Carcinoid syndrome; NET not found

While my tumors have been located and biopsies and I’m on my seventh injection of Lanreotide I struggle with symptoms of the disease. Fatigue, dizziness, shortness of breath, chest/tumor pains of varying thresholds yet no doctors have said definitely if I have carcinoid syndrome. It’s always could be the medications, could be the disease, could be still recovering from chemotherapy/radiation, “we’er really not sure but we can treat the symptoms”. My tumors are non operable with a diagnosis of stage 3 Large Cell Lung NETs that has metastasize into my lymph nodes.
I struggle daily with pain and symptom management but only because I think some of the medications are more symptomatic than that of the decease. One of the hardest parts to manage is that my circle of family, friends, and outside interest keep getting smaller. I have replaced a highly successful work environment for a somewhat dysfunctional medical environment.
Dysfunctional only because of nature of NETs.
Be blessed and may your journey be filled with positive results.

I have been on this journey for a short time, so I am not qualified to give advice. I was lucky enough to have my primary physician and my gastroenterologist in my corner so we came to my diagnosis after five months. Very quick and not the norm. However, before the doctor did a PET scan, I knew I had carcinoid syndrome/tumors. The symptoms were textbook and my CGa was 2480. I have had two PET scans in the last 8 months and they could not find any tumors. My Cga is in the normal range for the last 3 months. My oncologist says they are micro-tumors and due to the symptoms, they know they are there. The Lanreotide can be difficult on your system. I believe that if you want to keep these tumors, no matter their size, at bay you have to stay on the Lanreotide or whatever chemo they have you on. It will save your life. Modifying your diet to lean proteins will help especially around the injection time. I confess that I am not always good at the diet part. Since I get my injections every three weeks, my turnaround is quick. For cd1b hang in there, I have not had to walk in the path or suffer through prolonged chemo or radiation that you have endured. My heart and prayers are with you. For willowme1963, my current oncologist has another patient on Lanreotide for over 15 years. He is doing well, like all of us puts up with the pain, flushing, and dizziness at times. Please know you are not alone and I am thinking of you and sending heartfelt prayers. It isn't something we signed up for but we must persevere. Our treatments might help someone else. There is not a cure...yet! But we can hope someday they will find one for the family of neuroendocrine tumors.

I have been going through the same thing! Symptoms but I get no answers. My doctors told me very hard to diagnose Neuroendocrin/carcinoid tumors, especially if outside the intestine. I've been to Endocrinologist who did every test possible and she was wonderful. She truly believes it is GI and told me to keep going and get as many opinions as needed. My GI just told me I'm fine even though my blood work wasn't normal for the what he ordered. So, instead of going from doctor to doctor and bloodwork after bloodwork, I checked out the Prenuvo Scan in California that is suppose to pick up any tumor anywhere, and I'm sure other problems. I just want an answer, good or bad, and if there is something, then it can be treated and hopefully the symptoms will subside. I heard most doctors don't think this scan is for real, but at this point I just want answers. I found out about this when I read about Maria Menounos who was dealing with the same and all her scans and ultrasounds came out normal. She did this scan and it found stage 2 pancreatic cancer. The only doctor standing behind me is my Endocrinologist and she feels that I'm doing the right thing. Remember, it's your body and trust your instinct. We need to be our own advocate for our health. Wish me luck and I will post the results later in October. Don't get discouraged willowme1963, just keep going to get answers. We know what we are going through and have to live with these crazy symptoms!

Prayers and we'll wishes for REAL results and answers! Thank you so much for sharing everyone and will keep pressing on.

Hi Kathy,

My sister just started her Lanreotide injections two months ago. After her first one, she did very well, but she had her second one this month and she was really in a lot of pain and not feeling well at all. Almost a week later. Does that sound about right, I wasn’t sure with the lanreotide injection if you would have symptoms immediately or if that could happen at a later date. She has gone to an appointment to see her pain management team, but she is feeling very defeated, and does not want to have the injection if it’s going to cause her to feel this way , I’m praying that she will not give up but I know that I am not the one going through it. I just didn’t know if maybe you could tell me how the injection makes you feel after you have it. Thank you in advance for your help.

I am so sorry for her pain, but it is not unusual. However, it does subside after about a week. Tell her this is not a sprint, it is a marathon, and she will feel better after 6-8 days. I know it is difficult, but I also know the Lanreotide is a wonderful drug. The amount of pain I was having before I started Lanreotide was off the charts. I lost twenty-two pounds in a short amount of time due to the pain and severe indigestion. Pounds I did not have since I only weighed 122lbs to start.

Compared to infusion chemo and radiation, Lanreotide is a walk in the park. Go to Facebook or even just Google 'Ronny Allan, neuroendocrine cancer survivor' and you will meet this courageous man who has endured this type of cancer for about 15 years. He has had surgeries and other interventions as his cancer was more advanced when he started, but he is still alive and enjoys life because he has watched others die from this family of cancers.

When I get my injection every 3 weeks, the second day is very painful, sometimes the third day, as well. The next 3-4 days shows some improvement, but still a bit of pain. You have to be aware that this will happen, but it also lessens as the first week goes on. The flushing gets less, as well. The next ten to twelve days are pretty good, a bit of mild pain occasionally. By the end of my third week, the pain slowly returns and the flushing is very evident. Cancer is a tough diagnosis, the treatment is tough, again compared to other treatments, the Lanreotide is not bad.

Tell her to never give up. Give it some time and realize that living with this disease is so much better than any other cancer treatment or diagnosis. Neuroendocrine cancers, Carcinoid cancers can be survivorable if caught fairly early. I take joy in being present. Also knowing that eating small meals several times a day, lean and nutritious help as well. Sending prayers, love and blessings.

She has a well-differentiated grade 3 PNET that metastases to the liver. There were quite a few lessons on her liver and the tumor is located in the tail of her pancreas. The Lanreotide injection was the best route for her at this time. She has a wonderful oncologist. We have been told by several doctors that this is an incurable cancer. It has definitely been a rough time. Her husband passed away unexpectedly in February and she was diagnosed in May. Thank you for your encouragement and prayers. We certainly need them. ♥️

Hi Meandmysis,
Your sister is definitely going through a lot right now. My condolences on the loss of her husband. As many have stated, such a difficult cancer to correctly diagnose and treat. Yes, it is incurable but treatable. There are several cancers like ours that can be treated, just no cure in sight for now. Ours, however, is so difficult to diagnose.

It is up to us to look beyond these and place our faith and prayers in God and the future. More and more people are being diagnosed with carcinoid/neuroendocrine tumors. I believe that the researchers are starting to pay more attention to it. They do like a mystery and I firmly and completely believe they will find, if not a complete cure, a better treatment or add-on treatment that will make all our lives easier.

I am so glad your Sister has you in her corner. My first husband died over 20 years ago after 32 years of marriage. But, I was fortunate and met a lovely man. We just celebrated our twentieth anniversary. Never lose faith. I know how hard that can be, but prayer and good deeds to help others put things in perspective. My late husband had a saying, "Good deeds are our purest prayers". A good deed which could just be a phone call to check on a friend, moves your thoughts away from your problems. It has helped me over the years to deal with several events in my life. Each day is a blessing to me. No matter how I feel physically, each day brings a blessing. YOU stay strong too. It hurts to see someone you love in pain. Stay strong sweetie, we are praying for you too.

Hi Teralto,
Wanted to wish you luck in finding answers to your symptoms. I have read about the Prenuvo Scan and it seems to offer hope to many people. Have you had a proper PET scan to search for the neuroendocrine/carcinoid tumors? Although, that too can come out normal.

I just wanted you to know we all praying for a good outcome of your testing.

Blessings to you and your family.

Kathy thank you so much! ♥️ I needed this.