Why do I get so tired so easy?

Sorry to hear what you are having to deal with! I have pnets and am tired a lot in the beginning when I asked my Dr about being tired he said cancer will make you tired! I have come to the conclusion cancer and everything related makes us tired Chemo, radiation, medication, scans and a lot of other things. You are going through a lot just trying to work shows how tough you are. Get all the rest you can!

Sorry to hear about your cancer and fatigue. I’ve been in treatment for recurrent breast cancer, lung NETs and DIPNECH for 5 years now and it’s the meds (Kisqali, Letrozole and octreotide) that all cause the fatigue. The first 2-3 years were the worst. I hope your body adjusts some over time, but I don’t expect to ever have the energy I did before cancer meds. I still enjoy life though. It’s just my new normal with limitations. Best to you.

@crawfordville I have a pnet that has spread. I agree that the cancer and the treatment for it makes me tired. It is just part of my life. I try to get extra rest. Without it, I seem to get more tired and tired. I don't know any other way to deal with it.

@californiazebra Wondering...are you on the once a month shot for Octreotide? Or are you taking the daily dosages? Since I have been on the daily, I am so tired I can barely get out of bed for any extended period of time. The doctor wants me to come in for the once a month, but I am anxious that it could be even worse.

I am on the monthly injection of ocreatide and I get my third injection in two weeks. I'm tired but not exhausted. I still try to walk a half mile each day. I struggle between giving into it wondering if I'm lazy and using treatment as an excuse or genuinely fatigued. I do try to maximize my good days.

@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! 💕

@nannybb
Yes, my case in managed by a thoracic oncologist on a NETs multidisciplinary team. An interventional radiologist orders my regular CTs and I meet with him after each CT. I meet with the thoracic oncologist annually, but the IR will contact him if necessary. I now just added a pulmonologist on that same team who will also monitor my scans and meet with me. Since this specialty team is not close to home, I do video calls unless there is a reason I have to show up in person, like a scan or procedure. The thoracic oncologist coordinates with my local breast oncologist so I can have my octreotide shots a mile from home. I'm in and out in 20 minutes. Very convenient.

Yes, we have to be informed and be our own advocates. No one has more time to spend on our case than we do. Specialists tend to be very siloed so when we have multiple medical issues and a variety of specialists, we must take it upon ourselves to be informed to be sure one specialist doesn't interfere with the treatment of another. All this medical stuff takes up sooo much time, but it is what it is. I just go with the flow and enjoy the non-medical part of my life. It's like when we have to do our chores before we can go out and play. Best of luck. 🙂

@californiazebra I like your last line. It made me laugh. In my case, I have to go back to work. I HAD a pulmonary doctor whom I can no longer see because United Healthcare could not come to an agreement with his clinic. AI suggested I ask my surgeon for the oncologist that he happens to work with at OSHU to come on board to monitor my meds. Sounds like a plan to me. I'm just hoping Dr. Pommier does not take it the wrong way. You make it sound like that would be normal protocol. Maybe the more, the better. (?) I just need to get past the medication problem. I literally could sleep all night, and 3/4th of the day.