For those who have NOT had recurrance whatever the stage

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nicola smith
Posts: 1040
Joined: Thu Oct 07, 2010 9:06 am

Re: For those who have NOT had recurrance whatever the stage

Postby nicola smith » Mon Dec 31, 2012 2:44 pm

GLG and I are sort of cancer buddies - although she was always several months ahead of me and doing things 'the hard way' (in joke). She's right that we look for our special topics...mine appear to be butt burn and bidets :roll:

As to recurrence, my signature tells my story.
UC history
11/09: Dx, CEA 2.9
02/10: colectomy, temp ileo; pT3N1Mx
10/10: 12 Folfox6
03/11: jpouch
2010/11/12/13/14: 6 PET and/or CT's - NED
quarterly 03/2010- 03/2015: CEA range 0.8-1.3
03/2015: discharged to GP :D

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GreenLakeGirl
Posts: 774
Joined: Mon Jan 18, 2010 5:55 am
Location: Pacific NW

Re: For those who have NOT had recurrance whatever the stage

Postby GreenLakeGirl » Mon Dec 31, 2012 2:58 pm

Ha haa, Nic! I did seem to be the case of "here's what to watch out for"! I'm dealing with a case of pouchitis right now and am looking into talking to my insurance about VSL#3. I think it's still a hard sell even eight years later. I need to pop over to Sucks and check in there too...
2009, age 37 with a 2yo: CC, IIIB (T4N1M0). IBD history
2010-11: FOLFOX, 12 rounds. 5 surgeries (3-step Ileal j-pouch, infection, VATS)
Currently NED.
Mom, you can go the hard way if you want, but the easy way is much easier. ~my 3yo

nicola smith
Posts: 1040
Joined: Thu Oct 07, 2010 9:06 am

Re: For those who have NOT had recurrance whatever the stage

Postby nicola smith » Mon Dec 31, 2012 3:26 pm

GLG, there's a version of VSL3 called VSL#3-DS (double strength) that requires a prescription and is covered by some insurance companies though I understand it's a struggle. It's stronger than the OTC version - contains 900B cells as compared to the OTC version which has 450B.

Here are the drug codes for VSL3DS

NDC (National Drug Code) is 54482093001.

GCN (Generic Code Number) is 97109.

DIN (Drug Identification Number) is 00903105

My insurance company refused to cover the regular VSL and since the double strength version is not available here at all, I can't test that option. I can, however, claim the expense for regular VSL on my tax return.

I did read of one person who bought the VSL DS and used it to make her own VSL DS yogurt. I guess that would work...certainly it would be cheaper.

N

PS. some nice pix on Sux lately
UC history
11/09: Dx, CEA 2.9
02/10: colectomy, temp ileo; pT3N1Mx
10/10: 12 Folfox6
03/11: jpouch
2010/11/12/13/14: 6 PET and/or CT's - NED
quarterly 03/2010- 03/2015: CEA range 0.8-1.3
03/2015: discharged to GP :D

Lee
Posts: 6202
Joined: Sun Apr 16, 2006 4:09 pm

Re: For those who have NOT had recurrance whatever the stage

Postby Lee » Mon Dec 31, 2012 4:45 pm

I was diagnosed in April 2004, stage IIIC coming up on 9 yrs since diagnoses. In August of 2013, I will be 9 yrs in NEDville. I was fortunate, no mets or recurrence. I look forward to my 10 yr mark.

I don't hang out as much as I once did, but I still check in every so often.

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!

adina91
Posts: 490
Joined: Wed Aug 25, 2010 6:36 pm
Facebook Username: Adina Jewett
Location: Los Angeles, CA
Contact:

Re: For those who have NOT had recurrance whatever the stage

Postby adina91 » Mon Dec 31, 2012 7:47 pm

Yay Lee! Coming up on 10 years! That really makes me feel good. :D
Adina 42 yo, mom of 2 sons (5,9)
11/2009 - DX-2B CC-Sigmoid resect/colostomy
Lynch Synd MSH2
1/2010 - FLOX chemo
5/2010 - Subtotal colectomy/hyster/ileostomy
Stage 3A - 1/42 LN +
8/2010 - Chemo done
10/18/2010 - ileostomy takedown
2010 - 2015 - NED
5/1/15 - "suspicious" area in liver on CT
5/14/15 - follow up PET says no metastatic disease
6/19/15 - MRI - NED!

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: For those who have NOT had recurrance whatever the stage

Postby justin case » Mon Dec 31, 2012 8:36 pm

I probably don't count much. I was done with surgery, march 2012. I had 2 tumors, 1 sigmoid, 1 rectal. 12 weeks adjuvant chemo, and no problems at all.
I'm still here for information, and my friend Rix, asked me to keep an eye on things.
Regards,
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

tobasco39
Posts: 56
Joined: Wed Feb 06, 2008 4:54 pm
Location: Indiana

Re: For those who have NOT had recurrance whatever the stage

Postby tobasco39 » Mon Dec 31, 2012 11:00 pm

I was stage iia. Just had my 5 yr 2 month ct scan two weeks ago. NED. I still visit colon club every day!

Tobasco39

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

Re: For those who have NOT had recurrance whatever the stage

Postby Patience » Tue Jan 01, 2013 12:28 am

My husband is free of CC after nearly 10 years, stage 1 (resection, no chemo/radiation). Unfortunately, he now has primary stage IV lung cancer.

From what the pathology has shown, it is not CC mets. Side comment, off topic: But as for pathology, he had a misdiagnosis on the type of lung cancer, so after that, I've learned that there is room for error in pathology, even when they profess to know the disease. :(
"Sweet dreams till sunbeams find you.
Sweet dreams that leave all worries behind you."

tallyho
Posts: 138
Joined: Sun Aug 01, 2010 8:39 pm
Location: Florida

Re: For those who have NOT had recurrance whatever the stage

Postby tallyho » Tue Jan 01, 2013 12:33 pm

I am 2 1/2 years out from a stage I diagnosis. I had a 13 cm partially obstructing tumor in the sigmoid colon.

This fall I had a clean CT scan and won't need another one unless I have symptoms of recurrence. I also had a clean scope, so I won't need another colonoscopy for 3 years, and I am on a twice yearly schedule with the oncologist.
7/27/10 DX Stage I at age 30
9/3/10 sigmoid resection, 0/56 nodes +, no chemo
10/12 - CT - NED!

Grace14
Posts: 417
Joined: Mon Oct 24, 2011 7:42 pm

Re: For those who have NOT had recurrance whatever the stage

Postby Grace14 » Tue Jan 01, 2013 1:36 pm

So far so good for me too! I will find out on Jan 31 if I am still NED!! It's been almost 3 years since I was diagnosed! Crossing my fingers. I'm trying so hard not to think about these scans yet. At my last appointment I told my Onc that I was very nervous about these scans and she said that she would fall off her chair if she saw anything on these scans! Boy I hope she's right.

She also said that if my scans were clean I would be on a 6 month schedule instead of 3 months! Wouldn't that be awesome!
Diag Stage 2a R/C April 2010 at 38
Rad/chemo 6 weeks
Apr surgery July 2010
Folfox 4 months
Jan appendix removed
Feb diag papillary thyroid cancer no treatments stage1
Ned so far!!!
Mother of 4 boys 21 18 11 8

SusanNore
Posts: 88
Joined: Mon Feb 04, 2008 9:12 pm
Location: Encinitas CA

Re: For those who have NOT had recurrance whatever the stage

Postby SusanNore » Tue Jan 01, 2013 1:38 pm

Dx summer 2005 stage III rectal; been NED since finishing up with surgery, chemo, rad in early 2006. Still checking in every few days to see how everyone is doing; to quietly celebrate your successes and to grieve our losses here. Happy New Year to all.
Dx 6/05 Stage III Rectal w/lymph mets; LAR surgery 7/05, completed Folfox and radiation 3/06.

lorrainem
Posts: 819
Joined: Tue Dec 18, 2007 2:34 pm
Facebook Username: https://www.facebook.com/lorraineaminogue
Location: NY

Re: For those who have NOT had recurrance whatever the stage

Postby lorrainem » Tue Jan 01, 2013 3:22 pm

Diagnosed age (10 days shy of) 47 in 2007
Surgical cancer removal January 2008
NED since. I celebrated my five years in 2012, my surgeon wanted me to wait until January 2013. I asked if there was nothing changed, and there are some thingies lurking, could I just graduate in August 2012. We agreed. So...five years for me...for now, but I'll take it and run with it!
Chemorad/Surgery/Chemo
Stage II, no mets, no nodes NED 05/08 again 08/08 again 11/08
Ileostomy reversal 10/16/08

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wwroam
Posts: 763
Joined: Sun Apr 06, 2008 8:13 pm
Facebook Username: Wayne Whitaker
Location: Brisbane, Australia
Contact:

Re: For those who have NOT had recurrance whatever the stage

Postby wwroam » Tue Jan 01, 2013 11:11 pm

Happy New Year lurkers and posters.
I'm now well past my 5 year NED mark, and apart from a T2 Diabetes diagnosis, I have nothing "interesting " to report. Were cancer as easy to control as diabetes.
Wayne
Stage 3a DX 25/06/07
Folfox complete 30/01/08
7 years NED
Port scheduled for removal 8/02/10 Gone.
PSA .54 No prostate problems
Diagnosed Type 2 Diabetic
SO diagnosed CC Stage IV Liver Mets 23/03/15

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RayGirl
Posts: 1281
Joined: Wed Jun 16, 2010 4:21 pm
Location: Texas

Re: For those who have NOT had recurrance whatever the stage

Postby RayGirl » Wed Jan 02, 2013 10:29 am

Diagnosed Feb '10, wow, almost three years ago!?!? where did the time go. I lurk a few times a week or less nowadays, and only post randomly, usually on new/about-to-be-new reversal. Treatment days are getting fuzzier as time progress, guess I don't feel the need to retain how that felt. My days are so overbook with trying to cram so much living in, that sometimes I do go a long bit between logging on. As some have said, that's a good thing!

Good
Stage III Rectal: T3, 3/21 Nodes
dxn:Feb-10
Radiation&Xeloda
7.5 hr surgery
12th FOLFOX Nov-10
Takedown:Jan-11

"Life is not about waiting for the storm to pass, it's about learning how to dance in the rain."

mymaria
Posts: 132
Joined: Wed Jan 20, 2010 2:17 pm

Re: For those who have NOT had recurrance whatever the stage

Postby mymaria » Wed Jan 02, 2013 10:38 am

Great topic! Diagnosed Nov. 19, 2009 with stage 2A colon cancer, which was preceded by a uterine cancer diagnosis in June, 2009. Continue to remain NED, get annual colonoscopies and CT scans every six months. After my January scan he's going to push me back to a CT once a year.
Endometrial cancer stage 1B grade 3, July '09 age 43
34 negative l.n.
Radiation Aug. and Sept., '09
Colon cancer T3N0M0, grade 3, Dec. '09
54 negative l.n.
Modified Folfox 6 regime started Jan. 12, '10
Stopped after 3 rounds Feb. 9, '10
Lynch Syndrome


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