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Insulinoma and back pain

Posted by marec @marec, Jul 18 9:34pm

Has anyone with a diagnosed Insulinoma experienced middle back pain that feels like you’ve been punched or are bruised in the area.
X-ray of lumbar and thoracic spine are “normal.” Have not had imaging for Insulinoma yet.

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zacharycat | @zacharycat | Jul 19 10:49am

Insulinoma diagnosed in 12/23. In 12/24 went into physical therapy for sharp back pain, which I had for some months. It felt more like something pulled or pinched than like a bruise. It tended to be mild or absent in the morning, much worse by evening. Therapists did evaluation and had me in twice a week for stretching and weights. Was a good start to the day, and after some progress they discharged me with a list of home exercises.
I stopped the exercises though while recovering from distal pancreatectomy surgery. Probably time to start again although there is still some stiffness in the abdomen.
As for the insulinoma it still puts me into low blood sugar if I exert myself for long. It had metastasized to the liver and is still active.

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marec | @marec | Jul 20 11:43am
In reply to @zacharycat "Insulinoma diagnosed in 12/23. In 12/24 went into physical therapy for sharp back pain, which I..." + (show)
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Insulinoma diagnosed in 12/23. In 12/24 went into physical therapy for sharp back pain, which I had for some months. It felt more like something pulled or pinched than like a bruise. It tended to be mild or absent in the morning, much worse by evening. Therapists did evaluation and had me in twice a week for stretching and weights. Was a good start to the day, and after some progress they discharged me with a list of home exercises.
I stopped the exercises though while recovering from distal pancreatectomy surgery. Probably time to start again although there is still some stiffness in the abdomen.
As for the insulinoma it still puts me into low blood sugar if I exert myself for long. It had metastasized to the liver and is still active.

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I haven’t had an official diagnosis of Insulinoma but my symptoms definitely look like one (per my GP and and ER Doc). Seeing endocrinology on Tuesday.
Zacharycat…thank you for responding. Did they see metastases to the liver on imaging before your pancreatectomy?

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zacharycat | @zacharycat | Jul 20 1:16pm

Yes, they saw the liver metastases on day 1. In fact they ruled out surgery at that time. Later, after the first rounds of chemotherapy, they said that surgery might be done but would probably be two surgeries with recovery time in between.
Instead I went to PRRT, which reduced the size of the pancreatic tumor as well as giving almost complete symptom relief. After 4 sessions of PRRT they decided to go to lanreotide only (which I questioned at the time) and prepare for the surgery. I would have liked 6 or even 8 PRRT rounds as I doubted from experience that lanreotide alone was enough for a grade 3. Then I had the surgery, which included radiofrequency ablation on the liver. Now taking oral chemo (cabometyx).
I was seeing endocrinology from Jan 2024 on. They gave me a dexcom 7 glucose meter, prescribed diazoxide to inhibit insulin release and also recommended taking corn starch to stabilize the glucose levels. Prednisone was also used as it can block the action of insulin. Prednisone and diazoxide both have side effects, and the latter medicine cost about $50/week at the pharmacy so better if you can avoid them.
Hopefully your insulinoma is local and lower grade so it can be removed and won't cause so many problems.

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