KRAS Mutation- any one long term NED?

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rp1954
Posts: 1855
Joined: Mon Jun 13, 2011 1:13 am

Re: KRAS Mutation- any one long term NED?

Postby rp1954 » Sat Mar 24, 2018 8:26 am

Right at 8 years post dx, almost NED not much in the scans - stable, against all odds in conventional eyes. And even in my eyes, these last two years, skating on thin ice missing supplement schedules, similar misses that previously provoked long marker rises. High quality QOL, metronomic immunochemo for life.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

orlar
Posts: 65
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

Re: KRAS Mutation- any one long term NED?

Postby orlar » Sat Mar 24, 2018 7:13 pm

Sorry your treatment was delayed Brenda. I haven't been delayed as of yet, but was close a few times during FOLFOX. My next treatment is also scheduled on Wed. and my next scan is the day after yours (4/3). Here's hoping all goes as planned and the scans show a good response and/or stability.

Just an extra note. I was able to go snow skiing Thursday for the first time since I was diagnosed. I was only able to make 15-20 runs, but it was enjoyable beyond belief! It was truly the first time I didn't think about this disease for the better part of a day. To any of the new members reading, when that good week rolls around try to enjoy anything and everything you feel up to fitting in. No mater what stage you're at, that small dose of normalcy is wonderful!

Larry
56yo male DX 5/17, Right Hemi colectomy 6/17
Stage 3c 12 of 21 LN
7/17-12/17 Folfox(no Oxi round 9-12)
12/17 liver/lung mets-Stage 4 MSS KRAS G13D
2/18 liver doubled to 8.5cm+new met, lung mets to 1.4cm, multi peri/omen
2/18-7/18 Folfiri+Avastin(no 5FU after C2)
4/18 mets shrinking
7/18 liver/lung mets growing, Folfiri stopped
10/18 In Clinical Trial
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18-16.9, 4/18-9.0, 5/18-5.5, 6/18-6.9, 7/18-7.8, 9/18-56

Sharing Hope
Posts: 11
Joined: Wed Oct 25, 2017 5:02 am

Re: KRAS Mutation- any one long term NED?

Postby Sharing Hope » Sat Apr 28, 2018 3:17 pm

betsydoglover wrote:I'm KRAS mutant and have been in remission since 2009. See my signature - it is possible.


Hi betsydoglover—

Could you share what your specific KRAS mutation is? Also, is it MSS or MSI?

I’m happy to hear you’re in remission! Fantastic!

Thanks for the extra info!
Mama w/2 Sons/Smitten Wife since 1988; BD/1968; Lifelong vegetarian; Non-smoker/drinker
6/16 Baseline Colonoscopy; Sessile polyps - adenocarcinoma near Splenic Flexure; CEA .8
8/16 Robotic colon resection of Descending Colon; 30 LN clear; Stage 1
9/17 Liver tumor found/abdominal pain; CEA 16.4; Stage 4
9/17-11/17 5 TC FOLFOX/5FU + Avastin
11/17 CEA 6
MSS - KRAS G12V Mutation
12/17 Hepatic resection of left liver lobe/margins involved; current CEA .8
2/18 - 4/18
FOLFOX 5FU 6tx

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: KRAS Mutation- any one long term NED?

Postby NHMike » Sat Apr 28, 2018 3:19 pm

Cool that people are posting their mutations. Insurance usually doesn't cover the testing and I do hope that changes.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: KRAS Mutation- any one long term NED?

Postby LPL » Sat Apr 28, 2018 6:18 pm

Breararmstrong,
Thank you for posting this question.
My hubby (with a Kras mutation) is doing alright, as far as we know. Next checkup is in June.
All the best to you!
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

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

Re: KRAS Mutation- any one long term NED?

Postby dianetavegia » Fri May 04, 2018 4:14 pm

Sharing Hope wrote:
betsydoglover wrote:I'm KRAS mutant and have been in remission since 2009. See my signature - it is possible.


Hi betsydoglover—

Could you share what your specific KRAS mutation is? Also, is it MSS or MSI?

I’m happy to hear you’re in remission! Fantastic!

Thanks for the extra info!


Sharing Hope, 9 years ago they only tested for mutations if they were considering Erbitux. I was considered for a Stage III trial but was found to be KRAS Mutant. No MSI, etc., but all I know is KRAS Mutant. I had FOLFOX after my original surgery but NO CHEMO after my liver resection. Studies have not shown it to be necessary.

https://www.ncbi.nlm.nih.gov/pubmed/6893991
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

Sharing Hope
Posts: 11
Joined: Wed Oct 25, 2017 5:02 am

Re: KRAS Mutation- any one long term NED?

Postby Sharing Hope » Mon May 07, 2018 1:42 am

Thank you, Diane. “No MSI” means you don’t have this info or that your cancer biology was MSS? Thank you for the extra clarification. I could be reading this wrong, but it seems research tells us that MSI is more receptive to chemo treatment than MSS.
Mama w/2 Sons/Smitten Wife since 1988; BD/1968; Lifelong vegetarian; Non-smoker/drinker
6/16 Baseline Colonoscopy; Sessile polyps - adenocarcinoma near Splenic Flexure; CEA .8
8/16 Robotic colon resection of Descending Colon; 30 LN clear; Stage 1
9/17 Liver tumor found/abdominal pain; CEA 16.4; Stage 4
9/17-11/17 5 TC FOLFOX/5FU + Avastin
11/17 CEA 6
MSS - KRAS G12V Mutation
12/17 Hepatic resection of left liver lobe/margins involved; current CEA .8
2/18 - 4/18
FOLFOX 5FU 6tx


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