I look forward to hearing from you...wherever you are located,there is another strong supporter right here!!
My best
Marlene
Happy to share my number if you would like!

Greetings! Thanks for the post. I am happy to connect with you. I have been dealing with insulinomas since 2014. I have had 11 removed/ablated in 2 different surgeries - a modified whipple and a distal pancreatectomy and splenectomy. I still have at least 2 left in my pancreas and being monitored for metastasis to the liver. I am currently on long acting Octreotide - IM injections every 4 weeks to keep my blood sugars under control. This is the second time I have done octreotide injections. I had an anaphylactic reaction the first time and had to go through desensitization because hypoglycemia episodes had escalated to the point I could no longer go without some type of treatment and had not tolerated other treatments due to allergic reactions. I started the short-acting in December and converted to the long acting this week. So far so good 🙂
I would be interested in hearing more about your treatment regimen and more than happy to answer any additional questions you have. Thanks again for your post!