No more vectibix for me!

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

No more vectibix for me!

Postby BeansMama » Wed Oct 05, 2016 6:47 pm

Found out the oddest thing today when I went for my infusion.

Apparently my tumor pathology was redone by the pathologists at Levine when they received my tumor tissue.

They found I do in fact have a RAS mutation. It is not KRAS, my oncologist didn't say which exact one it was, just that it was a rare mutation that possibly was not tested for by my docs in Texas.

As a result the vectibix will not work. Kind of a bummer since the research I did on vectibix said it worked really well. I would have endured the rash for the tumor shrinking results.

My onc is also going to clarify the number of treatments my surgeon wants, he thinks they want too many and the surgery needs to be done sooner. So hopefully we will find out more after our next treatment. He is going to do the scan after the next round and we will see if we have any shrink of the large liver tumor.

Fingers crossed we get some good shrinkage!
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

Nik Colon

Re: No more vectibix for me!

Postby Nik Colon » Wed Oct 05, 2016 6:57 pm

Because these signals result in cell growth and division, overactive Ras signaling can ultimately lead to cancer.[1] The 3 Ras genes in humans (HRas, KRas, and NRas) are the most common oncogenes in human cancer; mutations that permanently activate Ras are found in 20% to 25% of all human tumors and up to 90% in certain types of cancer (e.g., pancreatic cancer).[2] For this reason, Ras inhibitors are being studied as a treatment for cancer and other diseases with Ras overexpression.

https://en.m.wikipedia.org/wiki/Ras_subfamily

The frequency and distribution of RAS gene mutations are not uniform1, 191. KRAS is the isoform most frequently mutated (in 86% of RAS-driven cancers), followed by NRAS (in 11% of RAS-driven cancers) and, infrequently, HRAS (in 3% of RAS-driven cancers)

In colon and rectal carcinoma (CRC), KRAS is also the predominantly mutated isoform (in 86% of CRC), whereas NRAS mutations are infrequent (in 14% of CRC) and HRAS mutations have not been detected.

http://www.nature.com/nrd/journal/v13/n ... 9_BX1.html
Last edited by Nik Colon on Wed Oct 05, 2016 7:08 pm, edited 2 times in total.

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mypinkheaven
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Re: No more vectibix for me!

Postby mypinkheaven » Wed Oct 05, 2016 6:58 pm

BeansMama wrote:My onc is also going to clarify the number of treatments my surgeon wants, he thinks they want too many and the surgery needs to be done sooner. So hopefully we will find out more after our next treatment. He is going to do the scan after the next round and we will see if we have any shrink of the large liver tumor.

Fingers crossed we get some good shrinkage!


Cripes! Well, no more rash for you - that's a good thing. I hope the Irinotecan is doing its work and shrinking that darn thing. I'm glad you'll be getting some information sooner than later!! Got my fingers crossed for you! :D
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

Tnguyen
Posts: 127
Joined: Wed Aug 24, 2016 6:47 pm
Facebook Username: Natalie Nguyen

Re: No more vectibix for me!

Postby Tnguyen » Wed Oct 05, 2016 7:03 pm

Sorry hear about that mamabeans
Sadly vectibix also stopped working for my mom and her tumors grew bigger. I also had big hopes for vectibix as I read it worked really well for other people. She only had like 4 infusion...sad. But I wish you the best and hopefully you'll be back on track with a new treatment!
Mom Diagnosed with CC stage iv with mets to liver and lung
16 rounds of folfox - failed
folfori- some growth, some shrank
folfori+vectibix- failed after 4 months (scans came back with some growth)
currently- (oct12/16) stivarga (2 pills a day)

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

Re: No more vectibix for me!

Postby BeansMama » Wed Oct 05, 2016 7:40 pm

mypinkheaven wrote:
BeansMama wrote:My onc is also going to clarify the number of treatments my surgeon wants, he thinks they want too many and the surgery needs to be done sooner. So hopefully we will find out more after our next treatment. He is going to do the scan after the next round and we will see if we have any shrink of the large liver tumor.

Fingers crossed we get some good shrinkage!


Cripes! Well, no more rash for you - that's a good thing. I hope the Irinotecan is doing its work and shrinking that darn thing. I'm glad you'll be getting some information sooner than later!! Got my fingers crossed for you! :D


I hope the irinotecan is doing its job too! Thank you for the finger crossing, I'm hoping the surgery happens sooner than originally thought.
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: No more vectibix for me!

Postby BeansMama » Wed Oct 05, 2016 7:44 pm

Nik Colon wrote:Because these signals result in cell growth and division, overactive Ras signaling can ultimately lead to cancer.[1] The 3 Ras genes in humans (HRas, KRas, and NRas) are the most common oncogenes in human cancer; mutations that permanently activate Ras are found in 20% to 25% of all human tumors and up to 90% in certain types of cancer (e.g., pancreatic cancer).[2] For this reason, Ras inhibitors are being studied as a treatment for cancer and other diseases with Ras overexpression.

https://en.m.wikipedia.org/wiki/Ras_subfamily

The frequency and distribution of RAS gene mutations are not uniform1, 191. KRAS is the isoform most frequently mutated (in 86% of RAS-driven cancers), followed by NRAS (in 11% of RAS-driven cancers) and, infrequently, HRAS (in 3% of RAS-driven cancers)

In colon and rectal carcinoma (CRC), KRAS is also the predominantly mutated isoform (in 86% of CRC), whereas NRAS mutations are infrequent (in 14% of CRC) and HRAS mutations have not been detected.

http://www.nature.com/nrd/journal/v13/n ... 9_BX1.html


Thank you for that information Nik!! I will have to ask my onc exactly which one I have the next time I see him. I was so exhausted from sleep issues I didn't even think of it when he told me. I have slept the last two days pretty much.

I'm thinking is is probably the NRAS since that is the infrequent one. Leave it to me to end up with all the uncommon things :D
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

MDK
Posts: 46
Joined: Sun Nov 29, 2015 1:43 pm

Re: No more vectibix for me!

Postby MDK » Wed Oct 05, 2016 7:46 pm

Hang tough Beans Mommy - we all have to!

Praying for you girl!

Marianne
Diagnosed 11/9/2015
Stage III Rectal Cancer
Began Chemoradiation 01/04/2016
Completed Chemoradiation 2/17/16
Local Excision
Developed Rectovaginal Fistula
06/24/16 APR / Flap Repair Fistula
Permanent Colostomy
09/20/2016 Liver Mets, possible Lung Mets
9/16 - 11/17 Xeloda and Avastin to progression
12/17 - 01/18 Folfox 6 sessions liver tumor shrank considerably - severe allergic reaction
01/18 - 04/18 Xeloda and Avastin - Progression
06/18 Avastin and Irinotecan

Philippians 4:6-7

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

Re: No more vectibix for me!

Postby BeansMama » Wed Oct 05, 2016 7:48 pm

Tnguyen wrote:Sorry hear about that mamabeans
Sadly vectibix also stopped working for my mom and her tumors grew bigger. I also had big hopes for vectibix as I read it worked really well for other people. She only had like 4 infusion...sad. But I wish you the best and hopefully you'll be back on track with a new treatment!


Thank you Tnuygen, sorry to hear the vectibix stopped working for your mom as well.

I had the same issue with Avastin when I was on Folfox, so no big surprise. I'm just hoping the irinotecan does its job and shrinks this tumor more.

I also wish the best to you and your mom. I will keep you both in my prayers.
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: No more vectibix for me!

Postby BeansMama » Wed Oct 05, 2016 7:50 pm

MDK wrote:Hang tough Beans Mommy - we all have to!

Praying for you girl!

Marianne


I am, and yes we do! We all have to keep fighting!

Thank you for the prayers, they are appreciated.
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

teri3
Posts: 405
Joined: Fri Jan 09, 2015 11:03 am

Re: No more vectibix for me!

Postby teri3 » Wed Oct 05, 2016 8:32 pm

Fingers crossed and prayers sent that the new treatment works. Hang in there.

Hugs,
Teri
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

fumaros
Posts: 273
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: No more vectibix for me!

Postby fumaros » Wed Oct 05, 2016 8:40 pm

I am hoping you get shrinkage and can have that surgery soon Beansmama. Stay fighting stay strong.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

Soccermom2boys
Posts: 222
Joined: Tue Nov 10, 2015 10:29 pm

Re: No more vectibix for me!

Postby Soccermom2boys » Wed Oct 05, 2016 8:53 pm

BeansMama wrote: Leave it to me to end up with all the uncommon things :D


It sure does feel like that doesn't it?! Like seriously, where are these kinds of odds when winning the Mega Millions lottery?! Oh Beans--you just like to keep us intrigued on here! You are always in my thoughts--when you kick this tumor and any lingering cancer cells to the curb life will be blissfully uneventful, that is what I hope for you! :)

Bummer about the vectibix not working for your picky cancer cells, but yay for no more rash! Keep on sharing any updates!
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

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

Re: No more vectibix for me!

Postby BeansMama » Wed Oct 05, 2016 9:19 pm

Soccermom2boys wrote:
BeansMama wrote: Leave it to me to end up with all the uncommon things :D


It sure does feel like that doesn't it?! Like seriously, where are these kinds of odds when winning the Mega Millions lottery?! Oh Beans--you just like to keep us intrigued on here! You are always in my thoughts--when you kick this tumor and any lingering cancer cells to the curb life will be blissfully uneventful, that is what I hope for you! :)

Bummer about the vectibix not working for your picky cancer cells, but yay for no more rash! Keep on sharing any updates!


I definitely think I am a fan of the oddities when it comes to this disease, I wish I had that kind of luck playing the lottery!!

Hoping to kick this disease to the curb! Still fighting for NED. I will keep the updates coming :D
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: No more vectibix for me!

Postby BeansMama » Wed Oct 05, 2016 9:20 pm

fumaros wrote:I am hoping you get shrinkage and can have that surgery soon Beansmama. Stay fighting stay strong.


Thank you! I hope the surgery comes sooner! I have no plan to stop fighting at all.
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: No more vectibix for me!

Postby BeansMama » Wed Oct 05, 2016 9:21 pm

teri3 wrote:Fingers crossed and prayers sent that the new treatment works. Hang in there.

Hugs,
Teri


Thank you!
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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