Hey--What's up with NED Posters?

Please feel free to read, share your thoughts, your stories and connect with others!
mm66ny
Posts: 427
Joined: Mon Jan 18, 2010 11:11 pm

Hey--What's up with NED Posters?

Postby mm66ny » Wed Jun 10, 2015 11:56 am

I've been NED for over 5 years, and I rarely post anymore. I rarely even visit this board.

But just because I'm NED and don't post anymore, doesn't mean I have completely moved on with my life. I imagine the converse is true as well: you can't conclude that continuing to post means one hasn't moved on with their life, either--whatever "moving on" means. As Gaelen once admonished me: "it's not like you were on vacation and now you're back."

And here's the good thing: I don't have to understand why someone continues to post after they are NED. For whatever reason, they find it helpful to them in some way, and if I can't understand what that is, that doesn't really matter. And it ain't my job to tell them to stop posting, even if in some circumstances it might be holding them back from moving forward (which, again, I can't assume). They'll get it when they get it.

I totally get what Karin was saying; I don't agree with her, but I've certainly thought the same thing sometimes. Why the fuck would anyone want to continue to hang around here if they don't have to. But if that bothers me, that's my problem, not theirs.

I visited the board this morning because, even though I've been NED for a long time, I've been wondering if I should just get a colostomy. I am sick of spending my life in the toilet (although I'll admit it's a way to get away from my kids for a few minutes); tired of having to wipe my butt a zillion times a day; waking up with smears; avoiding sex with my beautiful wife because of same--hard to feel in the mood when you're worried about poop creeping out; never being done pooping. Quality of Life.

Where else am I going to find people who can relate to my experiences?

Michael.
Dx RC, T3N1M0, Feb. 2009
LAR, Ileostomy June 2009
12 Folfox tx
Ileostomy takedown Jan. 2010
June 2014 five years NED
Age 48
married w/7 children
Generally irresponsible

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: Hey--What's up with NED Posters?

Postby KWT » Wed Jun 10, 2015 12:13 pm

Michael, see posts about daily enemas, and give your wife a little, and I don't mean an enema! :wink:

aja1121
Posts: 214
Joined: Sat Jun 28, 2014 5:12 pm

Re: Hey--What's up with NED Posters?

Postby aja1121 » Wed Jun 10, 2015 12:17 pm

I dunno Kenny, some people are into that kind of stuff :shock:
05/23/14 DH dx Stage 3B rectal ca (age 41)
6/2014 chemorad | 10/2014 LAR, all nodes clean
FOLFOX x 10 | VATS/lung met | ileo reversal
09/15 local recurrence
10/15 colostomy
11/15 FOLFIRI x 4, major growth
02/16 tumor debulked
Stable ten months on Xeloda/Avastin
Growth on clinical trials NCT02024607 (BBI608 + FOLFIRI), NCT02817633 (anti-PD-1 + anti-TIM-3), NCT03175224 (c-Met inhibitor)
09/27/2018 started hospice
02/07/19 died

mm66ny
Posts: 427
Joined: Mon Jan 18, 2010 11:11 pm

Re: Hey--What's up with NED Posters?

Postby mm66ny » Wed Jun 10, 2015 12:20 pm

Thanks, Kenny! I will.
Dx RC, T3N1M0, Feb. 2009
LAR, Ileostomy June 2009
12 Folfox tx
Ileostomy takedown Jan. 2010
June 2014 five years NED
Age 48
married w/7 children
Generally irresponsible

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: Hey--What's up with NED Posters?

Postby KWT » Wed Jun 10, 2015 12:40 pm

mm66ny wrote:Thanks, Kenny! I will.


I can assure you if done correctly your frequent bathroom visits will be a thing of the past.

If you're serious go to Amazon .com and pick up an enema rig. And don't cheap out buddy get the stainless steel bucket job! It's the Ferrari of enema delivery devices.

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Hey--What's up with NED Posters?

Postby justin case » Wed Jun 10, 2015 6:27 pm

mm66ny wrote:I've been NED for over 5 years, and I rarely post anymore. I rarely even visit this board.

But just because I'm NED and don't post anymore, doesn't mean I have completely moved on with my life. I imagine the converse is true as well: you can't conclude that continuing to post means one hasn't moved on with their life, either--whatever "moving on" means. As Gaelen once admonished me: "it's not like you were on vacation and now you're back."

And here's the good thing: I don't have to understand why someone continues to post after they are NED. For whatever reason, they find it helpful to them in some way, and if I can't understand what that is, that doesn't really matter. And it ain't my job to tell them to stop posting, even if in some circumstances it might be holding them back from moving forward (which, again, I can't assume). They'll get it when they get it.

I totally get what Karin was saying; I don't agree with her, but I've certainly thought the same thing sometimes. Why the fuck would anyone want to continue to hang around here if they don't have to. But if that bothers me, that's my problem, not theirs.

I visited the board this morning because, even though I've been NED for a long time, I've been wondering if I should just get a colostomy. I am sick of spending my life in the toilet (although I'll admit it's a way to get away from my kids for a few minutes); tired of having to wipe my butt a zillion times a day; waking up with smears; avoiding sex with my beautiful wife because of same--hard to feel in the mood when you're worried about poop creeping out; never being done pooping. Quality of Life.

Where else am I going to find people who can relate to my experiences?

Michael.

As to the first part of your question, perhaps I would not have been NED without the advise of this forum. I went through some different protocols, had 2 tumors at once, and have some advice I could give to others.
By my own calculations, because of the advice and research I did here, I received $600,000.00 worth of treatment, with a minimum of adverse effects, for around $35,000.00 :roll: My credit was never downgraded, I didn't lose my job, although this journey has been the most suck- ass of my life thus far.
If I can give help to anyone, for anything, regarding treatment information, I have a PM.
I make it a point to look for people overwhelmed by a prognosis of cancer at early stages, and try to be of help where I can, to ease their transition into their new life. Perhaps I should leave, and let everyone think that chemo is waiting to die in a hospital bed, without ever seeing the sun again. Who knew, there were pumps and other things you could do, to make every day life manageable. I didn't know you could take chemo pills. I didn't take chemo pills, but if I did, who knew, the manufacturer gave a discount. There are many reasons I don't leave this board; first and foremost, I haven't been asked to 8) 8) 8)
The other ,
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

Ron50
Posts: 699
Joined: Fri Feb 10, 2006 7:04 pm

Re: Hey--What's up with NED Posters?

Postby Ron50 » Wed Jun 10, 2015 7:46 pm

I am halfway thru my seventeenth year of survival. Cancer sufferers come to these boards to see what will happen to them , how they will deal with cancer, can they survive and will life return to normal after cancer. I can run thru my history. Dxed in early jan 1998 via a colonoscopy. My gi could not get passed the cancer. I was operated on the next evening. The result. My surgeon did not know if he had gotten it all. He described it as frightfully aggressive . It had raced through 6 of 13 nodes in a small field of around 13 inches of colon and flange. He said it was very difficult to pick up once it was into the fatty tissue. My oncologist agreed. Neither thought I would survive. I had 48 sessions of weekly chemo. 5fu via canula and enhanced by 9 tablets of levamisole every second week. Levamisole was banned in the US for human use in 2001. Post cancer I suffered constant duodenal and peptic ulcer attacks for a couple of years. Eventually I was admitted to emergency with acute pancreatitis. It was suspected a small gallstone had blocked my pancreatic duct. My gall bladder was removed. For years I suffered bile salt malabsorption and had to take cholestramine to stop the constant diarreah . I was put in for an endoscopy for upper gi pain. The initial dx at 90 % certainty was stomach cancer. Biopsies changed that to acute ulceration. I have been on 40mg daily of somac for years. I started to lose touch with my feet. I had no platinum based chemo. A neurologist dxed me with severe motor sensori peripheral neuropathy of both legs and and left hand . No cause was found and no treatment was offered. My feet and legs started to swell. It was dxed as peripheral oedema . It started to effect my lungs as well. I was suspected to have congestive heart failure. I had a stress test. No sign of heart failure. They checked my urine and found I was losing up to three grams of protein a day. 150 mg a day is the max permissible loss. I was sent to a nephrologist who did a kidney biopsy. He misdiagnosed my condition as minimal change disease and treated me with 75mg daily of prednisone for 18months. It did not help and I finished up in type two diabetes treated with metformin. I started to have joint pain . It was dxed as psoriatic arthritis. My rheumatologist and new nephrologist got togeather and started me on methotrexate for the arthritis and nephrotic syndrome. I had two more kidney biopsies . They show problems but none that relate to known kidney disease. I officially have an auto-immune disease of unknown cause and type causing nephrotic syndrome. The methotrexate was working but it was causing massive flares in my neuropathy. I had to go off it. After six months and an attack of parinfluenza my protein loss went beyond seven grams a day. I was suffering severe pulmonary oedema and a sleep test showed that in rem sleep my O2 was just under 80% . I was put on cpap. Due to the danger of blood clots my nephrologist put me onto 150 mg daily of cyclosporine. I suffer severe lower back pain and an mri showed disc degeneration and pars fractures. My nephrologist has vetoed surgical intervention and I get by on targin 40/20 night and morning , that's 40 mg oxycodone and 20 mg naloxone. I have to take two biscodyl and two coloxyl with each targin dose as well as a sachet of movicol every morning for opiate induced constipation. I had heart tests last year . The cardiogram showed ectopic heartbeats. They put a holter monitor on me . In 24hrs I recorded 10299 premature atrial and ventricular ectopic heart beats as well as several runs of tachycardia. I have been suffering unexplained severe sweats. My testosterone was tested twice . It should read between 8 and 18 in the morning . My tests were 7 and 5.2 so it appears that my auto immune and endocrine systems are shot. I have started testosterone replacement shots to try to give me some energy. I have had ten colonoscopies and as many endoscopies , my wife asked me to leave because I was always sick. I have burned up over $100.000 on specialists and treatments for no gain. In summary , no I no longer have active cancer but don't try and tell me I am no longer suffering from cancer. I hope that none of you who get that welcome ned status ever has to go thru the years of crap that I have. I wish you well but please be aware that though you may be assured there are no long term side effects from cancer and treatment for some of us they have become a whole new way of life. Ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

bitchslapped
Posts: 1534
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Hey--What's up with NED Posters?

Postby bitchslapped » Wed Jun 10, 2015 7:52 pm

Not once have I questioned in my mind why NED's or former caregivers remain involved w/the forum. In fact, I admire & respect the strength of character it takes to continue giving back & paying it forward BECAUSE they don't have to. I would not be so pompous to assume anything about one's life who chooses to remain a poster, or that one's life is more fulfilling because they have left the leper colony behind.

I'm all for being frank, so ya, give it your best shot, get it out there if that's what turns your crank, people. But we take what we get by doing so. If I'm swimming in waters full of sharks I want to know it. And if someone is offering their helping hand on how to avoid or get me out of said waters, I'm sure as hell not going to ask them: "Why are you still here, don't you have a life?"

Not all individuals suck the life out of something just when they need it & toss it aside, "So long, Sucka." We do live in a disposable society more so than ever and I guess we're all disposable. How about that?

I'm becoming increasingly disgusted from what I'm reading here on this forum...nothing to do w/this thread. Ya, there may appear to be some whiners & snivelers w/what may seem to be not-so-important issues. Additionally, there is a thread dedicated strictly to the Stage IV patient. Maybe that's a good place for some to start.

I'm a few weeks beyond the recommended 3 month grieving allowance I saw posted in another thread & then time to get on with it. It's possible I need advice on what may be an acceptable grace period should I choose to remain on this forum.

No response necessary. Just being a smarty pants. Believe me, I'm holding back. And that's OK too. I can do that. No one needs to know what I'm really thinking.
Bitchslapped
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

disco nap
Posts: 991
Joined: Sat Aug 07, 2010 10:45 am

Re: Hey--What's up with NED Posters?

Postby disco nap » Wed Jun 10, 2015 8:34 pm

Every member here, NED or not, has a role. Some of us need things from this forum. Some of us give things to this forum.

When I was diagnosed and in treatment, I needed things from this forum. I remember searching for people with similar staging as me and desperately looking for long term survivors and people who were "cured" in order to give myself hope. It helped a lot to see long term NED stage IIIs because i had evidence that survival was possible.

Now that I'm NED, I try to give back. And, I now look for people with the same staging as me who are beginning their journey and I am hopeful that I can be the sign of hope to them that others once were for me.


It's important to have positive stories and NED posters here to ensure a balanced view between the good and the bad, and the hope and the despair, of this disease.
DX July 2 '10 CC Stage IIIC, 11/18 nodes+
Right Hemi July 6 '10
Folfox: Aug 17'10 - Feb 17'11
Mar 2012: Lynch Syndrome MLH1
"Declared well" and been well ever since.
Update: Oct 2019 - still NED.

User avatar
jgall
Posts: 814
Joined: Wed Jan 05, 2011 9:44 pm
Location: New York City

Re: Hey--What's up with NED Posters?

Postby jgall » Wed Jun 10, 2015 8:35 pm

All I have to say is that it is nice to see you post here and I'm happy you are generally ok. As one who really enjoyed your previous postings when you were an active member, it was like seeing an old friend when I logged on tonight. :D

I've actually been giving this subject a bit of thought lately because I don't know how much longer I will be a caregiver and have to move to the world of "loved-one-left-behind." So I've been pondering if I'll continue to come anymore. I'm not all that active anymore anyway. Nearly everyone I made friends with so many years ago is gone (either passed away or not active) and there's so many new ones it's hard to really connect with them I guess because I'm in such a different place now than I was back when it all started for us.

Maybe I should take a lesson here from some of the others and be here to help others, but right now life is just so damned hard I can only focus on helping my sweet husband through this nightmare.

So thank you for popping in, it warmed my heart. I used to read your wife's blog all the time and had given it to several of my friends who have children like your sweet Finn, but I moved to NYC in 2013 and got a new computer and consequently lost her blog address. If you would, please PM it to me if she's still an active blogger. I always loved her writing.

Oh...and as a wife who actually misses that intimacy now...go do what Kenny says! :)

peace, old friend!
Julia
DH Chris, 50, Dx Nov '10 Stg 4
cardiac arrest from 5-FU
Iri/Erbi, RFA, liver/colon resection, more Iri/Erbi
Oct14-Feb15 clinical trial
SIRT Apr15-unsuccessful
Stopped treatment May15
Hospice July15
Passed 8/15/15
http://www.caringbridge.org/visit/chrisandjulia

User avatar
horizon
Posts: 1608
Joined: Tue Apr 12, 2011 10:10 pm

Re: Hey--What's up with NED Posters?

Postby horizon » Wed Jun 10, 2015 9:49 pm

disco nap wrote:Every member here, NED or not, has a role. Some of us need things from this forum. Some of us give things to this forum.

When I was diagnosed and in treatment, I needed things from this forum. I remember searching for people with similar staging as me and desperately looking for long term survivors and people who were "cured" in order to give myself hope. It helped a lot to see long term NED stage IIIs because i had evidence that survival was possible.

Now that I'm NED, I try to give back. And, I now look for people with the same staging as me who are beginning their journey and I am hopeful that I can be the sign of hope to them that others once were for me.


It's important to have positive stories and NED posters here to ensure a balanced view between the good and the bad, and the hope and the despair, of this disease.


It's as if you read my mind and pulled out the words I would have said. :)
I'm just a dude who still can't believe he had a resection and went through chemo (currently 9 years NED). Is this real life?

jillbugs4110
Posts: 266
Joined: Thu Jul 31, 2014 3:36 pm

Re: Hey--What's up with NED Posters?

Postby jillbugs4110 » Wed Jun 10, 2015 10:00 pm

Hi

Thank God for NED posters that are selfless enough to know that there experience may save another's life.
Live One Day At A Time
I Abandon myself to God
46 6 yo.....9yo...
stage 1V liver mets :-(
my one prayer to got to sustain me to raise my two babies this is my only wish then take me out if needed.

mm66ny
Posts: 427
Joined: Mon Jan 18, 2010 11:11 pm

Re: Hey--What's up with NED Posters?

Postby mm66ny » Wed Jun 10, 2015 10:31 pm

bitchslapped wrote:
No response necessary. Just being a smarty pants. Believe me, I'm holding back. And that's OK too. I can do that. No one needs to know what I'm really thinking.
Bitchslapped


I'm not necessarily singling out your response to my original post, but there were a few like it.

I was not actually asking why people still hang around, nor was I condemning those who do. It was really a response to Karin's post in another thread that people should move on once they're "better." As I stated, I understood her point, but disagree with it.

I realize the subject line made it seem otherwise. It was just a headline grabber.

Michael.
Dx RC, T3N1M0, Feb. 2009
LAR, Ileostomy June 2009
12 Folfox tx
Ileostomy takedown Jan. 2010
June 2014 five years NED
Age 48
married w/7 children
Generally irresponsible

Deborah Ann
Posts: 30
Joined: Mon Dec 01, 2014 2:13 pm

Re: Hey--What's up with NED Posters?

Postby Deborah Ann » Wed Jun 10, 2015 11:44 pm

Another NED poster...lots of reasons to be around...first one never knows when one goes from NED to full blown cancer again. I'm sure most of us were not told that there was a 100 percent certainty that the cancer was gone for good. This forum has great information just in case that big "C" ever decides to come back. Also, once one has been on awhile you get involved in other peoples stories...
and just because you are NED for colon cancer that does not mean you are out of the woods for getting another type of cancer...My Mom had breast cancer..she is 80 now a 20 year survivor...but I had a breast cancer scare just before I got diagnosed with colon cancer instead...
And..I just like hanging around with a bunch of great people!

User avatar
nitebreez
Posts: 79
Joined: Sun Mar 24, 2013 3:37 pm
Location: West Central Florida
Contact:

Re: Hey--What's up with NED Posters?

Postby nitebreez » Thu Jun 11, 2015 4:17 am

Deborah Ann wrote:Another NED poster...lots of reasons to be around...first one never knows when one goes from NED to full blown cancer again. I'm sure most of us were not told that there was a 100 percent certainty that the cancer was gone for good. This forum has great information just in case that big "C" ever decides to come back. Also, once one has been on awhile you get involved in other peoples stories..............................
And..I just like hanging around with a bunch of great people!


This!!!!^^

I actually never did know (and STILL don't know) my stage. That's because I was rushed into ER for emergency surgery for a perforated colon (that was thought to be the result of diverticulitus). So no nodes were removed or examined. When the lab results showed the "Big C",....all that they could do was to put me into what they called the "High Risk" category. So that is where I am still,....even though at this present moment I am NED.

So yeah,...I am still scared,..and thinking that the next shoe may drop at any moment. That's why I come here almost every day to carefully read the posts. I don't do a lot of posting myself,..but all the wonderful folks here have helped me in so many ways (that they have no idea just how much).
T4a-Nx-M0 cc (perforated colon) Septic shock
2/19/13 emergency surgery/colostomy
4/13/13 colostomy reversed (reconnected!)
1/22/14 folfox completed
3/3/14 CT Scan NED
4/15/16 CEAs still low


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 8 guests