Anyone taking daily chemo pills everolimus (Afinitor) for their NET?

@post17 I am personally unaware on anyone taking this med, so I am curious to see the responses. I took CAPTEM, capecitabine and temozolomide, for my first year of treatment. I have been on just a reduced of capecitabine for the last three years.

I took Afinitor for 9 weeks
I couldn’t continue because it gave me heart issues that took a very long time to finally recover from
I did immediately get the mouth sores and a rash all over my back
I used warm salt water rinses for my mouth and it worked great for me the rash I don’t remember what the dermatologist gave me but it worked
As far as fatigue I always have that throughout the years
Best wishes

@sophiarose

Thank you !

My husband was on it for 3 years and had stability. He never git the mouth sores but was prescribed a special mouth rinse in case they did appear. You may want to ask your doctor about that.
Everolimus is known to raise blood sugars. Lanreotide does as well so if you're on v
Both, your blood sugars have to be closely monitored. Some have needed to go on metformin to control it.

@post17, you may also be interested in the related discussions in the group search results
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/
How long will you be on everolimus (Afinitor)?

I was on Everolimus for 12 months with very inconsistent results and lots of side effects. I started at 2.5 mg and finished at 10 mg. I had scans every 3 months and tumors progression continued throughout, but not consistently. Tumors that weren’t growing began growing on one scan but not on the next and vice versa. I had many the side effects. Mouth sores, acne, fatigue, joint pain. They would start to diminish after several months, but each time the dosage was increased they came back. I also lost 26 lbs. while eating literally anything I wanted, the only benefit I really got. However, I have heard of people that do really well on it with minimal side effects for years. I just wasn’t one of those. Definitely use the mouth wash and avoid salt and spicy foods if you get the mouth sores. Nap frequently and take Ibuprofen for the joint pain. Good luck!

@espelandmt2 Now that you are not taking Everolimus what treatment are you currently using?

I completed PRRT in May and and stopped Octreotide and Imodium in March. I’m feeling great and my digestive system is working better than it has in 10 years. I have a PET scan in August and will know more then, but I am very optimistic based on how well I am feeling.

@espelandmt2 They stopped my Octreotide when I was on PRRT also and then resumed it. The NP who gave the PRRT said I should be getting Octrotide after each round but was overruled by the oncologist.

In 2015 I was told by multiple oncologists and other patients that Octreotide dosages could increase to 60 mg and then I’d have to switch to Lanreotide. Also, each drug would stop working after 3-4 years and at some point I’d need my gallbladder removed. However, that was all we had back then. I was on Ocreotide (maxed at 30 mg year 4) for 8 years and I don’t believe I got a lot of benefit the last 2 years as my tumors slowly, but steadily increased. So, after my second PRRT infusion I stopped taking Octreotide and Imodium because I was getting constipated. My gallbladder is still functioning well. I no longer have the horrible smelling bowel movements and gas that accompanied the Octreotide infusions. This may be short lived, but for the first time in a very long time I don’t have to worry about finding a restroom every time I leave the house. Also, my friends and family are very happy the foul gas is gone.