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Anyone with an insulinoma have only therapies instead of surgery?
I really recently got diagnosed with malignant insulinoma. About a year ago I collapsed at home and paramedics took me to the hospital (small town then transferred to a bigger city) because of low blood sugar. They took CT scans, said they saw nothing (I've since learned that that is fairly common), but prescribed me diazoxide 2x a day and octreotide shots 3x a day to make my blood sugar at least be high enough to not pass out and sent me home to get an endocrinologist.
My endocrinologist didn't know what was wrong so told me to try to get an appointment at MD Anderson for a 72 hour fast. It took a long time (long story) before they accepted me, which was in May of this year I think.
It went from my endocrinologist sending me for a 72 hour fast to a malignant insulinoma on my pancreas in a few weeks so I am completely overwhelmed.
After a Ga-68 dotatate scan (where my tumors lit up like a Christmas tree) and a biopsy (where they discovered they were malignant with a k-67 of 24) I was referred to an oncologist who I met with once where he told me I had cancer (none of the other doctors told me, I just saw the notes on MyChart, saw, but didn't understand, the scan results, and obviously saw my new doctor was an oncologist).
It was a short meeting and he told me I wasn't a candidate for surgery because I had too many tumors and I couldn't do the long acting lanreotide because it caused my blood sugar to drop significantly before going up again and then gave me paperwork for Everolimus and said that I needed to read over it that weekend and meet with them again and sign some papers and start taking it.
I went home and read about everything as much as possible and it seemed like most people started on other things, like Lutethera , before doing the Everolimus.
I wrote him asking why he chose the treatment he chose (I was completely overwhelmed at the first appointment so didn't really ask many questions), but he was and still is, on vacation so I got a physician assistant who didn't really answer my questions. I met with her a few days ago to go over the Everolimus paperwork and sign stuff and the medicine is currently on its way from a specialty pharmacy. I am to start it as soon as it gets here (along with dexamethasone mouth rinse).
The main reason I agreed to Everolimus was because I wanted to get started on SOMETHING. I have 3 kids (the youngest being 4) and I really want to get started on this journey. I went from reading bedtime stories with my kids to reading cancer articles and scholarly articles with words I can't even pronounce, much less understand what they mean
No one I know, (doctors included) have seen an insulinoma, much less a malignant one, so all this is new to me and I feel completely overwhelmed and don't know what information to read or even how to look things up.
I guess my main question is, has anyone else ever started on Everolimus as a first treatment and, if so, what's your experience? Thank you.
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Hi
I was diagnosed with a malignant insulinoma last July. The tumor originated in my pancreas and lesions in my liver....no surgery. I started on 5FU foflox combined with Everolimus. I had a reaction to the combination so they took me off the Everolimus but said possibly will add that later on. I have had the 5U infusions since last July and my tumors are stale. The insulinoma was very difficult to control at first with numbers dropping and dealing with that. I wear a Decom system so I can monitor. My numbers have been stable since my tumors have been.
I found a number of tricks to help the numbers....if you are interested or in need of my list please reach out..happy to share.!
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3 ReactionsHello, My husband has the same. He was put on everolimus at the same time as starting 5FU folfox treatment and stayed on the everolimus about 6 weeks. He has also been on OCTREOTIDE 28 day shots for over a year. He did folfox 5FU for 6 months and had to stop, his sugars were stable for 10 months. He is currently on CAP/TEM treatment and sugars are so far stable after first round. If you have access to a cancer treatment center you may want to explore what they do for this very rare NET cancer. We started at a major medical center and they wouldn’t even talk about chemo. We switched to a cancer center and they have done so much. We wish you the best.
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3 ReactionsI would love a list of tricks for helping with the numbers. I only just started Everolimus so it hasn't been long enough for anything to get "stable" .
Right now I have a libre 2 on my arm that alarms when it goes too low and I keep honey, glucose pills, glucose gel and the inhaler (for emergencies because I have gone unconscious a few times from low blood sugar) next to my bed for when my numbers tank.
I have had to get used to a new diet because I've always hated sugar and sweet stuff and the only carb I liked was potatoes so it's been a huge change, and any help is nice because this is all really new.
I have started to keep a journal to see which foods do certain things, but it's hard to see if it's my medicine or what I'm eating honestly.
Thank you for any help and for sharing your story.
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1 ReactionThank you for sharing. If I have learned anything on this new journey it's that everyone seems to react differently so it's a very personal treatment plan, which makes things so hard sometimes!
This means (at least to me) that it's a good thing for the people with this to talk to each other to learn things too, and not just depend on one doctor or one treatment.
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3 ReactionsCornstarch added to an evening snack like pudding or chicken or beef bouillon did help my husband when he was struggling with his numbers overnight. Mix a tablespoon with a little cold water before adding to food so it doesn’t lump. Our best to you.
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2 ReactionsOur doctor also recommended extend bars which have cornstarch in them. Can be difficult to find. I purchased on line.
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2 ReactionsHello
Believe it or not...about two to three teaspoons of cornstarch in tea(just what I chose) will
bring up the numbers and steady them for a bit. I use to have that after lunch to hold off my drops till later. I also would have that at night before bed to help get thru the night.
I eat what is called an extend bar (extend nutrition bars)at night before bed....keeps my numbers steady throught the night. I like the yogurt and berry but there are other flavors.When my number was too low before bed I had a tablespoon of peanut butter....that always works!!
I keep a small bottle of ginger aisle next to my bed...few sips raises the numbers.
I too wear a dexcom system which monitors the numbers.I try to shoot for a higher number before bed and then eat that bar.
Try the corn stach...Im not using it much now,but it really really helped!! They did say better in something cold like milk but I coukdnt do it...I went f the tea.
Let me know if there is anything else!!
My best to you!
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3 ReactionsForgot one more thing....when I take my medications I take them with orange juice...the juice raises the numbers and byes me time time to eat!!
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3 ReactionsHello @briea and welcome to the NETs support group on Mayo Clinic Connect. It is so good to meet you. I see that many others in our support group have posted with you and shared their experiences. Connect makes the sharing of experiences so much easier.
I have followed the narrative about your symptoms and coming to a diagnosis. Many of us have traveled this same road. As you mentioned in your first post, "After a Ga-68 dotatate scan (where my tumors lit up like a Christmas tree) and a biopsy (where they discovered they were malignant with a k-67 of 24)." I would highly recommend that you see a NET specialist. Mayo Clinic has some outstanding NET specialists at all three of their locations. If you would like to have a consultation (either virtual or in-person), here is a link that will help you with an appointment. http://mayocl.in/1mtmR63.
If this is not possible, here is a list of NET specialists (world-wide). Perhaps a consultation with one of these doctors would be helpful.
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
You are wise to seek the best help available. NETs are a rare form of cancer and are best treated under the supervision of a NET specialist. Often just one consultation, can you put you on the right road and then you can follow-up with your local oncologist.
I would also encourage you to attend the NETs Support Group meeting this evening, via Zoom. You will meet a lot of folks who have traveled this road and are more than happy to share their experiences with you. Here is the link to register (so that you can obtain the Zoom link),
https://mc-meet.zoom.us/meeting/register/tJwkf-ivpz4jG9aqLYrH43Nl-mHPpWp-RBuf
How are you feeling now? What is the most difficult symptom you are experiencing?
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1 ReactionHi,
So nice to hear your story. I can relate. I recently had a endoscopy EUS ultrasound and biopsy of nodule. The biopsy came out positive for neuroendocrine tumor stage 1 malignant. My gastroenterologist did not tell me the tumor was malignant when he called me. I only found out because my endocrinologist didn’t get a copy of the biopsy even though her office referred me. So I picked up a copy at the gastroenterologist office. No one has yet met with me to discuss. I have looked up a lot of information on line and it is scary to me. I am going for a PET scan in another week. I am afraid they may tell me I need Whipple surgery which I’ve read can take 2 to 12 months to recuperate. I don’t have anyone to care for me so I don’t know that I could do the surgery. My friend told me about the everlimus. I don’t know if stage 1 qualifies for this. Do you by chance know.
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