mrsdahrens
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I have poorly differentiated high grade neuroendocrine carcinoma. It started out in two lymph nodes in my armpit. I went through, chemo, radiation and then surgery to remove what was left of tumor. Was cancer free for five months. Just found out in feb that it is back in one lymph node below my kidney. My dr sent my tumor tissue to Foundation One for genetic testing. I have five genetic mutations. Two of the mutations have the same recommended chemo treatment. I started afinitor one month ago with minimal side effects so far. If the afinitor doesnt stop the spread of this nasty cancer, i am looking at clinical trials. Does anyone know of any relevant clinical trials for this type of cancer? I feel like i am the only person in the world battling my specific kind of cancer! Noone responds to posts i post on various cancer websites.... I am 47, i have a six year old son and i am terrified! Its so hard to believe that with only one lymph node, that my situation would be so grim (in the words of my doctor).
Carrie0March 2014 -
Greetings! I noticed you chose to follow me. I completed chemo back in January, so if you have any questions, let me know. If I have a similar experience, I'll be glad to share what I went through. I hope things are going well for your husband. Please note, I am occassionally comic relief around here, so if I get irreverent, that's why. Wishing all the best to you both. Please don't forget to take care of yourself.0November 2013
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Hello,
I am an oncology/end of life nurse that specializes in gyne cancers. Welcome to the "What Next" family. If you should have any questions or concerns that you feel I might be able to help you with, please do not hesitate to ask. There are many excellent people here always willing to help in any way with the latest information or experiences to share. You are among friends….there are no strangers here. I hope you find all the information and support you seek, Carm RN.0November 2013 -
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Celebration (Breakthrough): VERY VERY HAPPY NEWS FOR ALL CANCER PATIENTS.
CANCER HAS BEATEN.INDIA'S HISTORICAL LIVING LEGEND WHO SAVED TAMILNADU FROM famine on 2009, 2010, 2013 has OBTAINED CANCER MEDICINE DIRECTLY FROM LORD SHIVA SUPREME OF ALL GODS FOR HIS STRUGGLES0November 2013 -
Yay! Glad you joined. I hope you are able to get some additional support here. Have a great weekend. Would you have time to talk on Sunday?0November 2013
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Hello and welcome, we are glad you found us. Please feel free to join in the conversations. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, I encourage you to go to the questions page now by clicking on the questions tab at the top of the page and post what is the most pressing issue you have right now. This will introduce you to the community and get you started on the help you need right now.
https://www.whatnext.com/conditions/cancer/cancer-of-unknown-primary
There are also subtypes listed on this page to narrow down the type of cancer to match your dx.
Also, if you can take a few minutes and fill in some details of your journey so far, it will help others as they try to answer questions for you, it also helps others as they search through the data base to find someone like themselves. Confirming your email will allow you to receive updates and notices from the site when someone answers your questions or writes on your wall.
Thanks for being with us and let me know if I can help you find any information on the site. After you have an opportunity to look the site over and see what great things there are here, we encourage you to invite your friends, family or anyone you know that may be helped by the connections on WhatNext to join the site also. Just click this link to invite them to join. http://www.whatnext.com/recruit-a-friend
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GregP 3X Survivor
Team WhatNext Community Mgr.0November 2013 -
Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.
Wishing you the best.
David
Founder, WhatNexter0October 2013