1. < Neuroendocrine Tumors (NETs)

Long Time Survivor With Concerns re Metastasis

Posted by gneiss50 @gneiss50, Oct 6, 2022

I had surgery at Jacksonville Mayo 12 years ago to remove a section of my upper intestine and a pile of tumors in my abdomen. They told me that my condition was metastatic, although my pain and other symptoms "magically" disappeared. Their advice was to see a local oncologist for regular check-ups, which I did for a while. I saw the Mayo oncologist 10 years ago because I was having minor symptoms, and he told me that none of their imaging tests would show anything because remaining tumors would be too small to show up. He did say that I surely had tiny tumors remaining, because they knew they were unable to get them all. those symptoms have mostly dissipated, so I appear to be cancer free, but I know I am not.

My question is to others who have metastatic conditions but remain fairly healthy. Do you have regular blood and urine tests to check the 5-HIAA and blood markers? Is there an advantage in having these tests done occasionally? For my own peace of mind, I am thinking of going back to Mayo for a complete check-up, but am not sure they would think it is necessary. Meanwhile, I am grateful that I have not had the issues that many of you have, and I appreciate your sharing your journeys with this group

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

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 16, 2023
In reply to @gneiss50 "I had my visit with MD Anderson yesterday. They used my Mayo pathology report to determine..." + (show)
@gneiss50

I had my visit with MD Anderson yesterday. They used my Mayo pathology report to determine that my tumors are well differentiated, slow growing, and not likely to change much. The doctor offered three treatment choices--do nothing but have scans regularly to measure change; try Lanreotide to shrink the tumors; try PRRT to kill/shrink the tumors. I chose Lanreotide, and will start it soon. I am relieved that. Thank you all for your advice, observations, and for sharing your own stories.

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Hello @gneiss50

I appreciate your update after your visit to MD Anderson. It sounds like you have decided on treatment with Lanreotide.

Will you continue to share how you are doing? Do you have an appointment yet for your first Lanreotide injection?

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lear | @lear | Mar 17, 2023

My metestatic carcinoid cancer was discovered by accident when my GYN was doing an endoscopic look at a tumor on the top of my cervix. It was mucoid but she found mets scattered through my mesentery. I was sent to Moffitt in FL for several years, every 3 months. Now I get my CT at the oncology center and Sandostation Lar in my hip every 28 days. No surgery done since it has already mestiasized.
My cancer was found July 13, 2006, and it is basically staying the same. I tire more easily. I have the issues that go along with it- elevated sugar, low thyoid, occasional blockage in small intestine that resolved without surgery. Thr primary is very very small in the ilium.
My question is do you have trouble sleeping? Lately at night this has been a real problem I do not have the Syndone. Id inability to sleepvassociated with carninoid b

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davisnrn | @davisnrn | Mar 17, 2023
In reply to @hopeful33250 "Hello @davisnrn and welcome to Mayo Clinic Connect. It sounds as if you have had some..." + (show)
@hopeful33250

Hello @davisnrn and welcome to Mayo Clinic Connect. It sounds as if you have had some effective treatment at Mayo Clinic. Mayo has some great NET specialists.

I am a 20-year survivor of NETs and I've had three surgeries of the upper digestive tract. No other treatment has been needed so far. You will find that each person's story of their NETs journey is quite different.

I am sorry to hear of your painful mouth sores. Does your medical team think that these will return when you begin the treatment again? I see that @bluedane has also taken Affintor (the brand name for Everolimus. I hope that he/she will join this discussion and share experiences with you.

I'm guessing that with these mouth sores, eating has been a problem. Have you lost a significant amount of weight?

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thanks for your note. always good to hear of other NET folks with good outcomes. I lost 5 lbs in a week. not sure about the week off the drug. Not sure if same problem will recur when I go back on. If so, the possibility of reducing dosage, or doing every other day at same 10mg. will give it a real try but it’s hard to feel so much worse with treatment than without any treatment. will start back on 3/28 and will stay connected to Mayo Connect. thanks again.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 17, 2023
In reply to @davisnrn "thanks for your note. always good to hear of other NET folks with good outcomes. I..." + (show)
@davisnrn

thanks for your note. always good to hear of other NET folks with good outcomes. I lost 5 lbs in a week. not sure about the week off the drug. Not sure if same problem will recur when I go back on. If so, the possibility of reducing dosage, or doing every other day at same 10mg. will give it a real try but it’s hard to feel so much worse with treatment than without any treatment. will start back on 3/28 and will stay connected to Mayo Connect. thanks again.

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Wishing you all the best, @davisnrn. I'll look forward to your updates.

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1 reply
davisnrn | @davisnrn | Mar 19, 2023
In reply to @hopeful33250 "Wishing you all the best, @davisnrn. I'll look forward to your updates." + (show)
@hopeful33250

Wishing you all the best, @davisnrn. I'll look forward to your updates.

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3 days off Everolimus and WOW my fatigue and aches are gone. Dexamethasone mouthwash and Miracle Mouthwash have helped mouth sores to start healing. i will restart drug in3 more days so hope I have better luck second time. My Mayo oncologist told me not to be afraid to stop the drug to mitigate side effects and restart when improved. So onward and upward. Sharing in case there are others with side effect worries on this drug.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 19, 2023
In reply to @davisnrn "3 days off Everolimus and WOW my fatigue and aches are gone. Dexamethasone mouthwash and Miracle..." + (show)
@davisnrn

3 days off Everolimus and WOW my fatigue and aches are gone. Dexamethasone mouthwash and Miracle Mouthwash have helped mouth sores to start healing. i will restart drug in3 more days so hope I have better luck second time. My Mayo oncologist told me not to be afraid to stop the drug to mitigate side effects and restart when improved. So onward and upward. Sharing in case there are others with side effect worries on this drug.

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That is good news, @davisnrn,

I'm glad that the two mouthwashes helped you. It is also good to know that you can take breaks from the meds when you need to. ",,,onward and upward" is a great attitude!

I look forward to hearing about your progress. Will you keep posting?

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gneiss50 | @gneiss50 | Mar 21, 2023

Hello, all my fellow NET travelers. I saw Dr. Dasari at MD Anderson. He gave me three choices to deal with my NET: do nothing, but have a scan every few months to track change; start Lanreotide treatments; start PRRT treatments. I chose the Lanreotide, and have had my first shot. Side effects have not been terrible, and are mostly gas, intestinal cramping, and today, 5 days in, burning in my stomach that is likely gas/acid. I will go back to MDA in July or have my next scan done with my local oncologist.

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1 reply
hollywood817 | @hollywood817 | Mar 22, 2023
In reply to @gneiss50 "Hello, all my fellow NET travelers. I saw Dr. Dasari at MD Anderson. He gave me..." + (show)
@gneiss50

Hello, all my fellow NET travelers. I saw Dr. Dasari at MD Anderson. He gave me three choices to deal with my NET: do nothing, but have a scan every few months to track change; start Lanreotide treatments; start PRRT treatments. I chose the Lanreotide, and have had my first shot. Side effects have not been terrible, and are mostly gas, intestinal cramping, and today, 5 days in, burning in my stomach that is likely gas/acid. I will go back to MDA in July or have my next scan done with my local oncologist.

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I'm also on Lanreotide...have had two injections so far. I have 3 TACE treatments with the first one starting next Friday. They are treating my liver in thirds...treatments on 3/31, 5/ and 5/31. 7am arrival, procedure at 1pm, release the next day around 1pm. I have similar Lanreotide symptoms, as well as itching and pain around the injection site that goes away after about a week. The plan is to have the TACE kill as many of those little cancer cells as possible then monitor via petScan and hope the Lanreotide keeps the cancer stable for as long as possible. Going to get a 3rd opinion as my current oncologist/radiation team says surgery to remove will never be an option and that doesn't sit well with me. Best of luck with your journey!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Mar 23, 2023
In reply to @hollywood817 "I'm also on Lanreotide...have had two injections so far. I have 3 TACE treatments with the..." + (show)
@hollywood817

I'm also on Lanreotide...have had two injections so far. I have 3 TACE treatments with the first one starting next Friday. They are treating my liver in thirds...treatments on 3/31, 5/ and 5/31. 7am arrival, procedure at 1pm, release the next day around 1pm. I have similar Lanreotide symptoms, as well as itching and pain around the injection site that goes away after about a week. The plan is to have the TACE kill as many of those little cancer cells as possible then monitor via petScan and hope the Lanreotide keeps the cancer stable for as long as possible. Going to get a 3rd opinion as my current oncologist/radiation team says surgery to remove will never be an option and that doesn't sit well with me. Best of luck with your journey!

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Hello @hollywood817,

Your thought about getting another opinion for possible surgery is a good idea. Are you able to get an opinion at a Mayo facility? They have three facilities in MN, FL and AZ.

I've read posts by members who were able to get surgery at Mayo when other doctors claimed it couldn't be done. Here is a link to get appointment information, http://mayocl.in/1mtmR63

I look forward to hearing how your TACE treatments are working for you. Will you be having a PET scan after the three treatments are completed?

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1 reply
hollywood817 | @hollywood817 | Mar 23, 2023
In reply to @hopeful33250 "Hello @hollywood817, Your thought about getting another opinion for possible surgery is a good idea. Are..." + (show)
@hopeful33250

Hello @hollywood817,

Your thought about getting another opinion for possible surgery is a good idea. Are you able to get an opinion at a Mayo facility? They have three facilities in MN, FL and AZ.

I've read posts by members who were able to get surgery at Mayo when other doctors claimed it couldn't be done. Here is a link to get appointment information, http://mayocl.in/1mtmR63

I look forward to hearing how your TACE treatments are working for you. Will you be having a PET scan after the three treatments are completed?

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Another PET scan post TACE treatments is the plan. Was looking at Hopkins for another opinion but will also check out link you sent for Mayo clinic. Stay well and try and enjoy the ride...nothing in life is guaranteed and I view this journey as a learning experience. In a weird way I'm excited! All the best, Tom

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