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Pancreatic NETs: Looking to connect with anyone with insulinoma
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.
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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Thank you for connect spotlights! Yes, this impacts my blood sugars. The first time I had them, I could hardly keep my levels above 50 some days. This time, it's a little easier to control.
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1 ReactionHello @sshindle and welcome to the NETs Support Group on Mayo Connect. I'm glad that you found this forum. I appreciate your comment that you've been inspired as you've read the posts of others who are on the same journey as you are.
I would like to invite some other members to this conversation including @pavlina60, @ahtaylor and @tomrennie.
Here are their Connect Spotlights where you can read more about their experiences:
--@tomrennie
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/the-world-aint-all-sunshine-and-rainbows-meet-tomrennie/
--@pavlina60
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/a-scientists-approach-to-helping-others-meet-pavlina60/
--@ahtaylor
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/giving-it-all-youve-got-meet-ahtaylor/
As insulinoma tumors often affect blood sugar numbers, I'm wondering if this has been an issue for you as well?
I look forward to hearing from you again. Will you continue to post your questions and concerns as you anticipate surgery?
Hi. I am new to the group. I have 3 insulinoma tumors on my pancreas. I am scheduled for surgery next month at John's Hopkins. I had 3 tumors removed last February by enucleation. They are now back and I am having part of my pancreas and spleen removed. I have been reading your stories and I want to say how inspiring everyone is. I am very scared and not sure what to expect after the surgery or how to handle this disease as it sounds like a life long condition.
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3 Reactions@htam4- I live in Syracuse, NY. We have a very good Cancer center and I had my surgery there in February 2023. The surgeon who did mine , Dr.Dhir is a very good doctor, with NET experience and now he also does robotic Whipple procedures! I was not a candidate since my tumor was large (16×20 cm) and I also had endometrial cancer.
Look him up! Dr.Mashaal Dhir.
Good luck! And do not wait for your tumour to grow! You are lucky they found him so small!
Hi I really need more feedback from this whipple surgery?
I gained a lot of weight... But I still could eat , walk , work 😞 I don't know if I could still do this after this surgery ...
I have heard Memorial Sloan Kettering in NY is very good.
I'm located in NY and would you suggest any doctor near me ? I certainly don't want to be diabetic and hopefully to have a very gentle way to cure my tumor. 1.1 cm on my pancreas head
I have daily headaches and go to the bath room several times a day. My tumor is 1.5cm in size. The symptoms will get worse over time. I know the whippo is scary but on the insulinoma support group out of the uk on face book talks about people who had it with this condition all the time and they feel better than they have in years and have not become a diabetic. The recovery can be rough but you have to plan the long game
Hi these two days I have light headache and 3-4 times diarrhea in the morning. I really worried about my pancreatic tumor. What is your experience about it ?
If the cancer has not metastasized and they are willing to do the surgery it is my understanding this is curable. My husbands traveled to his liver and now his bone. Don’t wait. My best to you.