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.

kim2022 | @kim2022 | Mar 6, 2023

Have you been able to talk to someone about palliative care? They have been a huge support for me.

badi | @badi | Mar 6, 2023

No, but I will definitely try and contact them to assist me. Thank you

Teresa, Volunteer Mentor | @hopeful33250 | Mar 6, 2023

Hello @badi and welcome to Mayo Clinic Connect. It sounds as if your husband's journey with NETs has been a difficult one.

Have you considered consulting with a NETs specialist? General oncologists are not always well-versed in the treatment of NETs. Here is a listing of NET specialists, from the Carcinoid Cancer Foundation. If you are not able to have an in-person consultation, you might consider a virtual consultation.

--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
You were asking about help with diarrhea. While I've never had that problem, I have heard of a product called, Enterade, which others have used and claim that it helps. It is my understanding that it can only be purchased online. Here is information regarding this product, https://enterade.com/.

PRRT chemotherapy is the latest type of chemotherapy used for NETs. Here is some information about PRRT:

--PRRT Therapy
https://www.carcinoid.org/2018/07/26/peptide-receptor-radionuclide-therapy-prrt-updates-and-locations/
Has PRRT therapy been considered by his current medical team?

kellysg | @kellysg | Mar 7, 2023

@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!

sophiarose | @sophiarose | Mar 7, 2023

When I was diagnosed that my NET had come back 2 1/2 years after my liver resection
I was shocked!!! I had no symptoms!!! I was feeling great!!!
My oncologist told me I had to go on Lanreotide to slow down the growth of the tumors it hopefully shrink them
I had a very bad reaction to Lanreotide it gave me severe diarrhea and flashing to the point of sweat pouring off me from head to toes
I barely left my house and when I did I wore a diaper
I did 3 injections 1 every 28 days and since the oncologist insisted it wasn’t from the Lanreotide he put me on Creon which made me sicker I begged and he didn’t listen
I found a new doctor one who did listen
She put me on octreotide
So far I had 7 injections
1 every 28 days
My diarrhea is gone from the beginning and my flashing is still there but nowhere like it was
Neither drug worked on keeping the tumors from growing or multiplying so I just had a liver embolization done
Don’t know the outcome of that yet
I hope this help with giving some direction
I wish your husband all the best
This site is s great force of hope snd direction
Get him on board
Good luck

badi | @badi | Mar 7, 2023

In reply to @hopeful33250 "Hello @badi and welcome to Mayo Clinic Connect. It sounds as if your husband's journey with..." + (show)

Thank you for the response. I will contact a NET Specialist - I am really
sad that I did not join the support group earlier, however, I do believe
everything happens for a reason. I am just going to believe that this
information is a perfect time.

Will keep you posted, after we saw the NET Specialist. I just wonder why
the oncologist never referred us.

Kind Regards

badi | @badi | Mar 7, 2023

In reply to @kim2022 "Have you been able to talk to someone about palliative care? They have been a huge..." + (show)

Hi,

Hubby is still refusing to accept that both of us will need some sort of assistance. I just need to mention a nurse and then he said not yet.
They helped a lot with my mother and his father but he is still refusing.

I just have to hang in there for a while but we have hospice in Empangeni KZN SA that will assist us.

Thank you for all the advice.

badi | @badi | Mar 7, 2023

In reply to @kellysg "@badi I'm a 59 year old female, and I, too, am Stage IV Carcinoid. My original..." + (show)

Hi,

Thank you for the information, it really boosts my spirit to read that you were diagnosed in 2007 and it seems you went through a rough time, but you are still with us. We are married for 40 years and retirement is at the end of this year. Your message gives me hope that there are other people that have similar if not exactly the same symptoms.

I did not know about the PRRT treatment option. Will asked the Dr. and keep you posted.

kellysg | @kellysg | Mar 7, 2023

Yes, please keep me posted about the PRRT. My experience with the treatment was positive, with the only side effects being fatigue, which got a little worse with each one, and mild hair loss.

Hope goes a long way in our journey! Hugs and love to you as a caregiver because I truly believe it's just as hard, if not harder, for you than it is for the patient.

Feel free to reach out any time with questions or just needing support. We, on this forum, got you covered 🥰