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

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shellfry
Posts: 82
Joined: Sun Oct 16, 2011 8:41 pm

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

Postby shellfry » Thu Apr 19, 2012 4:14 pm

The thing that I like best about this forum is that you can say anything, without embarrassemet, because we all know the same symptoms and problems. It's the place to go if you need advice, support, or even a good laugh. Other people would not understand the wall of TP we have to store in our homes.
I just read something a few weeks ago, a woman was mentioning something about "sticky poo" Where else would you read this stuff?
I appreciate everyone's questions, answers and comments. This is a great place to be about such a crappy subject!
Michelle
Stage III Colorectal Cancer
2 lymph nodes involved
Resection Sept 2010
5-FU, Leucovorin, Oxiplatin
radiation
chemo complete May 2011
radiation complete Dec 2010
Port removed June 2011
permanent colostomy 9/2012 due to
complications from radiation
April 2015 Total Pelvic Floor Reconstruction

mvp
Posts: 40
Joined: Tue Sep 08, 2009 8:35 pm
Location: Wisconsin

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

Postby mvp » Thu Apr 19, 2012 7:21 pm

I too have to comment about how great this forum is. Although I am a lurker and not a poster, I just have to say how supportive everyone is. I gained so much information from everyone here and their willingness to share. I still check it and see what’s going on even though my dad has passed. I don’t know, maybe it is my way of not quite letting go ... but anyway, it is a supportive environment.

Although not quite the same, I recently joined a group for a condition my 13 1/2 year old dog has (basically a tumor on her adrenal gland). I was hoping it would be a place I could go to get support as we go through this process. We have decided, for many reasons (surgery risky, her age, the cost with no guarantee she would live any longer with treatment), not to treat her condition . However, when I got accepted to the group and started reading the posts, I know there is no way I can post anything because I will get “flamed” for not treating our dog. It’s great for people who want to find out about treatment options, but doesn’t seem very welcoming to those who don’t. Seems very judgmental in what I read.

So yes, appreciate the support given here. I think it is very rare.
Dad - Stage IV CC
9/09 Mets to Liver and Lung
9 rounds FOLFOX, 2 month Xeloda break then FOLFIRI
1/11 Numerous new spots in lungs - back on FOLFOX
3/11 Growth in both lung and liver. Off FOLFOX and trying Vectibix.
7/23/11 Passed away

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pollo65
Posts: 1564
Joined: Thu May 20, 2010 3:11 pm
Facebook Username: pollo2
Location: central valley, calif

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

Postby pollo65 » Sat Apr 21, 2012 8:55 am

I love this site and the people. I have tried other sites but they seem slow and cumbersome. Post,wait for answer (sometimes a week or more) and get little emotional response. I feel connected to everyone on this site and worry when they don't post, feels kinda like family is supposed to feel. :) I have been thinking about asking what everyone did for a living prior to the big C coming into their (our) lives, I bet we have a truly diverse group.
pollo 65
CC 1/6/09
r. hemi-colectomy 1/7/09
32Ln biopsied, 28 positive
met to aorta
chemo 12 rounds
done 9/09 3 scans clear
1/11 1 met to aorta
micro cluster to peritoneum
4/11 / 9/11 scan clear
4/12 scan clear
10/12 scan clear
Iri+avastin
chemo break

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 » Sat Apr 21, 2012 7:45 pm

Its like the other site isnt as accepting of caregivers. Like you have to post in a totally different section. And I have noticed all these deleted comments on threads. With this place there are people like me who is a caregiver speaking with people that HAVE cancer. And no one has ever made me feel like you don't belong. Everyone has time for me even though their lives are probably ten times more complicated than mine.
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

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Bill5107
Posts: 1376
Joined: Sun Jul 11, 2010 5:50 pm

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

Postby Bill5107 » Sun Apr 22, 2012 2:58 am

mymom wrote: 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.



First, I completely agree. I've never found a forum on CC as user friendly as this one. It does have a focus on information and at times tries to focus on that and nudge the "feel-good" type posts to more practical, pragmatic topics, but I think that healthy mix of perspectives is what makes it so good. People actually want to hang out with folks here and there are some fantastically knowledgeable people who have the patience to keep on helping us over and over again.

having said all that, I want to suggest that you keep on looking for BC support forums. There is so much noise and money and focus on it I find it hard to believe there isn't at least a FEW decent ones out there!?

Maybe I'm naive, I'm just sayin' that I really hope you can find something. . . And share it here when you find one. I would love to actually have a useful suggestion next time I hear someone share a new BC Dx with me. (I've learned of about 5 now since my CRC Dx. . . various stages and outcomes)
2010-07-02 Dx rectal cancer (Stage 3)
'-07-21 Chemoradiation
'-10-13 APR surgery, 10/18 nodes still active
'-11-22 12x2wk rnds FOLFOX
2011-12-07 Mets X-P
Don't retreat, reload!

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Terry
Posts: 5536
Joined: Wed Oct 03, 2007 10:36 pm
Facebook Username: Terry Minor
Location: Silver Cliff, Wisconsin

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

Postby Terry » Sun Apr 22, 2012 8:59 am

LOL Lee, I know exactly what boards your speaking of and I have been suspended also;)

It's nice to hear that you think so highly of this group. It's a shame you can't get the information your looking for for your mom without feeling like your pulling teeth. My youngest daughter has been on some of those because of the high risk she has for breast cancer on her dads side. She hasn't had much luck either and they laugh at her when she says she's thinking of being tested for the gene, having them both removed (if she has it) and then have them both rebuilt. I personally don't think that's the way she should go but I don't think laughing at her serves anyones purpose.

I pray your mom continues to do well.
Terry
DX 7/3/07
Chemo, radiation, 20 mo. chemo, IMRT, cyberknife, 6/11 lobectomy.
1/16 resection perm. colostomy intraop. rad.
PET 2/12 nose, thyroid, liver, lngs
Folfox 3/12
Lord I know You'll keep me here until
you know I cannot suffer any longer!

helen098
Posts: 2005
Joined: Sun Jul 01, 2007 2:07 pm
Location: Forest Hills New York

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

Postby helen098 » Tue Apr 24, 2012 3:49 pm

This is an amazing site with a great group of people, were like a family sure we sometimes argue or disagree but through it all we really care for each other and celebrate, curse and cry for each other.
The colon club was my first online support group and where i come to share my good news and bad and to see how my friends are doing
i celeberate my friends victorys and mour there losses just like i do my friends in the "real worl" sometime even more so
I have tried a few other groups fistula grp, diets, nurtistem was the worst and I was very disappointed in responses. If they didn’t ignore you they criticized you.

I tried to bring what we have here to other groups by being honest and sympathetic but mostly was ignored or criticized because I didn’t lose 10 pounds a week

Guess we just have to accept what a great group of people we are :o :D
stage 3A surgery 6/6/6 finished chemo jan 07
11 5FU/12 Levcouorin/10oxaliplatim
port removed jun 07
anal fistula surgery oct 05 may 07 feb 08 sep 08 jun 09

Peabody5422
Posts: 334
Joined: Fri Dec 09, 2011 10:21 am
Facebook Username: debbie.whitaker

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

Postby Peabody5422 » Tue Apr 24, 2012 5:47 pm

I agree. What a great place! It has kept me sane during all this. Even when I went to radiation, I met the nicest people. It was like having old friends around you while we waited our turn. Strangers that you probably would never talk to become your friends and I can't tell you how many hugs! It made the world a better place while we go thru this terrible disease.

Peabody 5422

PS - I just got my 1st scan after chem and rad and I am NeD! Yeah

Age 63
Rectal Cancer
DX: T1 N2 MX 12/21/11
Surgery 12/21/11
Xeloda & Rad 1/12 - 3/12
DX: RC 11/11 T1 N1c MX
Surgery: LAR 12/23/11
Rad & Xeloda: 1/12 - 4/12
Clean CT: 4/12
Reoccur: Lymp 4/14 4 new locations. 2 Aortic, 2 locations Rectum
Chemo to start: 6/14, OXI, Advastin, 5FU
10/14: One tumor left - on Avastin only
Surgeries: 4/15, 7/15 and 8/15 :last tumor w/Illeostomy then Ostomy
NED by 7/15 Surgery

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 » Tue Apr 24, 2012 7:38 pm

Bill...if i find one will let u know. Definately.
Terry....thanks for the warm thoughts. I wonr know much more until she has surgery. I am actually being tested for a gene as well...first meeting with genetic counselor day before i have my third...i like to multi task. Ha!

Will keep everyone uo to date on mom. Its been a journey!
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

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 » Tue Apr 24, 2012 7:39 pm

Bill...if i find one will let u know. Definately.
Terry....thanks for the warm thoughts. I wonr know much more until she has surgery. I am actually being tested for a gene as well...first meeting with genetic counselor day before i have my third...i like to multi task. Ha!

Will keep everyone uo to date on mom. Its been a journey!
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

User avatar
Bill5107
Posts: 1376
Joined: Sun Jul 11, 2010 5:50 pm

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

Postby Bill5107 » Tue Apr 24, 2012 11:38 pm

mymom wrote:Bill...if i find one will let u know. Definately.


Thanks. I'll continue to ask around too. . . no luck so far, the folks who asked me haven't found any yet either. (not a great sign I guess X-p)
2010-07-02 Dx rectal cancer (Stage 3)
'-07-21 Chemoradiation
'-10-13 APR surgery, 10/18 nodes still active
'-11-22 12x2wk rnds FOLFOX
2011-12-07 Mets X-P
Don't retreat, reload!

User avatar
CheeseHead
Posts: 1171
Joined: Sat Jul 31, 2010 2:36 pm
Location: Netherlands

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

Postby CheeseHead » Wed Apr 25, 2012 1:45 am

helen098 wrote:Guess we just have to accept what a great group of people we are :o :D

<looking in mirror critically, well, not THAT critically>Yes, I'd say you're right, Helen ;)

Very glad to have found this forum...

Cheers,
Cheese
    2008
    10 Stg 4 colon srgry
    12 Xelox/Avast
    2009
    05 Liver srgry
    -12 Xelox
    2010
    05 Xelox
    08 Iri/Vect
    11 Liver srgry
    2011
    01-05 Iri,Vect,Xeloda
    09 CyberKnife
    2012
    03-07 Ph I trial
    08-11 Regorafenib
    2013-
    Xeloda
    Vecti
    Iri
    Xelox


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