Member has chosen to not make this information public.

Posts (46)

Jan 20, 2019 · CARCINOID CA - NOW CALLED NET'S (Neuroendocrine Tumors)- in Neuroendocrine Tumors (NETs)

Teresa, I'm pretty sure all of the treatments are handled this way. Since I will have my second treatment on January 30, I will post to let you know if the second infusion was exactly the same as the first.

Jan 18, 2019 · CARCINOID CA - NOW CALLED NET'S (Neuroendocrine Tumors)- in Neuroendocrine Tumors (NETs)

Hello Gaylejean,

Rather than write what my PRRT treatment was like, I am sending you a link to an 11 minute video that describes exactly how my treatment day went. If you have further questions after you view the video, please write.


Jan 18, 2019 · CARCINOID CA - NOW CALLED NET'S (Neuroendocrine Tumors)- in Neuroendocrine Tumors (NETs)

Dear Carcinoid.

From reading the posts it seems that you have done all the things I would do in search for advice, new information and recommendations. Through testing and evaluations a NET specialist would be able to determine if your husband would be a candidate for PRRT. I was diagnosed in 12/08 with NET tumors that had metastasized to my liver. That was 10 years ago and I know that the tumors were there before my diagnosis. After 9+ years of monthly octreotide injections, I had my first PRRT infusion on 11/28/18 and my second one will take place on 1/30, less than 2 weeks from today. That being said, I also have other health issues: heart disease, diabetes, arthritis, g6pd deficiency and a few others. Actually, I'm managing the "other" health issues more so than the NETs. The moderator of our state's Neuroendocrine Cancer Awareness Network has been living with NETs for over 21 years now and if you met, talked or fellowshipped with him you would have no idea that he has been on such a long NET journey. I'm starting year 11 and hope that I see another 11 years. There is hope for us with more awareness, research and treatments available for us dealing with this rare disease.

Do your due diligence in pursuing a good NET specialist. We all are different in some ways and other health concerns can impact the treatments available for us.

Wishing you the best and hope that you locate a NET specialist that is sensitive, willing and able to treat your husband in accordance with his other health issues.


Jan 3, 2019 · Take a Moment to Embrace Gratitude This Season in Cancer Education Center

I was diagnosed with NET (neuroendocrine tumor with carcinoid syndrome ten years ago. Cancer has definitely impacted my quality of life in an unfavorable way: doctor appointments, tests, scans, hospitalizations, sickness, fatigue, excessive hyperpigmentation and sometimes pain. Through it all, though, I try to hold on and appreciate all the good that is in my life and I am happy to say that I'm grateful for:

Friends and Family – new friends that I have made, old friends that are supportive and understanding and family that I can count on.

Each and Every Day – it's been a 10 year journey but every day is precious to me. I may have a rough night but when the morning comes I wake up, get out of bed and can take care of my needs.

Medical Team – I'm grateful that I have doctors that really listen and address my needs when required. When the medical staff greets me and call me by name, I feel so special and that I matter.

Support Groups – Having a rare-disease cancer, little information was available ten years ago when I was diagnosed. I didn't know where to turn and felt so alone dealing with the cancer. Today, ten years later, there is much more awareness, conferences, support groups and online support. Thanks to Mayo Clinic Connect I met and befriended a NET patient that lives only a few miles from me…Hi Teresa.
It has meant to much to me that I can fellowship with a person that has the same rare cancer and who knows what I'm going through.

Health Insurance – I have insurance that pays all of my medical expenses, except for office visit copays. I have never been turned down for any service, nor have I had to fight for coverage. NET is a very expensive cancer to treat. In the ten years that I have lived with this cancer over $1.5M in claims have been submitted and paid. I am still in treatment and will continue to receive injections, infusions, more tests, scans, office visits or whatever I need for the duration of my life.

Faith and Blessings – I'm grateful for my faith in God. Even in my worst times, I know that He is in control and that He has me and His plans for me are good.


Nov 24, 2018 · Watchman Implant for A-Fib in Heart Rhythm Conditions


I was on Eliquis instead of Xeralto following the implant. The six months of Eliquis went by quickly without problems for me and I have been on the low dose aspirin since March of this year. For me, the implant was the right thing to do. Great hearing you are doing well and that you can maintain your very active life.


Nov 24, 2018 · Watchman Implant for A-Fib in Heart Rhythm Conditions

Martin, a TEE (Transesophageal Echocardiography) is a test that produces pictures of your heart. A small thin tube passes through your mouth and into your throat.

Nov 8, 2018 · Watchman Implant for A-Fib in Heart Rhythm Conditions

Hello 1943,

Thanks for updating and sharing this news. You are on your way to living with A-Fib without the problems associated with blood thinners. My follow-up treatment was a tad different from yours. I was only on Eliquis for 6 months after the implant and then I switched to the low-dose aspirin. I'm been on the aspirin since March 2018 and doing well. Please keep in touch and let us know how you are doing. I've been seeing more and more requests for information on the Watchman.


Nov 8, 2018 · Heart Rhythm Conditions – Welcome to the group in Heart Rhythm Conditions


It was a pleasure to share my experiences with A-Fib treatments with you. I'm also pleased to learn that you have your condition under control and the treatment you are receiving is working for you.