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Stage 4 Carcinoid tumor
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
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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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1 ReactionThey aren't doing anything. When my GP found the 0.6 cortisol level, and I was having terrible attacks. She prescribed ativan and muscle relaxers. I'm on bovine gland, and feel some better. I know this is serious and needs to be monitored. Nothing. I have to ask for blood work.
Over the years, once in awhile a doctor will suggest Metamucil, to bulk up the stool with and hopefully less loose stools. Talk with your doctor, because a couple have varied with how it is mixed up. Good Luck, Be Blessed.
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2 ReactionsDear Lisanewell69,
Thank you for the response, I am going back to the Dr today with hubby will definately asked about the product.
Kind Regards
Maré
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1 ReactionHi,
I will definitely come back to you.
Thank you
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1 ReactionHi,
I agree this site is beyond great. Since I joined am I more informed, Amazing that doctors don't share this information?
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2 ReactionsHi,
I've tried the oncologist, went there with a list of questions (with hubby) maybe that was a mistake, and the Dr, answer most of my questions with there will be bad and good days. If the diaree is out of hand, then it is a bad day. If his legs are swollen and painful (another bad day).
However, this site is great, The information that was shared by different people is very helpful.
I will try again with the oncologist, hopefully will they be more accommodating and helpful
Kind Regards
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1 ReactionThank you, such a relief to hear from people that understand. I am truly blessed since I joined this support forum.
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4 ReactionsHats off to the Mayo Clinic they do go all out to keep people informed weather they are a patient or not
Good luck to you and your family
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2 ReactionsHello,
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.