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Is everyone with pNETs on creon?
Hello. I’m thinking this may have been discussed before. Sorry if I’m asking an old question
Is everyone with a pNET on Creon. Pancreatic enzymes always have looked good on labs Was told that’s normal but the body isn’t using them correctly. That’s why there is a need to take Creon Recently, before PRRT, blood sugars have increased to above 450. I have read Creon can contribute to that Now on Humalog and Lantus
Has anyone else experienced this? Could just be the pancreas Wonder with treatment if we could come off insulin and even Creon
Background Diagnosed with 3 mm pNET to body of pancreas that is also in the liver and some bone. Starting symptoms 3years ago was uncontrollable diarrhea and weight loss. Was put on Creon immediately. Two years Lanreotide and just started PRRT therapy.
Thank you everyone 😊💕
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Hello. My husband is in the same condition as you but a little worse. He was lucky to be diagnosed within a couple months and had lost 20 pounds, but was very sick. He is not on creon as it did not work for him and made him sicker. He has been on Cap/Tem for 13 rounds plus he’s been on a monthly injection of lanreotide and we are wondering if you have had this monthly injection as well.
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3 ReactionsI have only been on CAPTEM. Nothing else.
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3 ReactionsHello. By the time he was diagnosed he had lost almost 40 lbs. He has only been on Lanreotide monthly and creon with meals. Just recently he has had his first round of PRRT Feeling better than he has in awhile. It took about a week after treatment to feel this good
CAP/TEM has never been offered as an option yet Is this chemo therapy? Is it pill form? I see a lot of people with the same diagnosis are on this. I wonder why it wasn’t an option for us I guess it’s worth asking the Dr
Thank you for the reply
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2 ReactionsYes, Cap/Tem is chemo in oral form. Ten days of Cap and day 11 through 14 with Tem and anti nausea meds added. Fourteen days off following with one monthly lanreotide injection during the days off of chemo. How was the PRRT? It has not been offered to my husband and I’m curious why.
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1 ReactionI’m not sure why things are offered in a different order
Some things I read say Lanreotide is the first line of treatment and now PRRT can be
He has felt really good. Pain level is way down. He was having a lot of pain. I think the tumors might have been pressing on a nerve. The PRRT is suppose to shrink them. So I’m hoping that’s the case. He was very exhausted for about a week after treatment
Treatment is every other month for 8 months. Total of 4 treatments
The one on his pancreas was only 2cm. Biggest but multiple on his liver I think was 5 cm. I’ve heard of people having a lot larger with no pain. Just shows everyone is so different
Are you seeing a specialist?
We are not at this time. I still will ask about the oral chemo Still hopeful this PRRT will stabilize and shrink the tumors for a better quality of life for him.
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2 ReactionsOur Dr. was mentored by a NET specialist but doesn’t research it so isn’t technically a NET specialist. He is treating a high percentage of patients with NET. He encouraged us to seek out a second opinion with a specialist and we are in the process of doing that. Good luck to you both.
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4 ReactionsMy CAPTEM treatment was the same minus the injections. The last two months have only been capecitabine. My new scans are Friday. We went 4 months between scans to see how the capecitabine did on its own. I am ok living with the cancer in me as long as we can manage it. I am in no rush to have surgery.
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2 ReactionsHi . I have small bowel net and did start on creon due to pale stools suggesting i wasnt absorbing all the nutrients in food . After 1 month I decided to stop as I felt a bit unwell. Whether it was the creon I don't know but I thought that I may have over exaggerated the pale stools as sometime they were ok . After discussing with my oncologist he agreed we pause for a while.
I understand they are just a substitute enzymes produced from pigs pancreas so should be fine to take.
I would check the creon website for sll the details of side effects etc.
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1 ReactionHello @janmar1960 and welcome to the NETs discussion on Mayo Connect. I appreciate you adding to this discussion group with your experiences.
As you are new to Connect, please share a bit about your history with NETs. For example, how long ago were you diagnosed? What type of treatments have you had, such as surgery, monthly injections, etc.
I look forward to getting to know you.
I was diagnosed Oct 23 after 7 yrs being investigated and diagnosed with IBS. I have slow growing 1-2% well differentiated . Stated on lanreotide late nov 23 . It’s stage 4 so no surgery possible . I’m still trying to process all the implications and though I feel quite well I’ve got to be careful what I eat . Im resident in the Uk and I’m due a second ct scan in may after treatment started so I hope it shows it is working. Last scan was inconclusive as it showed mall growth but no further spread. Processing all this has been difficult but I must remain positive whilst I’m feeling ok .