Why do I get so tired so easy?

@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 Are you seeing a NETS oncologist? My husband's first tumor was found and operated on in 1995. 28 years later he was rediagnosed Stage 4 and the NETS tumors fill his skull and body. We learned then that the majority of oncologists are not very familar with NETS. We work with Mayo Rochester and have had excellent care. He has been on Lanriotide since Janaury 2023 and has been stable until his scans this past week. He will start the PRRT treatment on June 1. We're very hopeful that the tumors will decrease or stabilize. We are very confident in the NETS oncology team that we work with. Good luck to you!

@rkklingerOh my. That is quite a shock. I'm so sorry. No. I am trying to get in to an oncologist at OSHU here in Portland, Oregon. I had switched after the surgeon who originally operated did nothing for the pain I was having from his doing my lung surgery with a robot. Being on this forum has really been wonderful. I was directed to my present surgeon through someone's suggestion in here. Dr. Pommier is now my doctor, and he is a leading specialist in this type of cancer. He knew on the first visit why I was in such pain. He also knew about DIPNECH and diagnosed me with it, putting me on the daily shots per my request, as opposed to the monthly. He wants me to now start taking the IM version.
May I ask, where did your husband's cancer first present, and how was it found? Also how did the doctors find it this time? I read he has been on the shots, were they monitoring him with CAT scans every year?Thank you for your wise advice. Eager to hear more about your husband's case. Prayers to you both ! 💕

@nannybb Ron's first tumor was between the illeum and bowel. He had several colonoscopys due to polyps. Our dr saw a shadow and refered us to a surgeon. No one suspected cancer. They took out 1/3 of his colon. The surgeon cried when she told us. At that time there was no medication or treatment. We were just sent home. He had scans every 3 months and then 6 months and then yearly for 10-12 years with no indication of tumors. So he decided to stop checking December 31, 2022 he was spitting up a clear liquid for several hours so we went to the ER. The dr ordered a CAT scan and informed us that the cancer was back. That led to several biopsies and scans. He started on Lanriotide in January 2023 and has been stable until the scans last week. We had put off the 5-6 month scan because we winter in AZ. He can get his Lanriotide at Mayo Scottsdale so it works for us to go there. He is 82 years old and has been very active physically through the past 3 years. Unfortunately in November he developed AFib with a crisis response, had a pacemaker put in early March and his lung was nicked and ended up 20% collapsed. We were so hopeful for a stable report last Tuesday. We remind ourselves that he has lived with this cancer for 31 years and had a very normal life. Our prayer is that the PRRT will stabilize him again and he can go back to doing his 100 pushups a day!! We truly trust our doctors at Mayo. We believe cancer is a family affair and work together as much as we can. Hope this information helps!! Prayers for you and your family as well.

@rkklinger That is one amazing story!
So he stopped going for scans.....am I understanding you correctly? And he did not start the shots until about 3-4 years ago? He is so brave to be going for PRRT, after all the other uphill battles. The one thing I am hearing over and over in my head is to go back to exercising. Which is what he has been doing. That is what I have always done in the past with other injuries, and I got myself back. My family is not taking this cancer as serious as I wish they would. I have been in so much pain for 10 months. Tell your husband he is an tremendous, amazing inspiration. You are a wonderful wife. My prayers go out to you both. Thank you so much for answering my questions. 💕

@nannybb Yes he did stop scans after 10-12 years. But remember at that time there wasn't much information and no treatment for NETS. In retrospect, there were a couple of times he had some pains that probably were connected to the tumors growing but he was overall pretty healthy. Exercise is important but also difficult to do if you aren't feeling well. I understand how you feel about your family. Because it has been so long for Ron, our kids don't always take it as seriously as I wish they would. Their dad still does everything he has always done. Generally they don't see him when he has had issues with food. They are more concerned now after finding out that the tumors are increasing. I keep them informed as Ron really doesn't like to talk about it.
Please keep in touch. I've found Connect to be very helpful for me to educate myself on NETS as well as the emotional support!! Prayers will continue for you. Thanks for connecting!

@rkklinger Please don't think I was judging him for not continuing the scans. My problem is my doctor has not ordered any scans since the surgery. He is just trying to get me to switch to the other form of the shot.
You mentioned your husband having "issues with food." Can you expand on that statement please? I don't know if I mentioned it or not, but food is a big issue for me as well. I drink alot of my meals...in that, I do protein shakes etc. I think I told you I had several inches removed from my intestines. I was told it was for diverticulitis. I was having horrible pains then too. And you are right. I am sure not much at all was knows about this form of cancer when your husband first was diagnosed. There STILL is not much know by general cancer surgeons. Thank you again for answering my questions. 💕

@nannybb No worries -- it never crossed my mind that there was any judging. As for the food issues, there have not been any answers as to why it happens. He gets a sharp pain on the left side (drs think it has to do with the pancreas not working properly). We keep track of what he ate and how long the pain lasts. There is no consistency at all. One day he eats french fries and is fine. The next day he has fries, he has pain. Our dr suggested he use GasX. So he takes 2 GasX pills and has to lie on his side directly on the pain. If he is able to do that, it goes away within 20 minutes or less. Unfortunately on our flight back to MN from AZ, he got the pain. He took the pills but was unable to lie down. It lasted 2.5 hrs of our 3 hr flight. Nothing makes sense!!We also work with a nutritionist from Mayo Oncology. That has been overall helpful but hasn't helped with any answers for this. I think I asked this before, but hope that you are working with a NETS specialist. It is so important!!

@rkklinger Thank you for your answers. I asked about the food issue because I only fix meals for one...me. I'm not good at eating properly, partly because it's just not fun. I've never been a big vegetable eater. I'm going to try to do better in that regard, but the other thing is, one "specialist" aka foodie, tells you something is good for you, and you find yourself reading another article that says to back away from the exact same food. I have never figured out who "they" are, but I think "they" are driving me crazy. Seriously, I have a pain in my left lower quadrant that is not going away. I finally was in so much pain yesterday, I went in to the ER. There was blood and other findings in my urine. I sent a text to my doctor's nurse and they got me an appt. for Thursday. Hallelujah! It could have something to do with the shots. I'm hoping not. They also did a CT and said all was well at my cancer sites. They do not seem to be growing. My heart is slightly enlarged from the last time they looked at it. I've got an appt. for an echo. My heart rhythm has been off for at least a year.
Yes, I found a NETs specialist (surgeon) I just need a NETs oncologist. I have a referral for one, but so far have heard nothing. I'm going to ask about a nutritionist. That's a good idea! Wondering, as usual, what does your oncologist do, that having just a NETs specialist surgeon would not be able to do? Blessings 💕