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Pancreatic neuroendocrine insulinoma

Neuroendocrine Tumors (NETs) | Last Active: Feb 10, 2023 | Replies (30)
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@lastround

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.

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Replies to "Hi Marlene [and all], I also live in Massachusetts and am going to Dana Farber. As..."
links | @links | Feb 6, 2023

Hi
I am happy to engage a conversation on my personal email if you would like!
My primary tumor is in my pancreas with lesions on my liver.
Happy to let you know what I have been treated with and going thru!
Marlene

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links | @links | Feb 6, 2023

Hello
I have had about 16 rounds of chemo..happening every two weeks.
The primary tumor is pancreatic and I have lesions on the liver. My scans thus far have shown
shrinkage so the plan is to continue on the chemo...Foflox..
Yes the eating is hard....but having the insusolinoma I have to try to maintain the sugars..so I have to force it..soups are good,easy to eat..but sometimes not enough protein.I do make some shakes,but that doesnt quite help the sugars. Yes the neuropathy is hard..but I dont want them to change the chemo so I try to just deal with it. As long as the chemo is working they will continue it. All they tell me is that there are other things but we are not there yet.
I do get quite nauseous especially after the chemo...so dealing with that and trying to keep my sugars up is quite challenging.Orignally they said no surgery....but I am hoping there are other procedures they might be able to do. I know some people who have had ablations and PRTT procedureds to help kill the lesions. Im hoping they will have a plan..for now this is it.Please dont hesitate to reach out with questions...open to hear about your journey..ps also at Dana Farber!
My best
Marlene

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