jan_h

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).

Carrie

My ENT surgeon at Jeff is Dr. Marc Rosen. He was able, due to a well forward location (about where my glasses sit on the bridge) to do my surgery intra-nasally. Standard of care was de-gloving of the face (what I call a Learning Channel episode), so I really appreciated his efforts! Oncologist is Dr. Takami Sato, a melanoma researcher, and a good doctor in that he works with me as a member of my care team; i hardly feel like the patient. I did NOT do my radiation therapy there, mainly due to the need for M-F for over 6 weeks, so I moved it to a hospital near me East of Trenton, Nj, and it never came back to the original site. I even used a surgeon at Jeff for my only metastasis 3 years ago (caught early small spot L Lung), and that was minimally invasive thoracic surgery (scope, 3 small holes, quick recovery). Just be a vocal, active self advocate and know your stuff; if so, you will be treated as an equal and be in control of your own treatment. I'd also endorse using the Jeff Center City Imaging unit at 850 Walnut; they even comp parking 100%!!! We joke about my 1/4ly visits earning frequent flier miles....The parking at 925 Chestnut can be valet, and if so, costs about the same as parking it yourself; so get your ticket validated before you leave the doctor's office each time (sure is nice in crappy weather or when feeling crappy!). So much more info to share, let me know if you need more direct contact with me.

Hi Jan, there are two ways to comment, you can go to each others page or comment under each comment by clicking on the comment tag under each post. I just tried to comment under your post on my wall and the system would not let me. We may have a little bug there. We just rolled out a new version of the softwre today.
I was going to tell you, I was diagnosed at age 28 with hodgkins, then a year later again, hodgkins, then was clean for 18 years, woke one morning to fing another lump behind an ear. This time Squamous Cell Carcinoma, malignant tonsil. Two surgeries and 25 radiation treatments later, and for years, here I am. Now just fight the side effects.
It's scary I know, but the great thing about this site is there are thousands here, that have been there already and pulled through to the other side. You can too!

One of the BEST things about your location is the proximity to many good cancer institutes in Philly, and NYC in a not-unreasonable drive. I alternate between Jeff U in Philly one 1/4 and my "2nd opinion" Chief of Melanoma @Sloan Kettering in Manhattan the next. Good luck, I hope it is early, small, and not the version I have!

Hello and welcome, we are glad you found us. 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, any questions you may have just post them in the questions tab and everyone will see them there and be able to help you.

https://www.whatnext.com/conditions/cancer/head-neck-throat-cancer

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

Greg P
3x survivor
Team WhatNext

Welcome. Thank you for registering. Here are a few tips to get you started:

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Best,
Team WhatNext