1. < Neuroendocrine Tumors (NETs)
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Stage 4 Carcinoid tumor: What treatments have you had?

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.

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kellysg | @kellysg | 1 day ago
In reply to @jsudjian "did you have flushing, was it constant, was face and head bad itchy always" + (show)
Profile picture for jsudjian @jsudjian

did you have flushing, was it constant, was face and head bad itchy always

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I have never really experienced much flushing, only occasionally. And I have never had any itchiness. Not sure what's going with that...
Just keep studying and advocating! This feed is a very good place to ask questions and share experiences. Together we will get through it!❤️

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nannybb | @nannybb | 1 day ago
In reply to @larenn "Hello, In May '22, after surgery to remove a tumor in my right lung and a..." + (show)
Profile picture for larenn @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.

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One thing you mentioned stood out for me. I had a carcinoid tumor removed because it began to grow. They also removed 5 lymph nodes. Before surgery, they did a PET. As far as I was told, there were no other areas of concern at that time. When I went to post-op, the surgeon told me I now have more nodules in both lungs. They are small, so he is just going to watch them for now. You said, "Nodules too small to light up on scan." I can't figure out how a CAT scan can reveal more, but a PET (without contrast) missed additional nodules. Is this why? Too small?

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jsudjian | @jsudjian | 1 day ago
In reply to @sophiarose "I am so sorry for you and your husband I am on 10mg of Ocreotide and..." + (show)
Profile picture for sophiarose @sophiarose

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

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did you have facial flushing, was it constant, was there bad itching

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jsudjian | @jsudjian | 1 day ago
In reply to @kathyalbert501 "Carcinoid cancer is so difficult to diagnose. I’m so sorry that you and your husband are..." + (show)
Profile picture for kathyalbert501 @kathyalbert501

Carcinoid cancer is so difficult to diagnose. I’m so sorry that you and your husband are going through this situation. This website has wonderful information and resources for you. The people are first rate.

I was recently diagnosed after being besieged by various symptoms. Luckily it appears we have got mine at an early stage and undergoing treatment every three weeks with Lanreotide.

Two things in my suggestion box are #1-contact your oncology staff. Many have nurse navigators to answer your questions and get you appointments with a nutritionist, pain management etc. #2-make an appointment with the oncologist just for you. Make a list of everything you want to ask, and be blunt, proactive. See if you can take a family member or friend so you have a backup.

Go to Carcinoid.org or have a friend help you with the internet stuff. But first contact the oncology office.

Sending prayers and strength for both of you.

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did you have flushing, was it constant, did face and head itch bad, any eczema

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jsudjian | @jsudjian | 1 day ago
In reply to @kellysg "@badi I'm a 59 year old female, and I, too, am Stage IV Carcinoid. My original..." + (show)
Profile picture for kellysg @kellysg

@badi
I'm a 59 year old female, and I, too, am Stage IV Carcinoid. My original diagnosis came in 2007, at which time they removed a mass involving my small intestine. Over the years it has metastisized to lymph nodes, liver, abdomen, and lastly a small lesion on my right shoulder. In late 2019, serotonin levels were continuing to elevate as well as more lesions showing up. I went thru 4 rounds of PRRT in 2020, and so far, the spreading has stopped. However my serotonin is on the rise again.

All that being said, I would suggest asking if PRRT would be a helpful treatment option.

I experience bouts with diarrhea, and my monthly Sandostatin, now switched to Lanreotide, injections seem to make it worse for a few days, sometimes a week. Imodium is a regular for me.

I hope this helps, and keep researching and advocating!

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did you have flushing, was it constant, was face and head bad itchy always

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patrick031621 | @patrick031621 | Dec 27, 2024

I started this in my diet regularly which has been a great help as far as controlling bowel issues. I have snacked on complex carbohydrates when I am hungry. the best for me is raw carrots, generally baby raw carrots that I munch on when really hungry. I also do a baked potato that I slice up but i don't put anything on it except perhaps a little bit of ketchup (avoiding sour cream and other additions like melted cheese. AND lastly I will eat a can of beets. All seem to do very well. I actually hate carrots but they work so well for me I have gotten used to eating them. I have even done them as a breakfast.

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panorman3 | @panorman3 | Dec 26, 2024
In reply to @hopeful33250 "Hello @panorman3 and welcome to the NETs support group. I'm glad that you found this forum...." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @panorman3 and welcome to the NETs support group. I'm glad that you found this forum. I joined Connect when I was facing my third surgery for a NET and I found the experience of others to be very helpful in facing the next surgery. As my first surgery was in 2003, I am now a 21-year survivor of NETs.

I look forward to hearing from you again as this sounds like a new diagnosis for you. Is my understanding correct? You say in your post that your NET is too difficult to remove. Could you provide a bit more information on this? Is it the location or the type of tumor?

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Location, just found said is has been in process for ten years

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sophiarose | @sophiarose | Dec 25, 2024

If the injection is Lanreotide every 28!
I did 3 injections and had to switch to ocreotide because the diarrhea was overwhelming I couldn’t leave the house
They tried me on creon but it didn’t work
He can try Imodium
Good luck

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 25, 2024
In reply to @panorman3 ""Neuroendocrine Tumor which they say is to difficult to remove" + (show)
Profile picture for panorman3 @panorman3

"Neuroendocrine Tumor which they say is to difficult to remove

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Hello @panorman3 and welcome to the NETs support group. I'm glad that you found this forum. I joined Connect when I was facing my third surgery for a NET and I found the experience of others to be very helpful in facing the next surgery. As my first surgery was in 2003, I am now a 21-year survivor of NETs.

I look forward to hearing from you again as this sounds like a new diagnosis for you. Is my understanding correct? You say in your post that your NET is too difficult to remove. Could you provide a bit more information on this? Is it the location or the type of tumor?

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panorman3 | @panorman3 | Dec 25, 2024

"Neuroendocrine Tumor which they say is to difficult to remove

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