1. < Neuroendocrine Tumors (NETs)

Stage 4 Carcinoid tumor

Posted by badi @badi, Mar 6, 2023

To make a very long story short. Hubby was diagnosed in Oct 2022 with a carcinoid tumor. Dr removed a mass from the small intestine. He had a Pet Scan in November 2022 and the results were not good.
Stage 4 - Areas affected
Abdomen, Large scattered mesenteric lesions are noted
Mass lesion noted in the tail of the pancreas
Musculoskeletal System - Multiple dotatate avid skeletal lesions are noted = Starnum, left 4th rib, right acetabulum, Body of C3, C6 and T3
Head and Neck - SUV - 20.57 measuring 1.34cm x 1.13cm
Thorax - donate avid mass lesions are noted in close relation to the heart and also the right bilar, left hilar, and descending aorta medically
Conclusion of the PET/CT - Extensive dotatate avid lesions are noted in the tail of the pancreas, small bowel, mesentery, heart, mediastinum and atasseous sites.
To put in language that I understood from the Oncologist, bone cancer areas affected his neck, left ear, hips, chest and legs (bone).
He received an injection (I still don't know what injection it is) as Dr just explained that it is to slow the growth of cancer.
He had 4 injections so far one per month.

My concern is that hubby is getting weaker by the day in and out of the hospital with diaree. Last two weeks refuse to go back to hospital, He is losing weight and stamina. Can't even move without any assistance.

Is there a different treatment than the injection and what are the best medicines for diaree, I have tried everything change of diet, only liquids at one stage, and drinking supplements, but nothing seems to stay inside his body.

I would really appreciate any advice or suggestion. Thank you so much

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

larenn | @larenn | Mar 9, 2023

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.

REPLY
2 replies
badi | @badi | Mar 11, 2023
In reply to @larenn "Hello, In May '22, after surgery to remove a tumor in my right lung and a..." + (show)
@larenn

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.

Jump to this post

Hi

Thank you for the response, jip I think you are right more or less on the same journey with the injections. He is back in the hospital after lots of fighting (which I feel so guilty about), and some solid advice from the general specialist to treat his ongoing diarrhea. They noticed that he had a lack of oxygen in his blood. He is currently getting some blood.

Kind Regards

REPLY
lisa812 | @lisa812 | Mar 12, 2023
In reply to @larenn "Hello, In May '22, after surgery to remove a tumor in my right lung and a..." + (show)
@larenn

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.

Jump to this post

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.

REPLY
2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 25, 2023
In reply to @lisa812 "Hi Larenn, May I ask how large your lung tumor and subcutaneous nodule were? I have..." + (show)
@lisa812

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.

Jump to this post

@lisa812, it looks like you've had thorough testing and follow through for NETs, but that you are still concerned, especially since you have continued symptoms that are affecting your quality of life. I'm tagging @hopeful33250 to see what she might suggest.

I think she'll ask if you've been to an oncologist who specializes in neuroendocrine tumors. Many members here have shared the trials and tribulations of the long diagnosis process before getting their NETs confirmed. I also wonder if the symptoms you are experiencing might be related to something other than NETs. Have other conditions been ruled out?

REPLY
sophiarose | @sophiarose | Mar 25, 2023

What shot did your husband get

REPLY
1 reply
badi | @badi | Mar 27, 2023
In reply to @sophiarose "What shot did your husband get" + (show)
@sophiarose

What shot did your husband get

Jump to this post

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.

REPLY
1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 27, 2023
In reply to @lisa812 "Hi Larenn, May I ask how large your lung tumor and subcutaneous nodule were? I have..." + (show)
@lisa812

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.

Jump to this post

Hello @lisa812

I would like to join Colleen, @colleenyoung, in welcoming you to the NETs discussion on Mayo Clinic Connect. I am sorry to hear of the difficult symptoms you are experiencing. I can tell that the breathing problem, as well as the pain, are difficult to deal with.

You do not mention that type of doctor you are seeing, however, it would be helpful for you to have a consultation with a NET specialist. NET specialists are oncologists who have special training and expertise in the area of this rare form of cancer and best able to offer treatment modalities that are state-of-the-art. If you are not nearby a NET specialist, I would encourage you to at least seek a virtual appointment.

If you live near one of the Mayo Clinic campuses, Minnesota, Arizona or Florida, they all have NET specialists who may be able to help you. Here is a link to with directions on how to seek an appointment http://mayocl.in/1mtmR63.

If, for any reason, you are not able to get an appointment at Mayo, here is a list of NET specialists in other states and throughout the world,
--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
Are you willing to seek a second opinion?

REPLY
sophiarose | @sophiarose | Mar 27, 2023
In reply to @badi "Hi, Sandostation Octreotide 30mg. He had the last one two weeks ago on a Friday. I..." + (show)
@badi

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.

Jump to this post

I am so sorry for you and your husband
I am on 10mg of Ocreotide and it takes me 10 to 12 days to feel normal after my injection only from my waist up
From my waist down my legs have continual bad pain and no strength
They do say after your body gets use to the drug it gets better
Maybe talk to the dr and see if they can start a little lower and up it gradually
Drink water until you float away and I can’t have any sugar at all
Good luck

REPLY
badi | @badi | Mar 28, 2023

Hi,

Thank you for the response, at least I know that he is not the only one suffering and that the symptoms are "normal". The diaree keeps on being a problem. The Dr. actually up the dose after his last hospital visit.

REPLY
patrick031621 | @patrick031621 | Mar 28, 2023

I tried liquids and liquid supplements for a while and they don't work. What I found was the best was protein especially concentrated like it is in sardines and salmon. I found that the best lunch to avoid or minimize bowel issue is a can of sardines. I have no trouble with having them with either canned in water or olive oil but it may make a difference with other individuals.

REPLY
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