@nannybb
I have been taking the every 28 days octreotide shots for 5 years now. I had the same concern as you with the first injection since I tend to overreact to meds. I would guess the monthly shot will affect you just as the daily does. You didn't have any scary reaction to the daily, so that's good. As for the fatigue or any side effect, often our bodies adjust to meds over time and the side effects diminish. I had two other meds that gave me a non-stop headache the first two months I took them then no issues for decades after that.
As for my side effects, it's a little hard for me to identify because I started two breast cancer meds a few weeks before I started the octreotide and they all have a lot of side effects in common such as fatigue and hair thinning. My fatigue was already really bad from the Kisqali, but I felt the octreotide made it a bit worse. I was especially tired the day I took the shot then better after that. The fatigue either improved over time or I became used to it. I felt all 3 meds were causing hair thinning, not like chemo, just thinner and less healthy. Specific to the octreotide, it can cause blood sugar spikes when you eat which it does for me so I've revised my diet to be more balanced with less carbs which I needed to do anyway. It can also lower your heart rate which it did to me and I already had a low heart rate and BP from the other meds. BUT, I was so miserable for decades with the chronic cough, mucus, chemical sensitivity, allergies (life ruining level) that when the octreotide knocked out those things, it was life changing for me! I felt normal!!!
I will never give up octreotide because the benefits far outweigh the side effects for me. It also improved my shortness of breath. They also haven't noticed any significant growth in my nodules in the 5 years I've been on octreotide. They all doubled in size the first decade we monitored them before I had a diagnosis. So, octreotide is a big win for me. Best of luck.
@californiazebra Hey, thank you so much for your response. You have really been through a lot. I do not have as many NETs symptoms, which is most likely why it was not considered when I had my first spot on my lungs. I get out of breath, and my face gets flushed. I'm gussing my GP would not know those can be sympathetic. I also am getting the impression my GP is not all that trained in several other conditions that I have because she tends to brush them off. I have been on AI for the past 2 hours asking all kinds of questions. This cancer is more complicated than it is given credit for. Just because it is usually slow growing, does not mean we as pts. should not be told as much as possible so we can be a part of out own treatment plan. I'm wondering, do you see an medical oncologist as well as a surgeon? AI told me having an oncologist on board is a better plan in getting tests and medications sorted out. Do you have an opinion? Btw, I'm so happy the med. is working well for you! 💕