I have 3 nueroendocrine tumors in my left lung

Hello @margaret10

I am interested in your comments about mitochondria. I had some blood work at the University of Michigan (that was sent to the Mayo Clinic for testing), and the results indicate a strong possibility for my having a mitochondria muscular disorder. I now have an appointment with the genetics department at the University of Michigan to check further.

If you could share a bit about how your mitochondria disorder was determined, I would love to know more. Is it believed to be due to the NETs issue or something else?

@arleighna - it gets better with time! My first 6 mo I was in bed for 2 days, nauseated. Now I get tired and slight headache on the day. I also take Zofran 30 min or so before injection. The day of the injection I eat light - crackers and swiss cheese.
Hang in there! There are benefits to Lanreotide!
I also take bitter melon and watch my carbs, and my glucose seems to stay stable (~130 in the morning)

Thank you for answering. I'm only two shots in, but my blood sugar has been insane the last week. I've had my lobectomy, done the chemo, then the immunotherapy, and now the hormone therapy. But honestly I feel worse on the lanreotide than the immunotherapy. Do the side effects get better over time? The only thing that is better, I've had next to no flushing.

Yes, I have elevated blood sugar and hair thinning as a side effect of Lanreotide treatment. Still no meds for diabetes, but I take biotin (10K) for the hair.
Diagnosed with pNET in 12/22, had surgery 2/23, on Lanreotide (120mg/28days) since 4/23

@margaret10: Glad to learn about your situation. Many of my NET peers have Neuropathy in feet/legs and unfortunately their hands after bouts of Chemo Combos to control tumor progression. A few are now Type 2Diabetics due to NET treatments that defy glucose control.
I know we are looking for a way to successfully deal with the discomfort and loss of dexterity from Neuropathy. Trial and Error with supplements to creams - we look for that illusive magic formula. At least we have this forum. Bette

Thanks for the tip re continuous glucose monitor. Actually, I don't have diabetic neuropathy. Don't even have pre-diabetes. My neuropathy seems to be caused by 2 mutant genes that in turn, cause mitochondrial dysfunction. My mitochondria seem to be getting destroyed due to an imbalance in control mechanisms that, when they're working properly, maintain the health and proper number of mitochondria in a cell. Mitochondria, when healthy, are the "power plants" of the cell, converting food to energy currency, ATP.
I appreciate the thought. I believe most neuropathic pain is caused by diabetes.

@margaret10: I have been treating Diabetes Type 2 for 30 yrs. Neuropathy symptoms in toes/feet/lower calf’s slowly increasing; fingers and hands are now tingly at times. This is a progressive disease and we fight every day to keep glucose numbers within range while still enjoying bites of our favorite foods. We do the same with diabetes medications - I am now insulin dependent, but you just do what you have to do. It is a balance… like juggling!
Use creams, patches, hot/cold, exercise, whenever and whatever relieves the discomforts that arise from Diabetic Neuropathy.
The best thing has been getting a “continuous glucose monitor” approved through Medicare/UHC! This little miracle gives you critical info about your glucose numbers and allows you to react immediately to rectify the hi or low! There are many brands- I use the Dexcom G7. Hound your doc to find a way to order this for your BEST health. I hope this helps you.
P.S. Yes, Lanreotide 120mg 28 day injections do effect my glucose readings/diet choices/exercise level. I have heard that the Chemo drugs also have their glucose changes.
We have to question every drug for changes in our diabetic regimen and make individual adjustments. Stay positive… life is good!

Did you have changes in your blood sugar levels with the lanreotide?

Thanks for your comments. Being 8 years your senior and knowing your decisions help me feel better about mine, I'm passing on prayers for you.

At 67 I was given my diagnosis of stage 3 lung Nets that has metastasized to my lymph nodes. While the chemotherapy and radiation made me extremely tired and nauseous with headaches, but it wasn’t that bad. Today’s low dose radiation is much more tolerant than that of resent past.
The positive side was treatment was reduced size of my tumors by 50%. And tumors have showed no progression in growth after 18 months.
The negative side was it took the 18 months to get back to a feeling of normal.
I now get monthly injections of lanreotide. A couple of things to note from my experience is that the injections can affect the sugar levels in your blood and I have read that it also can cause hair to thin out. Just know that everyone is different and so are the after affects.
I often contemplate would I opt for treatment again. My answer is always yes. The tumors are still in my body and I face my future with the cancer as my new normal. Everyday is a blessing. I’m sure you will make the right decisions for yourself. There is no right or wrong answer, just be blessed in knowing you have choices.