Bad news yesterday

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ANDRETEXAS
Posts: 662
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Bad news yesterday

Postby ANDRETEXAS » Mon Jan 09, 2017 2:34 pm

I am wishing you the best of luck and sending prayers your way. I have a friend who has been battling colorectal cancer for as long as I have. She has been on many different chemo drugs and combinations of those drugs. (I never knew there were so many combinations !) Some help decrease the size of some of her tumors or keep them stable, while other tumors increase in size on the same drugs. It's finding the right combination. She has been on stivarga for the past three months with very good results. Unlike many, she has tolerated stivarga excellently. She is now going to a center in San Antonio (we're in Austin) for a different drug trial to see if it will decrease, stabilize or eliminate her tumors. If not, she goes back on stivarga. I guess to make a long story short....hang in there....there are more options (drugs and trials) available day after day. Your positive attitude will help you immensely. I tell my doctors, stable and boring sound good to me. My prayers for you to find something that works.... 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

ONE DAY AT A TIME !

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Colontown

Postby BeansMama » Mon Jan 09, 2017 3:01 pm

Green Tea wrote:
Marylandmaniac wrote:... Are you on Facebook? I joined Colontown which is a closed group and very supportive as well. I know they have been very busy because there was a news report that mentioned them.

Colontown News Report:
http://www.nbcnews.com/health/cancer/colon-cancer-patients-seek-latest-treatments-through-social-media-n700591

Image


Thank you GreenTea! Very interesting article, I have started the steps to join, the existence of those boards give me hope that I will beat this!
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Bad news yesterday

Postby BeansMama » Mon Jan 09, 2017 3:04 pm

ANDRETEXAS wrote:I am wishing you the best of luck and sending prayers your way. I have a friend who has been battling colorectal cancer for as long as I have. She has been on many different chemo drugs and combinations of those drugs. (I never knew there were so many combinations !) Some help decrease the size of some of her tumors or keep them stable, while other tumors increase in size on the same drugs. It's finding the right combination. She has been on stivarga for the past three months with very good results. Unlike many, she has tolerated stivarga excellently. She is now going to a center in San Antonio (we're in Austin) for a different drug trial to see if it will decrease, stabilize or eliminate her tumors. If not, she goes back on stivarga. I guess to make a long story short....hang in there....there are more options (drugs and trials) available day after day. Your positive attitude will help you immensely. I tell my doctors, stable and boring sound good to me. My prayers for you to find something that works.... Andre


Thank you Andre, I will not stop looking for a cure. I agree stable and boring is doable for me as long as it gives me more time with my loved ones.

I will keep praying for you as well.
Beans.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

Coloncancerqueen
Posts: 25
Joined: Tue Aug 23, 2016 12:37 pm

Re: Bad news yesterday

Postby Coloncancerqueen » Mon Jan 09, 2017 7:21 pm

Sorry to hear this. Please know that we are praying that you will be in 60%. You can do it. Courage.
Dx 5-15
Right hemicolectomy 5-15
11 rounds of fol fox finished 11-15
6-16 elevated CEA 7.7
7-16 more elevation in CEA 13.1
Summer of 2016 2 ct scans, pet scan, MRI, ultrasound
8-12-16 Second opinion sought
8-16 biopsy revealed mets to ovary
9-16 both ovaries removed
10-16 CEA 2.6 clean scan NED
11-16 CEA 1.1, 1-16 CEA 1.5

User avatar
BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Bad news yesterday

Postby BeansMama » Tue Jan 10, 2017 6:55 pm

Coloncancerqueen wrote:Sorry to hear this. Please know that we are praying that you will be in 60%. You can do it. Courage.


Thank you so much!
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

crazylife
Posts: 256
Joined: Wed Dec 30, 2015 11:29 am

Re: Bad news yesterday

Postby crazylife » Tue Jan 10, 2017 11:58 pm

Prayers for you! I so wish you could see dr. Kemeny from MSK. She may be able to shrink that one met with hai and get it respectable. So many have had luck with her.
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)
Right lung surgery, November 2017
Left lung surgery, January 2018
NED - May 2018

BIG ROB 69
Posts: 63
Joined: Sun Aug 28, 2016 2:00 am
Location: Long Island, NY

Re: Bad news yesterday

Postby BIG ROB 69 » Wed Jan 11, 2017 4:27 am

You can look me up under medi4736 clinical trial.
3/18/2015 DX CC Stage3/4 49YO MALE IN NEW YORK
Inoperable...hepatic artery
11/15 oper to rem block...colon bypass
4/16 oper to remove scar tissue
5/16 Lynch pos.
10/16 Two bile tubes installed to relieve jaundice
So far I have done the three main chemo drug rounds and on 12/19/16 start Keytruda.
No chemo after 8/3/16 CEA: 10/14/16-409 12/19/16- 887 Mostly my CEA was in the 140-180 range.
CEA: 1/9/17-415 1/30/17-156.2 2/20/17-120.8 3/13/17-98 4/21/17-83.6 5/12/17-64.7 6/1/17-32.1
7/25/17-32.6

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BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Bad news yesterday

Postby BeansMama » Wed Jan 11, 2017 9:39 am

crazylife wrote:Prayers for you! I so wish you could see dr. Kemeny from MSK. She may be able to shrink that one met with hai and get it respectable. So many have had luck with her.


Unfortunately travel that far is out of the question for me.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

User avatar
BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Bad news yesterday

Postby BeansMama » Wed Jan 11, 2017 9:39 am

BIG ROB 69 wrote:You can look me up under medi4736 clinical trial.


Will do thanks!
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

Pebblesgrgrma
Posts: 21
Joined: Fri Nov 25, 2016 3:58 pm

Re: Bad news yesterday

Postby Pebblesgrgrma » Wed Jan 11, 2017 2:07 pm

Sorry to hear that. Thanks again for your support of me during my dads travels. I will be praying for you for comfort and peace.

User avatar
Rob in PA
Posts: 2022
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Bad news yesterday

Postby Rob in PA » Fri Jan 13, 2017 3:55 am

Sorry to hear the news beans :( . Chemo was a bust for me too, butt I found a way to keep on ticking and I pray the same happens for you too. Damn this disease :evil:
Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
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

User avatar
BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Bad news yesterday

Postby BeansMama » Sat Jan 14, 2017 8:08 am

Pebblesgrgrma wrote:Sorry to hear that. Thanks again for your support of me during my dads travels. I will be praying for you for comfort and peace.


Thank you pebbles, I will continue to keep you and your family in my prayers through your time of grief.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

User avatar
BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Bad news yesterday

Postby BeansMama » Sat Jan 14, 2017 8:10 am

Rob in PA wrote:Sorry to hear the news beans :( . Chemo was a bust for me too, butt I found a way to keep on ticking and I pray the same happens for you too. Damn this disease :evil:
Rob


Thanks Rob, I'm hoping the immunotherapy works, praying as hard as I can. I pray the same for you, that whatever treatments you try are successful as well. Never stop fighting this demon of a disease. I know I will for as long as I can. I want as many years with my loved ones as I can get.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

User avatar
Cowgirl918
Posts: 326
Joined: Sun Jan 17, 2016 12:55 am
Location: Indiana

Re: Bad news yesterday

Postby Cowgirl918 » Sat Jan 14, 2017 7:41 pm

Thanks for your note Beans! Love you too and I am glad you are resting. Other than a trip to IU for doctor, I have been doing the same. Sorry I am sick in the middle of our conversations but we will pick up where we left off.
Prayers and Angel dust coming your way!
HX Colon Polyps Villious and Tubillovillous
12/29/15 Colonoscopy/Endoscopy - Ascending Colon Mass- Hemicolectomy Scheduled
1/17/2016 Right Hemicolectomy Cancelled
1/25/2016 CT No evidence of other disease
2/12/2016 EMR-ascending colon mass 80%
8/12/2016 EMR #2 ascending colon mass curative
8/13/16 NED
7/26/2023 Neuroendocrine mass small bowel, two mesenteric lymph nodes
9/1/2023 Small bowel resection jejunum and lymph nodes removed mesentery

User avatar
BeansMama
Posts: 959
Joined: Thu Jan 28, 2016 1:38 am
Location: North Carolina

Re: Bad news yesterday

Postby BeansMama » Sun Jan 15, 2017 10:21 am

Cowgirl918 wrote:Thanks for your note Beans! Love you too and I am glad you are resting. Other than a trip to IU for doctor, I have been doing the same. Sorry I am sick in the middle of our conversations but we will pick up where we left off.
Prayers and Angel dust coming your way!


I am so sorry you still aren't feeling well cowgirl! I am glad you are resting, you need to in order to get better.

Love you my friend, sending extra prayers your way.
Beans
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016


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