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NEDDY O'NED

ooo's picture
ooo
Posts: 107
Joined: Mar 2012

Had my first PET-CT scan on Saturday and ran home to look at the cd. Everything looked good to me --> NED Do it Yourself. I was not as brave as Skiffin to announce it to the public, though. Just came back from the doctor office who confirmed my self-diagnosis --> Officially NED.

For the newbies: I was diagnosed in February 2012 with SCC of the tongue, stage I with perineural invasion. Had surgery, IMRT and brachytherapy. Ended treatment in June 2012. Doing really well right now, only a bit of Lhermitte's sign, a very slightly dry mouth and can't quite roll my R's. Can't complain, really. My treatment was pretty aggressive and I'm happy I didn't play too conservatively.

The weeks prior to getting scanned have been pretty humbling. A coin toss is a coin toss. Anyways, my good luck won't go to waste, I'm ready to give back to the world.

Much love to all of you, fellow fighters and caregivers.

Dre.

:)

CivilMatt's picture
CivilMatt
Posts: 2924
Joined: May 2012

Hi Dre,

Tell me, how do I read my scan? Glad to hear NED again and again. Roll your R’s for me it was getting my whistle back.

Keep healing!

Best,

Matt

ooo's picture
ooo
Posts: 107
Joined: Mar 2012

Thank you all for your messages! :)

This is what to do to self-read your scans:

1. Right before or after your scan, ask if you can have a cd with the images for your record. They'll ask you to wait 10 minutes while they write the cd.

2. Insert the cd in your computer and launch it. This time I got an error message and I had to download a .dll file from the Microsoft website. It was really easy, so don't get discouraged if you have to do it too. The cd of my very first scan, instead, started without any problems.

I guess what follows depends on the specific software they load on the cd. In my case:

3. I see a brief list of exams (e.g. CT only, combined PET-CT, ...) I click on the exam I want to look at.

4. The screen gets divided into four quadrants, one with a 3d rotating image of my body, and the others with sections along the three axes.

5. It took a few minutes of trial and error, but with the menu on the left I could explore different slices of the body, zoom in and out, change the brightness of the PET data superimposed to the CT data and so on.

6. Ideally only tumors would show up as bright spots and everything else would be dark. In realty there are bright structures with varying levels of brightness (your brains, believe it or not, is super-bright :P, your bladder, part of your kidneys, ...) Online you can find a lot of images of healthy patients and use those as a reference. Also, right after treatment some diffuse brightness in the areas that were treated has to be expected. In my very first scan I had a few spots on my shoulders.. they told me it's brown fat.. didn't see any of it in my last scan. The point I want to make is that there's a lot of anatomy knowledge (which I don't necessarily have) that goes into interpreting the images.

Which brings me to my disclaimer:

Your self-diagnosis must not replace the opinion of a qualified doctor. And for the faint of heart it might be better to wait for a few days without knowing anything, instead of playing radiologist.

Good luck to all of you!

Dre.

cureitall66's picture
cureitall66
Posts: 860
Joined: Aug 2012

Glad to hear your news. We are just starting tx. Going through some trials of radiation to the tongue right now...but counting down our days/weeks of treatment is getting us to hang on.
Better than the alternative.

Hope you continue to stay on the forum and share your inspiration to everyone.

Bless you and us all.

phrannie51's picture
phrannie51
Posts: 3685
Joined: Mar 2012

Congratulations on your Neddy O'Ned!! I've wondered where you'd been. This is great news, I'm so happy for you.

p

Skiffin16's picture
Skiffin16
Posts: 8071
Joined: Sep 2009

Glad you figured it out...., I kmow Matt can also, LOL...

Best,
John

meaganb's picture
meaganb
Posts: 226
Joined: May 2012

Reading these posts never gets old! So glad you are healing well and may you have many more NEDs in your future!

ditto1
Posts: 630
Joined: Mar 2012

Wow I did not know you could bring your CD home and do a self exam. But you hit it on the head NED and why not let the Docs confirm it, gives them something to do. So happy for you NED forever.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

That is amazing news! So happy for you, now go an celebrate!
Billie

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

So glad to hear you received the NED. That is wonderful news.

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Glad Club Ned is not nearly impossible to get into. Welcome. I'm sure the party is still going on at your place. Good

katenorwood
Posts: 1821
Joined: May 2012

Dre,
Hey there ! I'm getting so excited for all the NEDS on board. Congradulations, your post made me humbled. You fought hard and won, what an amazing feeling. Go get 'em Dre ! Katie

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

Can't get enough NED talk....All the best, now go enjoy the day!!!!

Laralyn's picture
Laralyn
Posts: 441
Joined: Apr 2012

It's so awesome to end my workday with news like this. It definitely puts a smile on my face for the ride home!

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Awww....thoese lovely three letters...the grass is greener and the sky more blue than ever now.. :)

Very happy for you ..

Best,

Tim

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

Best three letters in the alphabet
...........NED...........
I pray all your future scans are the same.

God bless
Tonsil dad,

Dan.

Hondo's picture
Hondo
Posts: 5738
Joined: Apr 2009

I agree you just got to love that word

Hondo

luv4lacrosse's picture
luv4lacrosse
Posts: 1387
Joined: Jul 2010

That's some good news my friend. I have my first scan w/ contrast tomorrow afternoon to see if the chemo trial I am on is beating back my recurrance.

Hope to read many more NED's today and tomorrow in anticipation of my scan.

Now go live a little and have a great rest of your weekend.

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