Neuroendocrine Insulinoma: Is treatment different for this type?
It seem there are many different types of Neuroendocrine tumors. My husband has metastatic insulinoma. Is there anyone else who has this type of cancer? Is treatment different dependent on the type of Neuroendocrine tumor you have? Interested in others experiences with this type of cancer. It is very rare.
Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
I've been dealing with it. I had multiple tumors on my pancreas, with lesions on my liver also. Causes hypoglycemic episodes constantly. Had Whipple procedure done, it stopped hypoglycemic issues for about 4 months. Unfortunately lesions grew, things have returned to battling hypoglycemic bouts everyday. Currently am doing chemo, with capecitabine and telmodar
My husband has one tumor on his pancreas and “innumerable” lesions in his liver. They started the 5-FU chemo in early September along with a short series of everolimus. His sugars came under control and have stayed that way so far. He ended the chemo after 12 sessions but had to end the oxylaplatin after 10 due to severe neuropathy. We are two months out and maintaining with monthly injections of OCTREOTIDE. The chemo reduced the size of the tumors quite a bit. He goes next week for his 2 month scans and we are hopeful they are maintaining. My best to you. Keep fighting.
@bnjncrew – welcome to the NET insulinoma group. There are several on or around this page with insulinomas. Several in the group do have metastatic insulinomas. I have had 11 insulinomas removed from the pancreas in 2 surgeries and have a couple of them still there. I have multiple liver lesions that are indeterminate for metastasis. I have an appointment at Mayo in April that will give me more information about whether the lesions are insulinomas. I am currently on Octreotide as well, which is helpful in managing the hypoglycemia. I was initially diagnosed in 2015 and had a Whipple procedure to remove 2 tumors. In 2017, after continued hypoglycemia and a referral to Mayo Clinic, I had a distal pancreatectomy/splenectomy and 9 more tumors ablated or removed in that procedure. Presently, the additional tumors in my pancreas are inoperable due to small size and previous surgeries. I am happy to try and answer any questions you may have or just be a support for what you all are going through! Best wishes!
Hello @pontiac, I would like to welcome you to the NETs discussion on Mayo Clinic Connect. I appreciate you sharing your experiences with @bnjncrew.
I look forward to getting to know you better. If you are comfortable sharing more, how long ago was your Whipple procedure done; does your medical team have any answers for the hypoglycemic bouts you are having; and is your oncologist a NET specialist?
Whipple procedure was performed August 2022. Only explanation I've received is my pancreas just dumps excess insulin. My blood sugar is dangerously unstable, have multiple times of losing consciousness. Constant glucose monitor that I've been given helps monitor it. Laying down flat to sleep is impossible, my blood sugar will drop 30 40 points in 30 minutes to hour. I have to eat to constantly to keep my blood sugar in the 70s and 80s. I'm frustrated beyond belief. I've gained lots of weight, trying to keep blood sugar stable.
I would like to invite @ahtaylor to this discussion as she has also had a lot of problems with blood sugar related to NET insulinoma.
Are you currently seeing a NET specialist? Mayo Clinic has great NET specialists in all three of their locations (MN, AZ and FL). If you are interested in getting a second opinion, here is the link where you can check on appointment availability, http://mayocl.in/1mtmR63.
If you are not able to be seen at Mayo (for any reason), here is a list of other specialists worldwide,
–Find a Doctor
I look forward to hearing from you again. Will you post again and let me know how you are doing?
Ask your doctor about everolimus and add cornstarch to food. It does help regulate the sugars. My husband put it in chicken bouillon or chocolate pudding. It did seem to help.
I was diagnosed last July with an insulinoma,tumor in my pancreas and liver lesions. I am on round 19 of 5-FU chemo..I was on everolimus,but had some reactions to the combo and they felt the 5-FU was more important not to miss…so for now the everolimus is on hold(but said probably add down the line. I too have neuropathy,trying to deal with it as best as possible.
I wear a Dexcom system to monitor my sugars. I have them moderately under control.
They tend to go haywire sometimes when I get disconnected from the infusion.
They want to continue the chemo until such time as it plateaus. Last scan showed shrinkage so on to the next.Have not started OCTREOTIDE shots as of yet. The sugars are the hardest as my taste is terrible for most foods and I am not particularly hungry…the sugar monitoring demands eating to regulate them!
My best to all of you.
@pontiac – thanks for your post! I completely understand your frustrations! After my Whipple procedure in 2015, my hypoglycemia continued which is how I became a patient at Mayo. Once at Mayo and after a week of testing and intraoperative ultrasound, 9 additional tumors were discovered. Post the distal pancreatectomy @ Mayo in 2017, I continue to have hypoglycemia, only to eventually learn there are additional tumors in my pancreas and possibly liver. My care and care providers at Mayo are fantastic! While the process of fighting the hypoglycemia is quite frustrating, I know I am in the best hands at Mayo. I go to Rochester, on average, every 6 months since my surgery there is 2017. I also wear a CGM which I find very helpful in management of blood sugars. I am currently on Octreotide to manage the hypoglycemia. Please don't hesitate to ask questions and I will try to help in any way possible. Best wishes!
Please keep trying to eat. Most people don't realize that 20% of people who have cancer die from Mal nutrition. I understand the taste issue my husband has had it too. Very important to keep your energy up though.