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.
@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)!
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.
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 🙂
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.
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 🙂
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.
I was recently diagnosed with neuroendocrine tumor/cancer - in February 2023. I’m new to all of this and have no idea what to expect. I am not receiving treatment at this time. I’m feeling lost and confused.
I was recently diagnosed with neuroendocrine tumor/cancer - in February 2023. I’m new to all of this and have no idea what to expect. I am not receiving treatment at this time. I’m feeling lost and confused.
Hello @ginnym3 and welcome to the NETs discussion on Mayo Clinic Connect. I can certainly understand you when you say, " I’m feeling lost and confused." As a 20-year survivor of NETs (I had my first surgery in 2003, then again in 2005, and my last surgery in 2016). I can easily remember the confusion that surrounded my diagnosis. In 2003, there was little in the way of support groups or good information regarding neuroendocrine tumors (NETs). I also felt lost and confused.
As you are just beginning your journey with NETs, I would encourage you to learn as much as you can about this rare form of cancer. If you google neuroendocrine tumors, you will find websites like Mayo Clinic, and The Carcinoid Cancer Foundation who will provide you with lots of good information. Knowledge is one of the keys to being proactive in your treatment.
I would also suggest that you find a NET specialist. Not all oncologists are trained in treating NETs. Mayo Clinic has some excellent NET specialists in all three of their locations (Rochester, MN, Jacksonville, FL and Phoenix, AZ). If you would like to get a consultation with Mayo here is a link with information about appointments, http://mayocl.in/1mtmR63
If for any reason you cannot get a consultation at Mayo, here is list, from the Carcinoid Cancer Foundation, of NET specialists worldwide.
--Find a Doctor https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
If you are comfortable sharing more, I would be interested in knowing where your NETs are located, what symptoms led to the diagnosis and what treatment(s) have been suggested?
I’m being treated at Mayo Jax. Was diagnosed with NETs (Carcinoid Syndrome)December 2022, started in the small intestines and metastasized to the liver. Currently being treated with Lanreotide injections. Where is the tumor.
I’m being treated at Mayo Jax. Was diagnosed with NETs (Carcinoid Syndrome)December 2022, started in the small intestines and metastasized to the liver. Currently being treated with Lanreotide injections. Where is the tumor.
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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)!
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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2 ReactionsI know this is late but Mayo Jacksonville does have PRRT. Several of my Support group members get it.
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.
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?
I was recently diagnosed with neuroendocrine tumor/cancer - in February 2023. I’m new to all of this and have no idea what to expect. I am not receiving treatment at this time. I’m feeling lost and confused.
Hello @ginnym3 and welcome to the NETs discussion on Mayo Clinic Connect. I can certainly understand you when you say, " I’m feeling lost and confused." As a 20-year survivor of NETs (I had my first surgery in 2003, then again in 2005, and my last surgery in 2016). I can easily remember the confusion that surrounded my diagnosis. In 2003, there was little in the way of support groups or good information regarding neuroendocrine tumors (NETs). I also felt lost and confused.
As you are just beginning your journey with NETs, I would encourage you to learn as much as you can about this rare form of cancer. If you google neuroendocrine tumors, you will find websites like Mayo Clinic, and The Carcinoid Cancer Foundation who will provide you with lots of good information. Knowledge is one of the keys to being proactive in your treatment.
I would also suggest that you find a NET specialist. Not all oncologists are trained in treating NETs. Mayo Clinic has some excellent NET specialists in all three of their locations (Rochester, MN, Jacksonville, FL and Phoenix, AZ). If you would like to get a consultation with Mayo here is a link with information about appointments, http://mayocl.in/1mtmR63
If for any reason you cannot get a consultation at Mayo, here is list, from the Carcinoid Cancer Foundation, of NET specialists worldwide.
--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/
If you are comfortable sharing more, I would be interested in knowing where your NETs are located, what symptoms led to the diagnosis and what treatment(s) have been suggested?
-
Like -
Helpful -
Hug
1 ReactionI’m being treated at Mayo Jax. Was diagnosed with NETs (Carcinoid Syndrome)December 2022, started in the small intestines and metastasized to the liver. Currently being treated with Lanreotide injections. Where is the tumor.
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Helpful -
Hug
1 ReactionHow are you doing now? I was recently diagnosed
I was recently diagnosed. I was told that my Duodenum and Pancreas Head has tumor and metastasized to the beginning lymph node