what a difference in forums...perhaps I am spoiled

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mymom
Posts: 1283
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

what a difference in forums...perhaps I am spoiled

Postby mymom » Wed Apr 18, 2012 3:54 pm

OK- so I have to say this. As some of you know, mom has a new primary cancer- breast. They think very early stage. NEW primary, not a met. She will probably choose to just have the affected breast removed so she doesnt need radiation or chemo. That is what she is leaning towards with immediate reconstruction in same surgery. Until they do surgery, I am not freaking out. My gut says its fine. I am much more worried about her colon cancer.

That said, of course I joined a breast cancer forum because it is a new animal (the staging for it is sooo much more complicated). Lets just say my experience with the BC forum is waaaayyyy different. I felt welcomed here within the first hour. I got more information from you than I could digest. I feel like on the other its like pulling teeth. Anyway, just figured I would let everyone know what a special place this is although you probably already know it.
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16-current NED

SkiFletch
Posts: 6361
Joined: Mon Dec 07, 2009 3:39 pm
Facebook Username: Michael Fletcher
Location: Buffalo, NY

Re: what a difference in forums...perhaps I am spoiled

Postby SkiFletch » Wed Apr 18, 2012 3:57 pm

It's definitely a unique corner of the internet huh? I've been around a whole bunch of forums in my life and never found one like this
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D
Still NED and living life to the fullest

"Can any one of you by worrying add a single hour to your life."

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: what a difference in forums...perhaps I am spoiled

Postby BrownBagger » Wed Apr 18, 2012 3:59 pm

Like you, my experience with other message boards and support groups goes something like: Post a question and check back a week later to see if anyone bothered to answer it. Oftentimes, they don't.

I don't know what makes CC different, but I do know we have a great group of intelligent, caring and articulate members, and that's what makes it work as well as it does. I wish they could all be like this--the world would be a better place.
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.

Lee
Posts: 6200
Joined: Sun Apr 16, 2006 4:09 pm

Re: what a difference in forums...perhaps I am spoiled

Postby Lee » Wed Apr 18, 2012 4:22 pm

This place is special, as Molly states, a jeans and T-shirt friendly type of place. There is another forum that I once belonged to, I will not mention names, but a few people on this board know who I'm referring to. The rules and the way they monitored that site is so OVER THE TOP, that they continuely lose good people. It's like a ghost town.

Once I tried to help someone there when other people gave up on him (including his own doctors). He thanked me for being nice to him. But the next day when he failed to show up for his scope (for like the 12th time), I told him he costing the hospital, Drs, nurse, etc money EVERYTIME he backs out at the last minute for these appt. Suddenly I'm not being nice to him anymore (because I made that comment to him), he reports me and I get suspended. Anyway after that I decided I was done there. I believe just about everyone I knew there has been suspended.

If it is the same site (and they have other forums besides CC), there probably not going to get much help. And it's a real shame.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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barbara jayne
Posts: 757
Joined: Thu Feb 26, 2009 7:08 am
Facebook Username: Barbara Allenhttps://www.facebook.com/barbara.alle
Location: Wales, UK

Re: what a difference in forums...perhaps I am spoiled

Postby barbara jayne » Wed Apr 18, 2012 4:35 pm

Hi All :D
Just felt like I had to add my thanks too !
This forum is soooo helpful and friendly,think Ive mentioned it before but I have learnt more here than from absolutely anywhere else at all !!! I think we're also a bit starved of info from the medical profession here in the UK :roll: don't know why !

Barbara x
DX. Colon Cancer (Cecum) stage 3
Right hemicolectomy Jan '08
2/22 L.nodes positive
Oxi and Xeloda
Xeloda discontinued
due to DPD enzyme deficiency
Lynch Syndrome
11 years NED
Facebook user name,
Barbara Allen https://www.facebook.com/barbara.allen.927

JAZZToo
Posts: 509
Joined: Sun Oct 01, 2006 10:46 am
Location: New York City

Re: what a difference in forums...perhaps I am spoiled

Postby JAZZToo » Wed Apr 18, 2012 5:49 pm

Lee
I still go on there occasionally to be of help if no one has answered a question that I've had experience with. I never got thrown off but did get several "demerits and warnings". Many times you don't even know if the person ever saw your response cause they don't return when they see how few and infrequently people post there. I see Alison on there too once in a while, also trying to help the newbies.

MyMom
Here is a link to a good breast cancer board and resource center: http://www.bclist.org/join.htm. There is also a chat room for breast cancer on that site.

Leslie
Lynch Syndrome
2004 ADH 5 years Tamoxifen
2003 Colon Cancer Stage III
1995 Endometrial Cancer Stage I

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TripMama
Posts: 100
Joined: Wed May 18, 2011 10:10 pm
Location: Oregon

Re: what a difference in forums...perhaps I am spoiled

Postby TripMama » Wed Apr 18, 2012 5:54 pm

I'm not too familiar with other sites, but this one is saving my sanity. I cannot say enough good things about it.
DH Robert, dx 4/29/11, RC, Kras mut, L/L mets; CEA 146.2
4/29/11 5FU
7/11/11 Xeloxi/Avastin
2/17/12 Stopped oxal
4/23/12 Growth of primary and mets
4/25/12 palliative rad
6/20-8/30 half-dose iri only
9/13/12 chemo stopped
10/2/12 Hospice
10/4/12 Passed

mymom
Posts: 1283
Joined: Fri Aug 12, 2011 11:07 pm
Location: Connecticut

Re: what a difference in forums...perhaps I am spoiled

Postby mymom » Wed Apr 18, 2012 5:55 pm

Totally checking out other sites.
Stage 4 CC DX 5/11
colon/livr rsct 5/11(1 met)
Folfox July-11/11
NED to 5/12
New Primry BC-4/12,Stage 1
2 livermet 5/2012
Liver rsct,HAI 6/12,Folfiri
NED to 10/13,1 liver met,ablation, Folfiri
NED to 12/14, another spot
3/15 NED
Ablation 1 liver met 10/15
1/16-current NED

SMR
Posts: 631
Joined: Thu Feb 16, 2012 1:20 pm

Re: what a difference in forums...perhaps I am spoiled

Postby SMR » Wed Apr 18, 2012 7:21 pm

Adding my appreciation to the mix as well. I can not fathom how much more lonely and less informed I would be without this site and all of you. My husband realized today some of what I have been doing "Behind the scenes" and asked me "who is your support?" I tapped my phone and said I have a network of friends who help me every day. He actually asked me to log in to thank you all from him, and I saw this post.
DH DX 10/11 st IV unkown prmry
FFOX 12/11
HIPEC 3/12
FFOX 5/12
7/12 FFIRI
12/12 xeloda
1/13 resection
2/13 FFIRI
4/13 5FU/Avastin
9/13 recurrence, failed surgery
Abdominal fistula
11/13 gemzar, heart attack
12/13 Carbo
2/14 Radiation
3/28/2014 passed

NWgirl
Posts: 6659
Joined: Sat Feb 02, 2008 3:24 am
Facebook Username: Belle Piazza
Location: Battle Ground, Washington

Re: what a difference in forums...perhaps I am spoiled

Postby NWgirl » Wed Apr 18, 2012 7:27 pm

This is always the place I come first - good news or bad. I know everyone here "gets it" and I feel safe here with my feelings.

Sadly, over the past few years, we've lost some really, really great people. But it's not because they were banned - it's because of this stupid, horrible disease. I'm not one to do a lot of research on my disease - but there are a number of people here who do and are so ready and willing to share their knowledge and experiences.

My journey would be so much more difficult without The Colon Club. I am eternally grateful to Molly, all those who support this site and all who participate here.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

SugarBubbie
Posts: 239
Joined: Sun Jun 12, 2011 3:55 pm
Facebook Username: Rhonda Pinkston
Location: Texas

Re: what a difference in forums...perhaps I am spoiled

Postby SugarBubbie » Wed Apr 18, 2012 8:23 pm

I feel the same way about the breast cancer forum I would go to. No real help and "my life is over" crap. I don't have time for the negatives so that's why I come here. For the positives. Because that's what CC is , the most positive forum there is.
DX Stage II anal cancer 2007 age 57
Radiation 6 weeks, Xeloda/oxilaplatin
DX Breast cancer Jun 2011 Stage3 one lymph nodes
Taxol 12 weeks FAC 4 tx, 31 radiations
5 year survivor certificate from MDA 2012 for anal cancer
DX triple neg bc oct 2015 4 rounds adriamyicyn, 20 radiations
"Positivity has no downside"

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Patience
Posts: 834
Joined: Fri Dec 09, 2011 10:26 am

Re: what a difference in forums...perhaps I am spoiled

Postby Patience » Wed Apr 18, 2012 11:28 pm

The fact that the people on this site are so helpful and welcoming is why I still linger here, even after finding out that my husband's new cancer was not CC Mets.
"Sweet dreams till sunbeams find you.
Sweet dreams that leave all worries behind you."

Lee
Posts: 6200
Joined: Sun Apr 16, 2006 4:09 pm

Re: what a difference in forums...perhaps I am spoiled

Postby Lee » Thu Apr 19, 2012 1:13 am

JAZZtoo wrote:Lee
I still go on there occasionally to be of help if no one has answered a question that I've had experience with. I never got thrown off but did get several "demerits and warnings". Many times you don't even know if the person ever saw your response cause they don't return when they see how few and infrequently people post there. I see Alison on there too once in a while, also trying to help the newbies.


Leslie
Lynch Syndrome
2004 ADH 5 years Tamoxifen
2003 Colon Cancer Stage III
1995 Endometrial Cancer Stage I


Hi Leslie,

I'm glad you are going back. It was almost a yr before I realized I could not even view the site anymore (because I was suspended). Guess I'm able to view the site now, but I don't go there except once or twice a yr. Don't think I can sign in even if I wanted to. It's a shame.

Lee

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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Guinevere
Posts: 3358
Joined: Tue Oct 11, 2011 4:19 pm
Location: NE TX

Re: what a difference in forums...perhaps I am spoiled

Postby Guinevere » Thu Apr 19, 2012 2:33 pm

I love this site! I wouldn't have gotten through my chemo and known what questions to ask if not for the help I've received here. I've checked out some of the other cancer forums and didn't feel like they would be a fit. This one fits me just fine! :wink:
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

so-scared
Posts: 1059
Joined: Wed Jun 01, 2011 12:53 pm

Re: what a difference in forums...perhaps I am spoiled

Postby so-scared » Thu Apr 19, 2012 3:26 pm

I echo what all the others have said. I really don't post too much but read daily. I have learned so much here in a relatively short period of time. The information and support here is so helpful to so many!!

So-s
DH 51 yo
dx 5/16/11 stg 4 RC
mets both lobes liver & lung
6/11 chem/rad
FOLFOX 9-12/11
12/11 TME/liver resect/rfa (15 tumors)
more Folfox w/Avastin
5/12 innumerable mets liver
Folfox/Avas FAIL
9/12 FOLFIRI/Erb FAIL
HAI pump 12/12
Had to leave 5/23/14


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