Stage 4 Carcinoid tumor

Hello,
In May '22, after surgery to remove a tumor in my right lung and a subcutaneous nodule on my right side. The diagnosis NET, stage 4, incurable. I had chemo infusions every 3 weeks -- carboplatin, etoposide, atezolizumab and triaciclib -- for two cycles, then a CT scan. The scan showed no new cancer but the subcutaneous nodules had increased in number and were increasingly painful to the touch. They are too small to light up on a scan, apparently. I had two more cycles of chemo infusions after that, then more scans. which showed no new cancer. But the nodules were, and are, still there. My oncologist recommended no more infusions at that time, but an injection every 28 days of octreotide. After a PET scan in Jan '23 showed no changes, he recommended everolimus, an oral chemo taken every day in pill form. I was finally approved for the no-cost program at Novartis for this med, which otherwise had a co-pay of $2100 a month, and will start taking it this week.

It sounds as if your husband's treatment is following about the same progression as mine. I'm sorry your doctors are not as forthcoming with information as you'd like them to be. I feel very fortunate to be working with the oncology team at the cancer hospital here in Chapel Hill, NC. I hope you're able to get better answers and info as time goes on. Don't ever feel like you shouldn't walk in with a list of questions! Best of luck to you and your husband.

Hello,
In May '22, after surgery to remove a tumor in my right lung and a subcutaneous nodule on my right side. The diagnosis NET, stage 4, incurable. I had chemo infusions every 3 weeks -- carboplatin, etoposide, atezolizumab and triaciclib -- for two cycles, then a CT scan. The scan showed no new cancer but the subcutaneous nodules had increased in number and were increasingly painful to the touch. They are too small to light up on a scan, apparently. I had two more cycles of chemo infusions after that, then more scans. which showed no new cancer. But the nodules were, and are, still there. My oncologist recommended no more infusions at that time, but an injection every 28 days of octreotide. After a PET scan in Jan '23 showed no changes, he recommended everolimus, an oral chemo taken every day in pill form. I was finally approved for the no-cost program at Novartis for this med, which otherwise had a co-pay of $2100 a month, and will start taking it this week.

It sounds as if your husband's treatment is following about the same progression as mine. I'm sorry your doctors are not as forthcoming with information as you'd like them to be. I feel very fortunate to be working with the oncology team at the cancer hospital here in Chapel Hill, NC. I hope you're able to get better answers and info as time goes on. Don't ever feel like you shouldn't walk in with a list of questions! Best of luck to you and your husband.

Hi Larenn,
May I ask how large your lung tumor and subcutaneous nodule were? I have a 2mm nodule in my left lung, elevated Chromogranin A (off PPI's for 6+ weeks thru repeated testing and elevated each time), elevated normetanephrine and metanephrine levels, but so far normal 5HIAA and "clear" CT w/dye scan from neck thru rectum (except for lung nodule mentioned and previously known thyroid nodules). I have enlarged lymph nodes on jaw line that mostly stay,but sometimes decrease in size only to increase again. I too have subcutaneous nodule over left rib cage (8-10mm wide?) and numerous ones on both sides of shins and above outside ankle bones. Ultrasound found some larger ones deeper in as well. But no one seems concerned about them or the lung nodule. Oncologist said yes labs are elevated but lung nodule not a NET because it's a "calcified granuloma" and no other NET tumors found so to come back in 1 yr for another scan or if carcinoid symptoms (I have all of them!) get worse. Meanwhile new neurologist is doing labs for paraneoplastic tumor/conditions as well as movement disorders. She said sometimes cancer shows up neurologically first. So I'm concerned all that is connected to the NET testing already done. I've been going downhill for 1.5 yrs, but especially in last 6 months as dyspnea and movement intolerance increasing to point I'm crawling up steps and can't do more than 1 thing before needing to sit & rest.

What shot did your husband get

Hi Larenn,
May I ask how large your lung tumor and subcutaneous nodule were? I have a 2mm nodule in my left lung, elevated Chromogranin A (off PPI's for 6+ weeks thru repeated testing and elevated each time), elevated normetanephrine and metanephrine levels, but so far normal 5HIAA and "clear" CT w/dye scan from neck thru rectum (except for lung nodule mentioned and previously known thyroid nodules). I have enlarged lymph nodes on jaw line that mostly stay,but sometimes decrease in size only to increase again. I too have subcutaneous nodule over left rib cage (8-10mm wide?) and numerous ones on both sides of shins and above outside ankle bones. Ultrasound found some larger ones deeper in as well. But no one seems concerned about them or the lung nodule. Oncologist said yes labs are elevated but lung nodule not a NET because it's a "calcified granuloma" and no other NET tumors found so to come back in 1 yr for another scan or if carcinoid symptoms (I have all of them!) get worse. Meanwhile new neurologist is doing labs for paraneoplastic tumor/conditions as well as movement disorders. She said sometimes cancer shows up neurologically first. So I'm concerned all that is connected to the NET testing already done. I've been going downhill for 1.5 yrs, but especially in last 6 months as dyspnea and movement intolerance increasing to point I'm crawling up steps and can't do more than 1 thing before needing to sit & rest.

Hi,

Sandostation Octreotide 30mg. He had the last one two weeks ago on a Friday. I was thinking we not going to see Monday the following week together. He had bad bad diareee and no strength or energy. He only got better about a week later. The diaree seems to be a ongoing problem.