Thank you!

I was going to attend the zoom last night but ended up being in traffic and couldn't download the zoom app on my phone in time for the meeting . Will there be other ones so I can sign up for them and get a reminder in time?

My biggest symptom now is mainly just the low blood sugar, although I've gotten better at controlling that. I have 3 little kids so the fatigue and constantly having to make sure I'm all good (as far as having food, medicine, snacks, juice etc) before has been the biggest adjustment, but I know that is microscopic compared to what's going to happen to me.

I just started Everolimus a few days ago, so it hasn't really been long enough for any symptoms yet.

I guess I was just surprised because, other than the blood sugar stuff, I've felt fine and every doctor I went to before with my symptoms since it all started (8/22) kept telling me how rare an insulinoma was, BUT if that was the problem it definitely wouldn't be malignant because that is even MORE rare (I have no family history of cancer or really any big diseases as long as you don't smoke) and if they found it I could just get the surgery and be done and cured forever.

Then suddenly, after the 72 hour fast (I lasted 1 hour 5 minutes before tanking to 37 blood sugar level) everything went so fast I didn't actually meet or talk with anyone too much, just kept getting referred to different doctors through MyChart messages and appointments who sent me to different places and people and to the tests until finally, (on my daughter's birthday in June) I saw I had a message of my new doctor who was an oncologist so I was very surprised!

Then I met with him but was so overwhelmed with everything because I went from "don't worry about it, even if it is the rare insulinoma we'll just get it out and you'll be cured" to "metastatic G3 pancreatic insulinoma to liver" that is "non-curative" and the treatment is to "prolong life", and then he set me up with a prescription for Afinitor, but went on vacation the next day.

After I got home I thought of a million questions (mainly about why the Everolimus treatment instead of the others, especially getting surgery because it's apparently well-differentiated) and sent him a message, but I only got a response from his assistant who just said that it's worked for his other patients, without answering my specific questions.

My new doctor is a specialist at MD Anderson in Houston so I know he must be good, but it was just overwhelming and it's so hard to research and talk to people because of so many responsibilities and decisions that I can't seem to know enough about to triage correctly.

I just need to get organized because I want to know as much as possible as fast as possible before it gets too late to maybe choose a different treatment.

Sorry for the long answer and thank you for reaching out.

Thank you! I have joined so many places I forget sometimes, but now I'm getting more organized and trying to keep things more together. I'm actually looking for an old school file cabinet to keep physical records separated and organized because sometimes that is easier for me to handle vs. online stuff.

I definitely will send my information to the mayo clinic for evaluation so I appreciate that link very much!

I read somewhere that if the scan lights up it means that there are different treatments (I think that was the Lutethera?) that might benefit me moreso than if it didn't, so that is something else I needed reminding off to put down.

Other than the constant battle with fatigue because of my hypoglycemia episodes (which I am buying cornstarch today as per recommendations here!) and a few sores from the Everolimus, I feel absolutely fine so I guess I'm just waiting for the shoe to drop as far as that goes.

I honestly was feeling more positive about my treatment and everything until I read on some Facebook groups some not-so-good things about my specific doctor, so that made me start questioning everything.

I just registered for the zoom meeting too.

Thank you again!