1. < Neuroendocrine Tumors (NETs)

Pancreatic NETs: Looking to connect with anyone with insulinoma

Posted by links @links, Jan 19, 2023

Looking to connect with anyone who has an insulinoma. My tumor presents in the pancrease. I currently have chemotherapy bi weekly since July 2022. This is a rare combination and have struggled with regulating my sugars and hoping to meet someone else with a similar diagnosis.

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

margiefein | @margiefein | Jun 17, 2024
In reply to @htam4 "I have the same problem as you and always have low blood sugar syndrome. I tried..." + (show)
@htam4

I have the same problem as you and always have low blood sugar syndrome. I tried to live with insulinoma with frequent meals and so on. Anyone to share with me what is your treatment if I don't want the surgery?

Jump to this post

If it has spread the treatment listed to the only option. If it is a single insulinoma surgery is the best option. With time the symptoms will get worst and can cause black outs and coma if not managed. I have to eat carbs every 2 to 4 hours around the clock to stay alive. My surgery is in a week to remove it. There is a support group on Facebook just for insulinomas patients and is full of information. They have three groups one for suspected, one for diagnosed and one for multiple or metastatic

REPLY
2 replies
htam4 | @htam4 | Jun 17, 2024

Thanks for your sharing and gave me comments

REPLY
htam4 | @htam4 | Jun 17, 2024

I have the same problem in my pancreas

REPLY
htam4 | @htam4 | Jun 17, 2024

I have the same problem as you and always have low blood sugar syndrome. I tried to live with insulinoma with frequent meals and so on. Anyone to share with me what is your treatment if I don't want the surgery?

REPLY
1 reply
bnjncrew | @bnjncrew | Jun 16, 2024
In reply to @ahtaylor "I have metastatic insulinoma. Mets to the liver. PRRT has not been part of my treatment..." + (show)
@ahtaylor

I have metastatic insulinoma. Mets to the liver. PRRT has not been part of my treatment plan. Currently my treatment plan is monthly injections of Sandostatin LAR. Hepatic artery embolization has been discussed as a future treatment as the tumors progress. Glad to hear he is doing well!

Jump to this post

My husband started with emboliztion but I have read that PRRT is being considered as a primary treatment for nets now. He also has monthly injections- octreotide. My Best to you!

REPLY
ahtaylor | @ahtaylor | Jun 15, 2024

I have metastatic insulinoma. Mets to the liver. PRRT has not been part of my treatment plan. Currently my treatment plan is monthly injections of Sandostatin LAR. Hepatic artery embolization has been discussed as a future treatment as the tumors progress. Glad to hear he is doing well!

REPLY
1 reply
bnjncrew | @bnjncrew | Jun 13, 2024

Hello, I am curious if anyone here has been treated with the PRRT for metastatic insulinoma. My husband is completing his 4th round tomorrow and I am curious if any follow-up treatment has been offered after this. He is doing quite well by the way.

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Feb 10, 2023
In reply to @lastround "Administration, Can these posts get a little more organized? Getting hard to follow conversations posts are..." + (show)
@lastround

Administration,
Can these posts get a little more organized? Getting hard to follow conversations posts are all over the place

Jump to this post

Hello @lastround.

In order to follow conversations easier, I suggest two things:

When you are responding to a post, always start the post with the individual's screen name (@name) that they use (as I did when I started this post to you).

Also, when you respond to a post, click on "Reply" that is another way the response gets directed to the person who are responding to.

I hope this helps all in this discussion group including, @margaret12 and @links. This is probably something you have all used, but it is a good reminder.

REPLY
lastround | @lastround | Feb 9, 2023
In reply to @ahtaylor "Bob, To provide some additional information. . . I have had 2 surgeries - a modified..." + (show)
@ahtaylor

Bob,
To provide some additional information. . . I have had 2 surgeries - a modified whipple in NC in 2015 and a distal pancreatectomy/splenectomy in 2017 at Mayo - in those two surgeries, there were 11 total tumors that were either removed or ablated. After the second surgery in 2017, hypoglycemia persisted, and it was discovered through a Calcium Stimulation test that there was at least one if not more tumors still in the pancreas. Up until 11/2022, the tumor(s) could not be seen on imaging due to small size. There are 2 very small areas (5mm or smaller) now visible on CT that are possible insulinomas in the pancreas, as well as a couple of areas on the liver that are indeterminate but possible insulinomas. Due to their size, location and the extensive previous surgeries, the pancreatic tumors are currently deemed inoperable. Chemo and radiation have not been part of the plan of care due to the size of the tumors and the inability to monitor if the tumors are shrinking. Thankfully, the desensitization to the octreotide is helping keep significant allergic reactions from occurring and the medication is quite effective in creating a significant decrease in hypoglycemia episodes. I continue to go to Mayo clinic every 6 months and the care is excellent. I feel in very good hands in Rochester. Wishing you the best in your continued journey. Hope to hear from you soon. Take care!

Jump to this post

Thanks Taylor, that is interesting.
Glad to hear that the medication is working. I just finished my 12th round of chemo, so maintaining programs are next

REPLY
lastround | @lastround | Feb 7, 2023

Administration,
Can these posts get a little more organized? Getting hard to follow conversations posts are all over the place

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