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Roll call

CRashster's picture
CRashster
Posts: 230
Joined: Mar 2017

since the crash, things are real confusing. If you’re still here, type here or something.

Bart1978
Posts: 26
Joined: Aug 2018

present

donna_lee's picture
donna_lee
Posts: 901
Joined: Feb 2009

If you have told the computer to remember you with the password, it will for that calendar week.  And on Monday, it starts over.  But it shouldn't make you re-do your bio page.  Contact CSN if you are still having problems.

donna_lee.  And yes, I lost my pix, but need to put up a new one anyway.

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

Shucks, I missed out on all the excitement associated with the crash. 

I'm 2 years and 4 months post-neph. Still getting visits from Uncle Ned. I've graduated to once a year scans. 

I'm working on downsizing, might do some traveling. You know the t-shirt Fox (RIP) wore in his photo? It's from Motorcycle Week in Laconia, New Hampshire. There's a hill west of Laconia, with beautiful views of Lake Winnipesauke and the main road to Laconia. I've been doing some traveling in my quiet times, meditating on that view (my stepfather is buried near there, so I know the area a bit). It's quite lovely and peaceful. 

Deanie0916
Posts: 259
Joined: Nov 2016

Present, thankful to be so.

randyradiohill's picture
randyradiohill
Posts: 66
Joined: Aug 2017

I'm still here...got my 6 month scan next week.  Scanxiety is kicking in again.  Here's hoping for NED!

Hoss79's picture
Hoss79
Posts: 78
Joined: Nov 2017

I’m here. Just moved up my annual scan by 3 months because of some pains. Scanxiety just kicked in!!

LanceHeal's picture
LanceHeal
Posts: 57
Joined: Mar 2019

Newbie but here

penitent
Posts: 79
Joined: Jun 2016

My SIL John was dx'ed three years ago with Stage IV, grade 4, 60% sarcomatoid RCC (which is really not good) but has now been NED for a full year after immunotheraphy.  That's the great news...the not-so great news is that the intense SBRT radiation of a tumor near his trachea about 18 months ago apparently did major tissue damage to the trachea tissue and he has almost no air transfer without having to be temporarily dilated (twice now) by balloon during bronchoscopies.  The docs are scratching their collective heads as to how to deal with this...resection, transplant, or what.  They've never seen this kind of situation before.

So, a case of no evidence of cancer for a full year after end of treatment (yea!!!), but how do we deal with the radiation 'side effect'.  One thing at a time I guess.

 

Penitent

Jan4you's picture
Jan4you
Posts: 1322
Joined: Oct 2013

Still here after 5+ yearsand 5 years now NED!!

Sending healing hugs to all!

Jan

 

Blessedx10
Posts: 5
Joined: Mar 2018

Still here!!!

Angiebby75's picture
Angiebby75
Posts: 192
Joined: Aug 2017

I’m still here. I don’t post as much. My kids are involved in so many things it helps keeping busy.  Coming up on my annual scans in June. Surgery was Oct 2017.  Alot of scaniety. Still really not liking the annual scans than every siix months. Causing pain all over. Glad to here many are doing well and NED helps. Glidergsl congrats on being pregnant. What a wonderful time. 

saintmont
Posts: 63
Joined: Feb 2013

Hi Everyone, I am 12 months NED and 7 1/2 years in my journey. Having 85th infusion on thursday (opdivo) now only once a month.

Just getting cold in Tasmania heading to winter.

Cheers everyone saintmont

Cybball
Posts: 111
Joined: Nov 2017

I'm still here.   Check in now and then to keep sane and informed.   :)

kiwi68's picture
kiwi68
Posts: 110
Joined: Oct 2017

2 years post surgery for what was a benign tumour. After the innitial post surgery recovery I realised at the 12 month mark that I had forgotten it even happened.   Good to see some old names and faces still posting and supporting those who are new to the board and the diagnosis. Thans for you all that you do. 

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

I've been AWOL for a while for no particular reason.

I'm NED as far as I know (2.5 years after neph). I had an ultrasound a couple of months ago and they didn't call me in to talk about it. I'm assuming that is good news.

All the best to all of you, old and new. Now I have some reading to do...

Steve.

CRashster's picture
CRashster
Posts: 230
Joined: Mar 2017

it has been a while...

stub1969's picture
stub1969
Posts: 800
Joined: Jul 2016

Welcome back, Steve.  I hope all is well with you.

Stub

Steve.Adam's picture
Steve.Adam
Posts: 460
Joined: Oct 2016

Yes, all is well. Ned and happy. :-)

Deanie0916
Posts: 259
Joined: Nov 2016

Going in for CT scan next week. I don't check in as much as I like but appreciate all the love and support.

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