Anyone treated for NETs at Mayo Clinic in Jacksonville, FL

Posted by nigelvw @nigelvw, Dec 4, 2017

Is anyone here being treated at Mayo in Jacksonville FL?

Liked by titansmistress

@emmiel14

Hi Theresa,
Thank you for reaching out. Wow. So much has happened. Dr. Stuckey did my surgery Aug 12, removing 12" of small intestine, which contained 13 grain of sand-sized NETs. Two of 22 lymph nodes were positive for mets. I had no pain at all after the surgery! No sepsis, no c-diff. Went home Aug 17. Doing okay at first, then loss of appetite and fatigue.
On Aug 28 I had doubled over severe lower abd pain and went to a Tucson ER. They air-lifted me to Mayo Phoenix, admitted for severe colitis and two abscesses. Placed on bowel rest with infused nutrients for 5 days. Two drains, on of which was removed before I came home Sept 4. I return to May this Tues for another CT, removal of drain. labs and visit with Dr. Stuckey.
It has been a very long haul! Some days are better than others & I find myself getting somewhat impatient to feel better. Everyone says my body has been through a LOT, so I believe them.
Thanks again!

Emmie14

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@emmiel14 Hi Emmie

I do appreciate your update. You have been through a lot since August and you do need to give yourself time to recover from the Aug. 12 surgery and Aug. 28 problems. Will you have to have any follow up treatment for the NETs (like monthly shots, etc.)?

How are you doing with eating and nutrition? Are you able to eat most foods comfortably?

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Hi Theresa,
I am on a low fiber diet with Metamucil 2x/day. I'm still staying away from hard to digest foods, salads, nuts, whole wheat, tomato sauces, greasy foods, etc. I'm down 22 lbs. I don't see my oncologist until Sep 23, so will see what he recommends. I have absolutely NO clue what he will suggest, possibly a follow-up CT in a few months?
I'm tired and weak. Don't feel like doing the usual things. I really want to but my body just doesn't respond the same. I'm hoping this is a normal response, but it is getting old! I've always kept busy with lots of energy so this is really foreign to me!
Emmie

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I am 77 ……energy comes in waves….some times more spoons, other times its an effort to do anything….also on no fat or low fat …very low fibre if any , lost about 10 lbs but now stable….also diabetic with prostate cancer that has metastasized….recent shot of Lupron is causing depression to get worse….sometimes problem with gas and bloating but antacid liquid helps with that…..every day is different ….caffeine helps me but sometimes it triggers diarrhea…….I stay around my house a lot so I am near a toilet and I just put a new one in on a day with more spoons ….check " smart patients .com " and follow people with NET issues……..all in all its adjusting to a new way of living and some days its laying in bed with my border collie / australian shepard watching Turner Classic movies and praying…….its not so bad and each day I thank God and pray for others too . Peace be with you.

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@alphanumeric

I am 77 ……energy comes in waves….some times more spoons, other times its an effort to do anything….also on no fat or low fat …very low fibre if any , lost about 10 lbs but now stable….also diabetic with prostate cancer that has metastasized….recent shot of Lupron is causing depression to get worse….sometimes problem with gas and bloating but antacid liquid helps with that…..every day is different ….caffeine helps me but sometimes it triggers diarrhea…….I stay around my house a lot so I am near a toilet and I just put a new one in on a day with more spoons ….check " smart patients .com " and follow people with NET issues……..all in all its adjusting to a new way of living and some days its laying in bed with my border collie / australian shepard watching Turner Classic movies and praying…….its not so bad and each day I thank God and pray for others too . Peace be with you.

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@alphanumeric, welcome to Connect. You may also be interested in following the Prostate Cancer group here: https://connect.mayoclinic.org/group/prostate-cancer/

Do you have NETs of the prostate gland or do you have 2 cancers: prostate cancer and a NETs tumor elsewhere?

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had portion of small bowel removed here in north carolina but , NET are still in my body…..prostate cancer was removed at Mission hospital in Asheville N.C. and further treated at Proton institute in Jax Fl a couple of years ago and again last year , both cancers being treated, prostate with Lupron and NET is being monitored with blood work , both by same doctor here ……never treated at MAYO , yet ! One day at a time.

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@alphanumeric

I am 77 ……energy comes in waves….some times more spoons, other times its an effort to do anything….also on no fat or low fat …very low fibre if any , lost about 10 lbs but now stable….also diabetic with prostate cancer that has metastasized….recent shot of Lupron is causing depression to get worse….sometimes problem with gas and bloating but antacid liquid helps with that…..every day is different ….caffeine helps me but sometimes it triggers diarrhea…….I stay around my house a lot so I am near a toilet and I just put a new one in on a day with more spoons ….check " smart patients .com " and follow people with NET issues……..all in all its adjusting to a new way of living and some days its laying in bed with my border collie / australian shepard watching Turner Classic movies and praying…….its not so bad and each day I thank God and pray for others too . Peace be with you.

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@alphanumeric
I am so glad you have joined this discussion group. I so appreciate the acceptance you have developed regarding your health conditions. It can certainly be challenging to deal with energy levels changing. I'm glad you have adjusted as well as you have.

Thank you for sharing many things that have helped you. At Connect we all learn from each other and you have provided all of us with some helpful information. Peace to you as well (and to your border collie)!

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@hopeful33250

Hello @patriciagsr,

I appreciate your posting again. My surgery was a bit different from the one proposed for you in that the implant was not from my own body lipids but from a substance that was created for the implant. However, the surgery did work well (and still does). I was given a lot of prednisone after the surgery to keep down the swelling, inflammation, etc. and the neck area was wrapped with gauze. I talked with far less fatigue which wonderful!

I agree that a healthy diet is more important than supplements, even though supplements can be helpful at times.

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Hello again, I came back from my visit to Mayo in Fl last week. I will have my next surgery for the implant in Dec, I still have some fat in my vocal chord. My problem is how much saliva and phlem I have. I am taking Robinol 1 mg 3 times per day, its helping but not as I expected. I had my phlems yellow so the doctor prescribed me amoxicilin 500 mg 3 per day, but after finished my 14 day treatment the color and taste of the phlem came back so now I am taking levofloxacin 500 mg 1 per day for 5 days. Hope this controls the colour and horrible taste of my phlems. A little issue in my feeding tube but everything under control. Now I am doing my therapies at home by myself. My weight is more stable and my energy level is much better. I am taking lots of vitamin and carb supplements and that is working for me. Hope you are doing well 🙂

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@sherryboynton

Hey Teresa, it seems you are active on here…I was wondering if you knew, does Mayo Jacksonville offer PRRT?

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I know this is late but Mayo Jacksonville does have PRRT. Several of my Support group members get it.

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I guess I should introduce myself before I answer people. I am a NET patient at Mayo. It was discovered November 2018. It was in my appendix, small intestines, colon, and lymph nodes. When I was diagnosed, the oncologist (not a NET doctor) at the hospital told me to, “Get my affairs in order.”. My family and I spend too much time thinking that my death was imminent. I learned from my NET doctor at Mayo that this wasn’t the case. I tried to find a support group but wasn’t able to.
I reached out to other patients because I wanted to learn from them and started a group online.
I decided to pitch an idea of a support and learning group for Neuroendocrine Cancer to Mayo hospital. Some of the other patients and I spoke to Mayo about what we wanted. We wanted it for patients and caregivers. (It’s hard for caregivers too!) We also wanted anyone to be able to join. (We have a call in number.)
I could not have done this without the support and help from these other patients. These people have become my friends and I have learned so much from them.

The support group now meets on the first Thursday of the month at 5:30pm EST and has around 30 people who attend.

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@patriciagsr

Hello again, I came back from my visit to Mayo in Fl last week. I will have my next surgery for the implant in Dec, I still have some fat in my vocal chord. My problem is how much saliva and phlem I have. I am taking Robinol 1 mg 3 times per day, its helping but not as I expected. I had my phlems yellow so the doctor prescribed me amoxicilin 500 mg 3 per day, but after finished my 14 day treatment the color and taste of the phlem came back so now I am taking levofloxacin 500 mg 1 per day for 5 days. Hope this controls the colour and horrible taste of my phlems. A little issue in my feeding tube but everything under control. Now I am doing my therapies at home by myself. My weight is more stable and my energy level is much better. I am taking lots of vitamin and carb supplements and that is working for me. Hope you are doing well 🙂

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Hi @patriciagsr,

As it's been a while since you last posted I was wondering how you are doing. I hope you are doing better with the problems you had with saliva and the feeding tube.

Have you found help with the phlegm?

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