what is purpose of this forum?

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Rob in PA
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what is purpose of this forum?

Postby Rob in PA » Sun Jan 10, 2016 1:44 am

"The recent thread about Stage 4 Neds is an example. I wish I had not read it. I am hoping (or was) to get there myself. I am probably wrong about this, support is for all, just thinking. Should we be try to be sure that our comments encourage rather than discourage?" -- jalusa

Ok, I am sorry jalusa butt I'm still burning about your comment. I've been a participant of this forum for eight years and if the purpose of this forum is to "encourage " through false hope about what a person could encounter after treatment...then I'm out. Dont get me wrong, NED is AWESOME! ....butt, not without it's own debilitating effects as pre-cancer, and cancer have presented.

I came to this forum for help when newly diagnosed, then, I came to this forum as a "veteran" of cancer treatments offering insight, and now I come to this forum as a THIRD time (that's right, 2 times I've had my hopes up and dashed by cancer recurrence) NED "recipient" and I'm scared as SHIT that it will come back. I am looking for help just as you,only,from a different perspective...that of someone seeking guidance from others who are Ned..

I will not blow sunshine up someones ass. Life after cancer treatment is tough..for some (me included) . If I cant talk about my firsthand experiences regarding being Ned,then recurrence,then Ned, then recurrence, then Ned, ...well then I bid you all a fond adieu.

And jalusa, I love ya and wish the best for you.
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
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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Re: what is purpose of this forum?

Postby vilca11 » Sun Jan 10, 2016 4:08 am

Dear Rob,
The NED thread is a VERY good one... This forum main purpose is SUPPORT, SHARING and EDUCATION... Everything that falls in these categories is very good for all of us, cancer patients. It is a personal preference of the person to read, not read, regret or be grateful, like or dislike, etc the subject and posts.

We all are different personalities, the only thing we have in common is our disease until we form a close cyber relationships with a few, who share our stands, views, energy, chemistry. There are authors here that irritate heck out of me - I just do not read their posts. The same is true for my postings - there are plenty of people here who for sure have resentment to anything I say... But I also have people here who have become my cyber friends, and I consider myself lucky to know them...

So, do not take jalusa's comments personally - it is in her right to express what she feels, and she did it somewhat gently, while I knew that it would be upsetting for NEDers to read it - it was upsetting, therefore, to me too while I am not NED... Technically, NED is no more than a current status... It does not hold a promise - same as a treatment time, it just gives you Hope... Everyone handles their current status in life differently - some screw up what others view as a happy life, some in the worse situations consider themselves lucky and happy... All depends on one's Perception and Interpretation of the Environment, your own Self, Life purpose, etc...

Just my two cents, sweetheart, but I really do not want you to feel bad about the whole thing... I am so glad, that you and others could share their sufferings with us all - everything shared even on the internet that meets understanding on the other side is very gratifying, it helps people to know that they are understood, that they are not alone, that there are others who feel and know their pain. We are humans, mammals- look at the great teacher Nature... Have you seen mammals, and even not mammals, who do not "live" together, who do not need a partner, who do not need friends? I was watching recently on PBS a documentary, fantastic one, about friendships between different types of animals... Gosh, it was something... almost unbelievable... One that touched me the most, was a goat who took care of a blind horse... to the grave... then she died near horses grave too, she was old... The goat - an animal that everyone considers stupid, brainless, stubborn, etc!!!!!... what strength of emotional attachment a human has to have to do what she was doing for the horse for many many years? And some think that animals do not have emotions...

Hugs, Stella
11/2005 CC stage 1, F,50yo@dx
Mod dif adenocar, MSS, APC, TP53, CEAs1.6-4.8
1/12 1met liver@Vena Cava, RFA, 3oxi,11 5FU
8/13 2 mets same place,SBRT
4/14 2 Xeliri+Avastin
5/14 Nano Knife liver same 2 mets
6/14 2 Xeliri, ADAPT
4/15 PET, 2 same mets,Cryo Liver
5/15 MJ Oil, Herbs, Suppl, ADAPT
10/15 PET, same area, doubled in size, high SUV
10/15 RH, HAI, visceral involv., no LN
2/16 red FF, 50% red dose FUDR, CEA trends up
3/16 CT, PET, MRI L.Lobe all in small tumors
4/16 No acceptable options, going home

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Re: what is purpose of this forum?

Postby ANDRETEXAS » Sun Jan 10, 2016 4:12 am

I did not read the thread about Stage 4 NEDS, however I will say that it is possible to be encouraging, truthful and realistic simultaneously. Yes, I don't want someone to tell me a lie to raise my hopes, but I believe there are times when encouragement is helpful even when the odds are not so optimistic for staying in NEDville. If someone is given a diagnosis at any point with "no hope" of recovery or becoming NED, I would hope that would be the work of the doctors, and not anyone on this forum. Each case is unique, and it is difficult for forum members to give other forum members exact descriptions of what to expect as everyone is different. We can certainly give them information about what we experienced as they may have similar side effects, etc. And certainly you can and should tell us your experiences of going to and from NEDville. While your situation may not be like mine, I certainly want to learn all I can for my own future knowledge and possible use. Generally, I would say that I give hope and encouragement when it's called for, especially when I think I have realistic information that could help someone. If it's something I know little about, I usually don't post on a thread as I would not want anyone to think I know what I'm talking about when I don't. There's a place on the forum for almost anyone, but it's important that truth and realism are basics for an honest discussion, and encouragement to anyone in any stage is helpful as long as it's directed in a fair and truthful manner. Andre
2/10/14 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT

3/2/15 - Clean colonoscopy & port removed
3/4 - clean CT
9/21- clean CT

3/23/16 - clean CT

2/22/17- clean CT

3/21/18 - clean CT
4/1 - clean colonoscopy

3/11/19 - clean CT
9/23 - Five-year release - Annual visits now !

4/13/23 - clean colonoscopy


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Re: what is purpose of this forum?

Postby jalusa » Sun Jan 10, 2016 10:26 am

Rob, please don't quit on my account. The fact that you are here does give me hope.

Your post is probably fine. I do believe there is a line somewhere and I think I have seen it crossed. The idea that we all agree there are things not to say to a Cancer patient supports this.

Please note that I prefaced my post with "I am probably wrong about this"
Last edited by jalusa on Sun Jan 10, 2016 10:37 am, edited 2 times in total.
Hoping to get to resection with HAI pump.
Failed PVE - Searching for options
Chemo for life

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Re: what is purpose of this forum?

Postby Kick'nAssCancer'sAss » Sun Jan 10, 2016 10:30 am

If I wanted sugar coating I would head down the cereal isle. This is where we come to get the straight goods.
53M Dx RC Halloween 2013
CT & BONE scan
MRI/T3N0M0 1 suspicious LN
5 wks chemo/rad
LAR open TME Feb 26/14
temp bag
0/24 nodes pCR/pathological
Folfox (8) Mar 28-Jul 4 /14
Aug/14 clear CT scan
Aug 27/14 reversal
Feb/15 clear scope
July/15 Feb/16 Feb/17 Feb/18 clear CT scans
Feb/18 clear scope
Sept 19 clear CT scan & DISCHARGED :P
Mar/23 clear scope
CEA 1.6 @ dx
1.6,1.4,1.7,2.4,2.9, 2.7 2.3 2.5 2.2 2.1 2.5 2.6 2.7
2.7 Sept 19
0-4 normal

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Rob in PA
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Location: Pennsylvania

Re: what is purpose of this forum?

Postby Rob in PA » Sun Jan 10, 2016 11:35 am

muskokamike wrote:If I wanted sugar coating I would head down the cereal isle. This is where we come to get the straight goods.

Exactly my point. Thanks.

No hard feelings Jalusa, just don't agree that we should keep the dark side of what is for the most part, a terrific thing (NED).
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
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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Location: Charleston, TN

Re: what is purpose of this forum?

Postby sadysue » Sun Jan 10, 2016 12:39 pm

Totally agree with you, Rob. If I wanted to read about unicorns, I would pick up a book of fairytales. Our disease is a nightmare - nothing warm or fuzzy about it.
Rectal dx 4/2011 (Stage 3B - T3N1M0)
5FU/Rad - daily/6 wks ending 6/2011
Surgery 8/19/2011
Finished 8 rounds Folfox 2/2012
Ileo reverse and port out 3/2012

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Re: what is purpose of this forum?

Postby chrissyrice » Sun Jan 10, 2016 1:13 pm

I agree with all of the above.
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months

Posts: 2298
Joined: Fri Feb 06, 2009 10:07 am

Re: what is purpose of this forum?

Postby ams5796 » Sun Jan 10, 2016 1:54 pm

I agree with all of the above too. I also agree with jalusa that hearing a couple of people on that thread saying that sometimes they wish they hadn't survived is very discouraging. Most of us on this board are fighting very hard to be here.The last thing anyone wants to hear is that it wasn't worth it. My quality of life is not great by any means, but I still would rather be here than not.

Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: what is purpose of this forum?

Postby peanut_8 » Sun Jan 10, 2016 2:13 pm

Just my opinion, butt is someone is offended or upset by less optimistic posts, then they should probably find another outlet for their time. Life is not like a Disney movie.
Best Wishes, peanut
female, diagnosed Jan 14, RC stage 2a, age 56
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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Location: NZ

Re: what is purpose of this forum?

Postby NZJay » Sun Jan 10, 2016 2:30 pm

I haven't recently read the thread referenced above.

But every time I log on here, I know I can read of dreams, nightmares and (for lack of a better word) miracles. I know my emotions could be tugged in any direction by what I read.

But everything I read is REAL, from real people, who experience the same things as myself. And that's something I cannot find anywhere else. So I accept the ups and downs, as we all must do.
11-13 Dx CC
SPS T4b(touched stomach organ),N1(3/23),M0(Stage 3B)
11-13: resect + partial gastrect
2-14: 1 Tx Cape + Oxy; renal failure, colitis
4-14: 7 Tx Capecitabine
1-15: clear CT
7-15: clear scope
1-16: clear CT
3-17: clear CT
10-17: clear scope (5 year gap now!)
CEA@dx: 8.4 / 6-15: 4.0 / 10-15: 4.2 / 2-16: 4.9 / 7-16: 4.9 / 11-16: 5.0 / 6-17: 4.5
NED since resection

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Re: what is purpose of this forum?

Postby jhocno197 » Sun Jan 10, 2016 4:25 pm

This is a support forum. If a particular thread is not the particular support you need, find or start a different thread. Not everything in life is light and fluffy and full of joy, most especially not cancer! Some people want only upbeat positivism, some people want stark reality in whatever form. To each his own.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

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Re: what is purpose of this forum?

Postby BrownBagger » Sun Jan 10, 2016 4:31 pm

I've been in treatment for active disease for the past seven years, more or less, with no end in sight. And I remain pretty happy and optimistic about the future--looking forward to getting out of bed tomorrow and living my life, even though tomorrow is my chemo day. It's just the way I roll.

Perfectly healthy, ought-to-be-happy people commit suicide all the time. It's sad in an abstract sense, I guess, but it doesn't affect me or my day-to-day or my ability to enjoy my life. I don't think I'm a sociopath, though you might legitimately argue otherwise, based on what I just said. I can't control what other people think or say, so I just focus on making the best of my own situation.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

Sams wife
Posts: 753
Joined: Sun Jan 11, 2015 2:49 pm

Re: what is purpose of this forum?

Postby Sams wife » Sun Jan 10, 2016 8:59 pm

I'd agree with the sunshine & cereal posts!! I'm ready to start one asking who's 100% better but I don't think I want to know the answer.

I think if I wasn't on here my husbands blood clots would have went further. His thrush would have went further. Lots of stuff would not have gotten fixed if I didn't know what to look for. I'm not on Facebook & never joined any other forum. I'm glad I did here. I want the truth.

His family didn't want to see scans, didn't want to hear it might take a yr for healing. They wanted to listen to surgeon who said he would be better in 2 months. After surgery he told them 1 month. Pretty sure he got an infection & it could have been way worse if I wasn't watching. O well.

Thanks everyone for their experiences. Even if it wasn't (isn't) ours. It very well could have & may still be.
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

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Re: what is purpose of this forum?

Postby CRguy » Sun Jan 10, 2016 11:15 pm

Re: what is purpose of this forum?


1. to be HERE when nobody else is ...... in your own life
2. to share all the good and all the bad this JOURNEY brings us
3. to educate
4. to commiserate
5. to laugh
6. to cry
7. to LIVE
8. to die
9. to support
10. to BE

Harmony on the Journey
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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