I stand up to use the word cure(d)....

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cptmac
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I stand up to use the word cure(d)....

Postby cptmac » Fri Jun 01, 2012 8:48 pm

Just as I stand up to cancer.

People tried to bully me into not saying cured in the past. It took a long time before I would say I was cured, because it hurt peoples feelings. So I said NED far longer to respect their feelings, even though my doctors said I was cured. And then I thought, what about my feelings. I want to say I'm cured. I want to celebrate my good fortune. I finally changed my signature to some backlash.

Some people don't like my optimistic posts, some people don't like the messages that seem to give people hope. I do appreciate hearing others opinions. I don't appreciate people who do so with the intent of bullying them off the board or silencing them.

Because of the way I've posted, a fellow clubber called me because her Mom was in the er. The doctors said she was going to die. I told her to call a top cancer doc and ask for another opinion. This top doc, who had no privileges at the er where she was at said take her out of here. She did, her mom is still alive today. Cured, they've said. A word we both like.

It's my choice to say cured, respect that. Ignore it if you don't like it. But I shouldn't have to apologize that I had a good outcome. I shouldn't have to apologize for wanting to celebrate because I had a good outcome.

As far as definitions, definitions change all the time. I take issue that bootylicious is a word, yet trepidatious is not. But I don't rule what goes in the dictionary, I don't rule what the definition is. People hurt my feelings, I hurt their feelings, but for me, it all goes to the intent of what someone is saying. If your intent is to bully me into not using the word cure, that is not right. If your intent is to let me know why you don't appreciate me using the word cure, I'll be respective of that, and try not to use the word around you.

No matter your words, don't bully anyone to not post just because you disagree.

One of the main reasons I rarely come on here anymore is, I got tired of being asked not to post.... and defending myself.

It's hard to believe that something I posted sooo long ago, got locked, because some people don't like it when you use the word cured.

So for those of you who like using the word cured, stand up and do so.... Don't be bullied into not using it. For those of you who don't like using it, then don't race for the cure.... race for NED, race to the end, but don't silence those of us who choose to use the word cure.

For those who choose, stand up, and change your signature to cure.... and I don't mean that in a bullying sort of way... :D
cptmac
As long as you're alive, there is hope.
dx 7/04 stage IV
colon resection 8/04
liver resection 9/04 with HAI pump installed
Stage II trial w irinotecan as systemic and FUDR for direct chemo to liver via HAI pump
Cured since 9/04

AJS
Posts: 753
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Facebook Username: Angie Jennings Stratton
Location: Virginia

Re: I stand up to use the word cure(d)....

Postby AJS » Fri Jun 01, 2012 9:24 pm

cptmac....... I think the word cured and what it means is awesome and I am soooooo happy you can use it! :D
[size=50][color=#FF00FF]Diverticulitis/Resection 12/27/07
Dx 1/08-Stage IIIA CC-2/15 Lymph Nodes-42 yrs old
2/08-8/08 -Folfox/Erbitux
Hysterectomy 3/09-CC on Ovary-Folfiri&Avastin
1/12-resection,bladder surgery,illeostomy
3/12-Illeostomy takedown
5/13-Folfiri/Avastin

vancouver eve
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Location: Vancouver

Re: I stand up to use the word cure(d)....

Postby vancouver eve » Fri Jun 01, 2012 9:44 pm

Cptmac, I fully agree with you. There are some people that are not even stage 4 and have been NED for years but they think they know what it is like to be a stage 4. It makes my blood boil. If you have not been in the same position as a stage 4 then I don't think you know what you are talking about. Until you have been in a stage 4's shoes, your opinions should be kept to yourself about how you understand how we feel. I think some people just like to spout about nothing just to see themselves on the board posting.

janklo
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Re: I stand up to use the word cure(d)....

Postby janklo » Fri Jun 01, 2012 10:17 pm

"As long as you're alive, there is hope."

Amen to that sister!!!! :)
Mom to 28 yo daughter
colectomy 2/22/10, stage 3C, signet cell
7/2011 peritoneal mets
HIPEC September 2012, difficult recovery
Hospice 10/31/2012, Died 11/16/2012

Sandy gma
Posts: 88
Joined: Sun Dec 04, 2011 8:56 pm

Re: I stand up to use the word cure(d)....

Postby Sandy gma » Fri Jun 01, 2012 10:30 pm

I am thankful that you are cured and look forward to the day when my daughter can say she is cured. I believe that if you think you have a disease that will never be cured then you will most likely never be cured. You have to have a goal. "CURED" is our goal. Period. May you always stay cured!

Jachut
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Re: I stand up to use the word cure(d)....

Postby Jachut » Fri Jun 01, 2012 10:42 pm

Where's the applause icon?

I use the word cured. Treatment leaves us with many issues and challenges, but I dont believe cancer is one of them for m right now.

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Ashlee H.
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Location: Southern California

Re: I stand up to use the word cure(d)....

Postby Ashlee H. » Fri Jun 01, 2012 10:48 pm

CPTMAC - All I know is from day one, you have been supportive to me on my journey. I've been encouraged by your story. "Cured" is a beautiful word. After my liver resection, we thought I was cured. Then after my HIPEC we thought I was cured. I haven't given up. It's a shame that feelings get hurt over interpretation of words. I'm just so glad, whatever happened in the past here for you, that you chose to come back and tell your story. As the years go on, more and more people are getting cured. The stats are slowly changing. I have no doubt one day we will find a way to turn off the cancer cells. I know if I was DX in the 1990's, I would have probably died in the first year. But medicine has come up with new treatments, and I'm so glad I'm around to benefit from it.
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!

Day days

Re: I stand up to use the word cure(d)....

Postby Day days » Fri Jun 01, 2012 11:41 pm

geez! Vancouver Eve, what was your comment about? Why are you so angry? I'm a stage 3 but I know that I've given support to stage 4's before. Isn't that what this board is about? To offer support and understanding to each other. Why does that make your blood boil? I don't get mad at stage 1 or 2's.

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Sleetster
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Re: I stand up to use the word cure(d)....

Postby Sleetster » Sat Jun 02, 2012 12:10 am

I would love to say that I am cured. My onc has said that because all of my mets have been resectable that I can still be cured, though if it happens it will be a ways off yet. That brings me to my question. How does one know when one is cured? With recurrances coming several months or years after being NED it seems that proclaiming one's self to be cured is a guess.

I hope my onc is right. I want to be cured, but at what point can one make that determination?
David
5/09: Stage 3B
6/09: L hemicolectomy
7/09-12/09: FOLFOX
2/10: CT; NED
2/11: CT; 3 lung spots
3/11: biopsy; lung mets; Stg 4
3/11: PET; liver & abd. muscle mets
3/11-8/11: FOLFIRI
10/11: Liver wedge & abd. tumor exc.
2/12: 6 more rounds FOLFIRI

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aussielones
Posts: 403
Joined: Mon Jan 24, 2011 6:17 am

Re: I stand up to use the word cure(d)....

Postby aussielones » Sat Jun 02, 2012 12:30 am

I love your posts cptmac, and I LOVE the word cured!
31y/o
Dx 24/9/10
Cecum, liver, LN, lungs
Sg IV C.C inoperable
Folfiri, Xeloda ,FOLFOX. More FOLFIRI
Regorafinib nearly killed me. But I'm still alive! LOVE BEATS CANCER

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hopeful
Posts: 1372
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Re: I stand up to use the word cure(d)....

Postby hopeful » Sat Jun 02, 2012 1:43 am

You give me hope. I love to read your posts and I love being reminded that there is hope.
Caregiver to husband diagnosed 11/09 stage IIIb colon cancer
Surgery 11/5/09
12 rounds FOLFOX beginning 12/18/09
Folfox finished 6/3/10
Last scan Jan 2015
NED since Dec. 2009

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

Re: I stand up to use the word cure(d)....

Postby CheeseHead » Sat Jun 02, 2012 1:56 am

Great post, CptMac!

Aiming for the cure myself.. which might happen or not, regardless, I'm living life now.

Thanks,
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

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

Re: I stand up to use the word cure(d)....

Postby disco nap » Sat Jun 02, 2012 6:11 am

Cptmac, you have one of the best stories on here. I'm glad you've stuck around this forum to share it.
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.

Surroundedbylove
Posts: 3124
Joined: Tue Dec 16, 2008 6:43 am
Location: Seattle

Re: I stand up to use the word cure(d)....

Postby Surroundedbylove » Sat Jun 02, 2012 8:42 am

I agree that there are absolutely times that the word cure is appropriate and correct. I think part of the challenge is that even in the medical community they are trying to figure out when it can be used. :-) I tried to find the link to the work at MSKCC about 10 years cancer free and using the word cure - even with metastatic colorectal cancer. I couldn't find the direct MSKCC work but here is another study that mentions it - bottom line - there is starting to be scientifically based reasoning for the potential to "cure" metastatic colorectal cancer.

http://www.cancernetwork.com/colorectal ... 65/2044898

There have also been studies done (no time this morning to find them again - sorry) about the importance in being seen from the very start at certain kinds of hospitals/clinics. The survival rates and therefore cure rates are simply better and being seen at those better hospitals/clinics later doesn't seem to have the same result. All of these things help guide a patient to things that might be done to optimize the chance for a cure.
Surroundedbylove

Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown ‘09
LARS for 10 years before learning it is finally being studied
InterStim Sacral Nerve Neuromodulator 2019

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fcancerIsay
Posts: 37
Joined: Tue May 08, 2012 6:56 pm

Re: I stand up to use the word cure(d)....

Postby fcancerIsay » Sat Jun 02, 2012 9:06 am

Thanks for proudly standing up to use the word cured, CPTMAC. I like it! :D
Diag. 6/11 Stage IV CC, Mult. Mets to liver, Nodes
Full Hysterectomy due to CC 8/12
Chemo 6/11 - 2/13
Clinical T Cell Trial 3/13
Onc says "Chemo for Life", but I say "NED One Day" :)
F Cancer I Say!


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