Checking in.....STILL here, question for NED'ers

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teachpdx
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Re: Checking in.....STILL here, question for NED'ers

Postby teachpdx » Sat Jan 09, 2016 12:04 am

Thanks for the thread Rob. Very interesting read. Sorry about all the problems people continue to have. Sorry about your stroke Bev. I have had issues since my treatment and am just beginning to see some hope. My ass hurt since my surgery and no one seemed to care. It was only around this past Thanksgiving that I realized I had been suffering from chronic pain. Did some pressure point on my anus and got some relief and was hoping that I had "fixed" the problem because the pain went away. Starting doing stuff again and ended up in pain again and dejected.

After pouring over multiple anatomy books figured out the problem was with my pelvic diaphragm (lowest muscles & tendons in ass) so I started just using my abs and gluts to protect my ass. Have had very little pain since then and am hoping to keep it up.

Didn't know about eye thing except that I REALLY need new glasses (none since diagnosis) and they tear like a son-of-a-bitch when I'm out in cold (<45 degrees) weather. I didn't have oxi so no neuropathy, but my HFS just went away this past June. I had an accident on my way to work the other and had to clean up in toilet because the adult bathroom had 3 stalls. Just some of the joys of the side effects.

I also feel isolated because I'm not back to "normal" but I know people don't really care and they just seem to assume if you "beat" cancer then you're good to go.

Peace to all of you and solidarity to the fight. Kristi
4/24/12 RC T3N1M0 age 53
5/23-7/2 - 26 chemorad - Xeloda
7/16 Lynch- MSH2
8/28 LAR w/ temp ileo, CR, 0/11,M0, hysterectomy
10/13 6 cycles Xeloda - completed only 1 1/2 due to HFS
3/12/13 - reversal
8/13 NED
6/15 - HFS gone!

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CRguy
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Re: Checking in.....STILL here, question for NED'ers

Postby CRguy » Sat Jan 09, 2016 2:19 am

Rob in PA wrote:So, getting back to the point I was about to make....Is there anyone else out there who is currently NED but going through a "mini-hell" daily due to effects from years of chemo/surgeries/etc? And, if so, do you find yourself in a "gray" area between treatment and total cure where it is difficult to explain to casual friends that, while I am NED, I have the cancer gift that keeps giving painful/uncomfortable reminders every day that render me unable to function normally?

Hope all the best for everyone this year.

Fightin the fight.
Rob


Backatcha' on the good wishes buddy
and ...
DEFINITELY keep fightin' the good fight !

To answer your actual "point" ....
I may be currently NED ... based only on the resolution of the latest scan and Onc's interpretation ...
I may be in kind of a hellish state off and on with GIT and neuropathy and other issues which I now accept as normal ...
I am in a gray area between last treatments, current issues and upcoming scans etc.
I do not give a shit about explaining to anybody ... anything about my past, present or future "condition" ... for any reason
SO I guess I kind of limit my external conversations ( EXCEPT here with ma' homies )
and focus on keeping things internal. Maybe not the best strategy, BUTT the one which has gotten me through 64 years of life.

...and such as life IS ... my biggest struggle I guess is just trying to accept it, myself.

You are NOT alone
none of us truly are alone unless we choose to be.

I just choose to share some things and not others and folks need to take what they get.

I am the one livin' the cancer dream and as my dear friend cptmac once said :
" I am the one with cancer, so I am always right !!!! "

SO you are NOT alone and whatever gets you through the day (night !) IS alright ...
IT'S ALL RIGHT :!:

Cheers and Harmony my friend
CRguy
Caregiver twice
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing NONrandomized UNcontrolled experiment with N=1 !
Review of my Journey so far
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MHL888
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Location: Twickenham (Greater London), UK

Re: Checking in.....STILL here, question for NED'ers

Postby MHL888 » Sat Jan 09, 2016 8:05 am

Hi All,

This booklet https://www.beatingbowelcancer.org/wp-content/uploads/2016/03/PsychologicalEffectsofCancer-MikeOsborn-booklet.pdf covers a lot of the points raised in this thread.

While it doesn't contain any earth-shattering 'silver bullet' type advice, I found it well written and useful without being patronising.

Cheers and peace,

Micah
Last edited by MHL888 on Thu Sep 08, 2016 6:02 pm, edited 1 time in total.
11/2014 diagnosed sigmoid adenocarcinoma (rT3N1Mx) @ 47 after 2 years of missed opportunity for earlier diagnosis :-(
Randomised to treatment branch of FOXTROT trial (split chemo regime, both pre & post op)
LAR 10/02/2015 - staging pT2N2Mx, 6/29 LN with LVI confirmed
CT scan 17/03/2015, looking good so far (everything crossed) Mx now M0 (for now). 13/04/2015 Chemo restarted, 9 rounds more . Bleachh.
03/09/2015 Last of 12 rounds of Folfox.

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Rob in PA
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Location: Pennsylvania

Re: Checking in.....STILL here, question for NED'ers

Postby Rob in PA » Sat Jan 09, 2016 1:57 pm

MHL888 wrote:Hi All,

This booklet https://www.beatingbowelcancer.org/sites/default/files/page_files/PsychologicalEffectsofCancer-MikeOsborn-booklet.pdf covers a lot of the points raised in this thread.

While it doesn't contain any earth-shattering 'silver bullet' type advice, I found it well written and useful without being patronising.

Cheers and peace,

Micah


I just read it Micah, thank you very much. It was very simply put and a good read for friends and family to try and understand some of the things we are dealing with.

Thanks again,

and Thanks CR for keepin it real as always. Yes, I worry too much what others think.

Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

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chrisca
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Location: Portland, Oregon

Re: Checking in.....STILL here, question for NED'ers

Postby chrisca » Sun Jan 10, 2016 1:15 am

I'm NED, and for me the anxiety of recurrence is a lot lower now that I'm at the 5-year point. But I do hear from people all the time that "you look great, nothing seems wrong to me." But the damage to bowel function from treatment is an ongoing issue only my close friends and relatives know about. I had to write a letter to get excused from jury duty, and had to give all the gory details to get them to believe I wasn't trying to get out of it for no reason. It has dawned on me that despite the problems of daily life, NED is a gift.

What I've decided to do with the gift of NED is to fight to improve the quality of life for survivors. I write letters to docs when I encounter a lack of empathy or interest in survivor quality of life issues. I do everything to educate the public and the medical establishment that cancer is a nasty disease, but being "cured" can still be hell. Survivors have a right to better care to get more of their lives back. I also do my best to educate people about the risks of false-negative diagnosis, making sure people get screened, and what those diagnosed need to do to be sure they get the best care. I'm also a personal guinea pig to try to reduce my own post-treatment difficulties. I've made some positive steps and hope to make more. Being patient is the hardest part.
Male, false negative colonoscopy age 48
DX: 12/2010 rectal cancer age 51
Stage T3N0M0 2 cm from anal verge
neoadjuvant rad/chemo Xeloda
Rectal resection (open surgery) straight anastomosis
Xeloda round 2
ileostomy reversal 11/2011
Successful adhesion X-lap 8/2013
Ongoing LAR syndrome but NED 5 years

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Rob in PA
Posts: 1965
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Checking in.....STILL here, question for NED'ers

Postby Rob in PA » Sun Jan 10, 2016 2:12 am

That's awesome chrisca! !!
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

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elise
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Location: Ontario (Canada)

Re: Checking in.....STILL here, question for NED'ers

Postby elise » Sun Jan 10, 2016 7:05 pm

I am 33 years old, and officially disabled according to the government of Canada. Stage 2 surgery+chemo, NED, stage 4 surgery+chemo, NED. I'm grateful for sure. I am alive and able to do lots of things I love butt for sure there are SO many side effects of chemo and surgery.

I am absolutely sick of hearing "when are you going back to work?"

You're not alone. You're not the only one who feels like this.

Chin up,
Elise
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

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PGLGreg
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Location: Waimanalo, HI

Re: Checking in.....STILL here, question for NED'ers

Postby PGLGreg » Sun Jan 10, 2016 7:40 pm

I'm 10 years NED and probably in as good a shape as I would have been without cancer. Maybe I can can thank the low dose of chemo my doctor prescribed -- just 10 injections of 5fu+leucovorin while I was getting radiation.
Greg
stage 2a rectal cancer 11/05 at age 63
LAR 12/05 with adjuvant radiation+5FU,leucovorin 1-2/06
NED for 11 years, cured

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DBF
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Re: Checking in.....STILL here, question for NED'ers

Postby DBF » Tue Jan 12, 2016 3:42 pm

One of my relatives recently said to me "Why are you still thinking about cancer??"

I'm 2 years NED. Physically I have a lot of joint pain and some neuropathy, but I'm dealing with that. And of course I worry about it coming back. I'm having a PET scan soon to see about an area of low attenuation in my liver. Is it cancer? So much limbo. My real issue is that while on folfox, I had a lot of "confusion" episodes that turned out to be focal seizures. I'm on anti-seizure meds now, but my EEGs show abnormalities, and my cognitive testing shows significant deficits in numerous areas (working memory, visual/spatial, concentration). The thing is, my career was in the development of academic tests. I went on disability when I realized I was making a lot of mistakes at my job- I couldn't get through some of the reading passages. I even have trouble following movies. I'm always scared that since I'm NED im going to lose my disability. If I lose my disability, I have no idea what job I can do. Sometimes I look at this as an opportunity to start a new career- something I can do- but then I think, really? At my age? And with a crappy brain? Of course I spend a lot of time thinking that I'm incredibly lucky to be NED. But I worry about so many things I wouldn't have worried about before cancer.
6/13 Dx @ 29 Wks pregnant, 42 yo
7/13 C-sec/col resec/part hyster.
8/13 Pulm embolism
8/13 Liv met
9/13 Liv resect
FOLFOX
2/14 part hyster.
10/15 obstruction surg
NED :D
ADAPT: Xel/Cel
Latest clear scan: 2/17
Mom to 3 boys: 18, 7, & 3

esk2poo
Posts: 499
Joined: Sat Dec 17, 2011 7:17 am
Location: New Jersey

Re: Checking in.....STILL here, question for NED'ers

Postby esk2poo » Tue Jan 12, 2016 4:09 pm

Hi Rob,
I do post much at all anymore but I read a couple of times a day. Not sure if that is good or not. I have been thinking about this post since you put it up here. I fought like hell when diagnosed and said throw the heaviest treatment at it. Now, a couple of years later, I wish I was one of the ones that didn't make it. I hate thinking that way when there are so many fighting so hard to see another day but I have been through a lot of shit in my time here on earth and I am already tired and ready to rest. Constant severe neuropathy, pain from neck to toes, cognitive issues, watery diahreea from 10-20 times a day no matter what I do. Best is it starts around 1-2 in the morning and I can't sleep after that. Lost my insurance last year because I lost my job and my original onc does not take my new one. Didn't like the one I saw and don't think I will be keeping February's appointment anyway. I should probably seek some type of professional help but I guess I just don't give a shit anymore. So glad you put this out here though as I am probably not the only one who feels this extreme either.
Good luck,
Allen
Dx 8/23/11 stage 3b crc
3 of 11 LN's
resection 9/15/11
folfox start 10/31/11 12 sessions
De-ported 6/2012
clear CT 7/2012
Clear colonoscopy 9/2012

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Rob in PA
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Re: Checking in.....STILL here, question for NED'ers

Postby Rob in PA » Tue Jan 12, 2016 10:50 pm

esk2poo wrote:Hi Rob,
I do post much at all anymore but I read a couple of times a day. Not sure if that is good or not. I have been thinking about this post since you put it up here. I fought like hell when diagnosed and said throw the heaviest treatment at it. Now, a couple of years later, I wish I was one of the ones that didn't make it. I hate thinking that way when there are so many fighting so hard to see another day but I have been through a lot of shit in my time here on earth and I am already tired and ready to rest. Constant severe neuropathy, pain from neck to toes, cognitive issues, watery diahreea from 10-20 times a day no matter what I do. Best is it starts around 1-2 in the morning and I can't sleep after that. Lost my insurance last year because I lost my job and my original onc does not take my new one. Didn't like the one I saw and don't think I will be keeping February's appointment anyway. I should probably seek some type of professional help but I guess I just don't give a shit anymore. So glad you put this out here though as I am probably not the only one who feels this extreme either.
Good luck,
Allen

Crap Allen. Sorry to hear this, butt you are not alone. I will not tell you to hang in there as that isxexactly what youve been doing.
It is hard. Very hard sometimes.
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

tif2112
Posts: 113
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Facebook Username: tif2112
Location: Henderson, NV

Re: Checking in.....STILL here, question for NED'ers

Postby tif2112 » Thu Jan 14, 2016 3:39 pm

I still have problems also. Constantly going between constipated and having accidents. I never know what kind of day/hour it is going to be. I take 3 stool softeners a day just so I can go at all and then it is usually 6 or 7 trips to the bathroom and at least once a week an accident or near accident. I still have sensitivity in my hands/feet to cold. And I can not eat as spicy of food as I use to. Lot of pain in lower back, which I think came from the radiation. I have a CT next month as we are now watching some lymph nodes that keep showing up on CT and lighting up on the couple PET scans I've done. I have been NED luckily since surgery but these pesky lymph nodes are now causing concern. I was lucky and had a minimum of chemo/radiation, but still left some issues. My dentist also said that he thinks the treatment caused some problems with my teeth, no idea on that one.
48 year old female
Henderson, Nv

T3N0M0
2012 DX - Rectosigmoid Mass, Colon Resection, rx - radiation and chemo
07-24-2014 NED
2014 englarge lymph nodes, biopsy of 1 negative
07-07-2015 even bigger enlarged lymph nodes, shown on MRI & CT
2015 biopsy of bone marrow, lymph nodes-negative
08-21-2015 Oncologist wants to wait and see, not sure if it is Lymphoma
06-30-2016 3 yr Colonoscopy
July 2016 CT Scan, August appt w/Dr.

PainInTheAss
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Joined: Tue Jul 02, 2013 3:08 am

Re: Checking in.....STILL here, question for NED'ers

Postby PainInTheAss » Fri Jan 15, 2016 5:48 am

When I was first diagnosed, I couldn't see very far into the future. All I cared about was having a future.

Now that my 2 year scans are clear, I'm starting to be able to "look" further and that vision is saddled with the realization that I will have to take along with me a lot of burdens cancer has given me. I didn't think about it before. It was just survive at any cost.

One of the biggest issues for me is vaginal stenosis. My tumor broke through my vaginal wall and the gyno Onc surgeon told me at one point that I wouldn't have a vagina at all. They managed to save it, but quite a lot of tissue was cut out in the process. My APR wound still has not healed all the way and it healed from the top down so the little part that's left is right next to the vaginal opening. The scar tissue has expanded, as one would expect, so my vagina is about the diameter of a finger. On top of that, even just putting a finger in there hurts like hell and burns, too. No one seemed to know where to fulfill my prescription for vaginal dialators so I never got any, but I doubt I would have been able to use them anyway because of the pain. Because the vaginal wall was cut, it's probably always going to hurt really bad with a lot of pressure put on it. I've come to realize that I may never be able to have sex again. How do you bring that up on a date? I had always hoped I would meet someone after my kids were grown, but what normal man would want a relationship with a woman with, in effect, no vagina? Or even gave sex with someone and cause them incredible pain? That's the part that really breaks my heart. I love my kids and hope to be there for more grandchildren, but it's hard enough to date without all this. A part of me has just accepted that I may have to live the rest of my life without romantic love. Another part of me thinks I might be a great partner for a paraplegic! Is there an "EDHarmony?" :D

I've been having dreams lately where I've met someone and felt very attracted to them and flirted or was in love only to wake up and realize that may never happen. It all feels so real in the dream. Not too long ago, I was dating Matt Damon! He's a great kisser, by the way. I am always a normal woman in my dreams.

I feel like a broken person. And less than a woman. Nevermind all the odor problems with my colostomy. I just don't see how any man would want me now... Not like this. And deep, deep down inside, that makes me really sad.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

hart2hart
Posts: 776
Joined: Wed Nov 23, 2011 10:46 pm

Re: Checking in.....STILL here, question for NED'ers

Postby hart2hart » Sat Jan 16, 2016 11:36 am

WE are VERY Grateful for Pete's NED status as well. However, he does have lingering problems everyday...
The worst being the neuropathy in his feet. So, life yes, grateful yes but still lots of problems.
He does however feel very lucky to be here and see our kids grow up!


Hugs for all,



Julie and Pete
Stamford, CT
Pete (hubby) Stage 3 VLRC - 11/11
Chemo/Rad/Ace Surgeon - 11/11 - 4/12
Oxi/Xeloda (Severe Toxicity to OXI) - 5/12 - 6/12
5Fu Only - 8/12 - 2/13
Liver Resection/Hai Pump/Folfiri/FUDR - 10/13 - 5/14
Lung Ablation (MSKCC) - 12/31/2014
Xeloda through 4/2015
NED - 1/2015 - 12/2016

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Rob in PA
Posts: 1965
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Checking in.....STILL here, question for NED'ers

Postby Rob in PA » Sun Jan 17, 2016 3:09 pm

PainInTheAss wrote:When I was first diagnosed, I couldn't see very far into the future. All I cared about was having a future.



I feel like a broken person. And less than a woman. Nevermind all the odor problems with my colostomy. I just don't see how any man would want me now... Not like this. And deep, deep down inside, that makes me really sad.



Pain in the Ass, so sorry that you also are experiencing problems post NED. As you described, there are many physical and emotional scars that come with cancer that never let go, even when in NED stage. And, lets not kid ourselves, NED is a phase of cancer and not a guarantee of being cured, so it is most definitely a welcome declaration by the docs....but super scary nonetheless.

PIA, I'm sorry I can't offer the same "i hear ya" that the women members of this forum can offer, but I certainly am sympathetic to what you are dealing with.

Good talk, let's keep it all real and help each other deal with our cancer no matter where we are in the game.

Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED


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