Celebrating 10 years since my Stage IV DX!!!!!

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Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Celebrating 10 years since my Stage IV DX!!!!!

Postby Rikimaroo » Sun May 31, 2020 1:20 pm

My onc suggested Folfiri/Avastin to start back up now, and then maybe down the road to switch to Xeloda. How long did it take before your Onc switched you to Xeloda? Xeloda is easier for me, hate taking pump home/IRInotecan. Were you on Folfiri/Avastin for a little then switched to Xeloda per your onc or your request?

Thank you for replying.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

Alex83
Posts: 15
Joined: Sun May 31, 2020 4:39 pm

Re: Celebrating 10 years since my Stage IV DX!!!!!

Postby Alex83 » Sun May 31, 2020 5:32 pm

Awesome, happy to hear that.
thank you for sharing the hope
Supporting my mom
November 2017, Colon re-suction adenocarcinoma Moderately differentiated (3 lymph nodes active)
October 2018, CT scan showed nodules in lung and liver
Starts chemo (Oxalaplatin and Avastin) + Xeloda
January 2020 all nodules gone.
May 2020, again nodules in Lung
June 2020, starts new protocol (Folfiri and Zaltrap)
Kras mutated g12c
MSI negative

Mattie
Posts: 76
Joined: Fri Mar 07, 2014 1:06 am

Re: Celebrating 10 years since my Stage IV DX!!!!!

Postby Mattie » Mon Jun 01, 2020 8:33 pm

I did the Folfox/Avastin only when I was first diagnosed---I think about six months, then went to Xeloda right after.

Agree that Xeloda much easier, and I believe it is exactly the same as 5FU. I always ask my onc what he would do if he were me. I'd did ask to drop the xeloda after over a year of NED. He supported it. I've asked to drop Avastin, but he doesn't think it's a good idea. ...ultimately, I always go with what he says.

Be well.

.
Rikimaroo wrote:My onc suggested Folfiri/Avastin to start back up now, and then maybe down the road to switch to Xeloda. How long did it take before your Onc switched you to Xeloda? Xeloda is easier for me, hate taking pump home/IRInotecan. Were you on Folfiri/Avastin for a little then switched to Xeloda per your onc or your request?

Thank you for replying.
4/10 debulk surgery, DX stage IVb, 49yo
5/10-11/11 Folfox, then Xeloda/Avastin
4/13 Resect liver met + pelvic node, 20+ Rad treatments
7/14 SBRT 15 mm Liver & node
12/14 SBRT 8 mm Liver met
3/16 4-5 pelvic nodes, Xeloda/Avastin again
12/16 NED, maintaining Xeloda/Avastin
8/17 NED Dropping Xeloda. Avastin only.
3/21 NED Avastin only
10/21 Pausing Avastin Proteinuria/BP complications
12/21 Resect 4.4 x 3.6 cm lower abdominal met

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Celebrating 10 years since my Stage IV DX!!!!!

Postby Rikimaroo » Tue Jun 02, 2020 9:19 am

Mattie thanks for the reply.

Does your cancer have any mutations? I have NRAS Mutation.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

Mattie
Posts: 76
Joined: Fri Mar 07, 2014 1:06 am

Re: Celebrating 10 years since my Stage IV DX!!!!!

Postby Mattie » Mon Jun 08, 2020 7:38 am

Rikimaroo wrote:Mattie thanks for the reply.

Does your cancer have any mutations? I have NRAS Mutation.


I am KRAS-wild type and I'm the MSS type that is not great for immuno.

Best,
4/10 debulk surgery, DX stage IVb, 49yo
5/10-11/11 Folfox, then Xeloda/Avastin
4/13 Resect liver met + pelvic node, 20+ Rad treatments
7/14 SBRT 15 mm Liver & node
12/14 SBRT 8 mm Liver met
3/16 4-5 pelvic nodes, Xeloda/Avastin again
12/16 NED, maintaining Xeloda/Avastin
8/17 NED Dropping Xeloda. Avastin only.
3/21 NED Avastin only
10/21 Pausing Avastin Proteinuria/BP complications
12/21 Resect 4.4 x 3.6 cm lower abdominal met

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Celebrating 10 years since my Stage IV DX!!!!!

Postby Rikimaroo » Mon Jun 08, 2020 3:29 pm

Mattie,

It seems our situation is so similar. My notes show:

tumor evaluation, showed NRAS mutation, K-ras, BRAF wild type. Microsatellite stable (MSS).

Your posts really gives me encouragement. I really hope I can keep this Pelvic Tumor down and something comes out to cure cancer for us all!!

Best - Riki
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

Koreysue
Posts: 258
Joined: Mon Apr 30, 2018 2:36 pm

Re: Celebrating 10 years since my Stage IV DX!!!!!

Postby Koreysue » Wed Jun 17, 2020 12:28 am

What a happy post, full of hope. So happy for you!
Dx: 6/2017 stage 3 CC
Sigmoid, 2 nodes
CEA at dx: 6.1
Sigmoid Colectomy/folfox (last chemo (1/31/18)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/18 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/19 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 12/1/20 CEA: 3.5
CEA 5/21 4.2
CEA 10/21 3.4
colonoscopy 10/21 10mm polyp
CEA 4/22 3.7
CEA 7/22 3.8
CEA 12/22 4
CEA 1/22 3.2 and NED 5yr scan

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Celebrating 10 years since my Stage IV DX!!!!!

Postby Rikimaroo » Mon Aug 03, 2020 11:26 am

Hi Mattie,

Switching to Xeloda/Avastin on 8/19 since things are looking good so far. Did you have any side affects with Avastin? I don't think I had any, maybe a little woozy initially but then gone. Nothing like Folfiri of course.

Riki
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

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cecioboe
Posts: 597
Joined: Mon Oct 17, 2011 9:08 pm
Facebook Username: Ceci Lagarenne (Higgins)
Location: Texas

Re: Celebrating 10 years since my Stage IV DX!!!!!

Postby cecioboe » Thu Aug 20, 2020 10:44 pm

That is fabulous!! Keep on truckin'!
Wife to Jim Stage IV RC w/liver mets
DX 9/16/11
T3N1M1
Oct - Dec 2011 chemo/rad
1/04/12 ileo
1/16/12 LAR, liver resection
2/29/12 blockage, emer surg, ileo rev
4/16/12- 9/16/12 chemo
NED since 10/22/12
De-ported 6/24/16

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dianetavegia
Posts: 2731
Joined: Sat May 16, 2009 8:47 pm
Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia

Re: Celebrating 10 years since my Stage IV DX!!!!!

Postby dianetavegia » Sat Aug 29, 2020 8:11 am

Wonderful news! I'm so happy for you!!
Diane
Stage III cc surgery 1/7/09. 12 tx FOLFOX
Stage IV PET = 1.5cm liver met. HR 4/11/12

14 years since dx and 11 years post liver resection.
Pronounced CURED and discharged by onc

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2


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