I have 3 neuroendocrine tumors in left lung: Can I handle radiation?

Hi Teresa,
I have 3 mutant genes, two of which encode proteins that are located in the mitochondria. The first is SDHB Ile127Ser, c. 380 T>G, which means that at position 127 of the protein, the Isoleucine amino acid has been replaced with the Serine amino acid. This is a pathogenic, i.e., disease causing mutation. The protein is located in the respiratory chain of the mitochondria inner membrane, and it is one of a chain of proteins responsible for producing ATP from food. The second mutant gene is FBXL4 Cys547fs*, c. 1641_1642, which means that at position 127 of the protein, there has been a frame shift mutation, so everything downstream in the protein is incorrect and the protein most likely terminates early. This is pathogenic as well. FBXL4 is important for fusion of mitochondrion to form more productive mitochondria, and it also regulates the degradation and recycling of defective mitochondria via lysosomes. I am heterozygous (one good copy, one bad copy) for each of these genes and both of my mutations is recessive for mitochondrial dysfunction. I've been told that I have only half the amount of normal SDHB and FBXL4, which means that my mitochondria aren't functioning at full capacity. (If I was homozygous for either of these two genes, i.e., it would be fatal in infancy). So, it is the combination of the two proteins, each operating at 50% capacity, that is likely causing mito dysfunction and neuropathy, along with a number of other symptoms. These two mutant proteins cause over time damage to the mitochondria, so that the mitos eventually are degraded by lysosomes. Ultimately, this can produce mitochondrial depletion which means symptoms including neuropathy, chronic fatigue, GI issues, etc. which vary from one person to the next. If your doctors suspect mitochondrial myopathy, genetic testing is important. To cover all the bases, they may do whole genome sequencing or if they are looking for suspected culprit mutant genes, they may only do a panel. Re the neuroendocrine tumors, these potentially could be caused by mutant SDHB. SDHB Ile127Ser is dominant for tumors/cancers, and I've read that there's about a 20% chance of developing a tumor if you're a carrier. I had one at age 9; it was not cancerous and never recurred. So it's my mutant SDHB that gave rise to the NET, and the combination of my mutant FBXL4 and SDHB that likely is responsible for mitochondrial dysfunction and neuropathy. (It's strange, but true, that mutant SDHB is dominant for tumors, but recessive for mitochondrial dysfunction.) There are 100s or 1000s of other genes that encode mitochondrial proteins, and if mutant, might cause mitochondrial dysfunction. I would appreciate learning from you how it turns out with Univ Michigan. Best of luck!

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.