Have I got a story to tell.....

Great news and thanks for years of your wisdom and support. Bill

Praise God. You found a miracle! I'm so happy for you!

So happy to hear such great news!!!  We will be traveling the U.S. starting the first of the year in our motorhome.  I'll be on the lookout for all of you!! 

Phrannie truly chuffed for your miracle x

Phrannie, I gotta tell you that even though we don't "talk" and you don't know me at all, part of my coming around less was your disappearance.   I didn't want to know, you know?

But now that I know I feel stupid.  I will pray for the NED call and for this one to be permanent!

This is such great news Phrannie.  I haven’t been on the forum in a month or two, but I have followed your story, kept you in my thoughts and prayers, and I am so happy  hear you are looking at NED after such a harrowing battle.  Your story should give you and all of us hope—especially given the variety of treatments that are becoming ever more available and hold such great promise.  You are an inspiration, and certainly lighten the load I carry since being diagnosed and treated in 2016.  I will try to stay on here in a more dedicated manner as I get so much from those who arrived here before me and those just joining the battle.  

I know you really don't know me, but I used to read a lot of old posts when my husband was in the process of diagnosis a year ago.  I found your posts very informative and inspiring.  I'm so very happy to hear that you are doing well!  

The treatments for HNC and related complications are evolving so quickly right now.  This is why as long as you feel good and can tolerate the treatments, it is worth exploring your options when thing come up.  Thank you for always being a positive inspiration to patients and caregivers here.  

unknown said:

Hello All,

My name is Catt, I am new here. I was diagnosed with Non-Keratinizing Invasive Squamous Cell Carcinoma, Well-Differentiated (Nasopharengeal Cancer) on 11/20/17. That diagnoses took my breath away. It still does. To make a long story short...I went through 35 radiation treatments w/ 3 rounds of Cisplatin. I finished my treatments the first week of February 2018. With a few months of recovery. I healed quickly, thank God! My first PET scan came back clear and it wasn't until my second scan in August of 2018 something showed up to my disappointment. After a few months of hoping it was residual radiation...it wasn't. My doctor saw a nodule in my nasopharynx. This called for a biopsy, which lead to a tonsilectomy. My new diagnosis as of 2/15/19...Malignant Neoplasm of Posterior wall of nasopharynx Squamous cell carcinoma, NOS Primary. I'm completely and utterly overwhelmed again. My 33 Proton Therapy treatments starts on 2/26/19. No chemo during this treatment, they want to do that after I'm done and that could be indefinately.

My doctor told me this is the only cure for my cancer. WOW!! I'm so nervous, anxious, sick to my stomach...what to do???? I was hoping that if I joined a group that I would learn more about my cancer and have more hope about my recovery and survival. Could someone...anyone offer some advice, because I'm at a loss.

Thank you for reading,

Catt

Hi Catt, Sorry to hear what you are going through. I had my treatment for NPC done 7 years ago, so far I am in “complete” remission.

First of all, I strongly encourage you to post on a separate thread, you will definitely get (more) answers.

The proton therapy sounds like a good option, since the reoccurrence (tumor) is not too big (I guess) and confined to a delineated area. Proton is more targeted radiation and there are (allegedly) fewer side effects than IMRT type radiation (I suppose) you had.

Something I would encourage everyone with a reoccurrence or re-treatment to ask is for Immunotherapy. Why? There is so called abscopal effect of radiation therapy (ability of localized radiation to trigger systemic antitumor effects). This may take care of any “residual” microscopic or incipient tumors. The evident issue is that there is no way (imaging, or any marker) to demonstrate that immunotherapy works, since the proton therapy will definitely take care of the bulk, and (potentially) remaining stray cells cannot be assessed anyway. So ask, but don’t be surprised you will not get it. They may tell it’s reserved in case of (re-)re-occurrence or mets.