KRAS Mutation- any one long term NED?

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Brearmstrong
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Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

KRAS Mutation- any one long term NED?

Postby Brearmstrong » Wed Mar 14, 2018 8:35 am

I have been searching the archives for talk about KRAS mutations. I'm feeling a little hopeless that I'm doomed because of no immunotheraphy options. If folfori fails then I'm out of options except clinical trials. Has anyone here achieved long term NED with a KRAS mutation? Thanks in advance!

-Brenda
45 F Jan 17 after appendectomy
DX: (CC) tumor started in appendix and through colon wall
Adenocarcinoma w/ mucinous features 4.1cm
mod diff G2 T4aN2
Stage IIIC
nodes 8/50
CEA 4.6 after surgery < .05
margins clear
KRAS G12D
FOLFOX Apr-sep 17
Clean CT scan Jul 2017 watching one small lung nodule 4mm, clean CT oct 17, CEA 3.4, nov 17 CEA 8.1.
Oct 2017 clean CT 4mm lung nodule stable, new 2 mm nodule.
Nov 17 PET para aortic nodes uptake. Stage IV
Folfori w/avastin Dec 17 CEA 7.1

Mercy110
Posts: 93
Joined: Wed Aug 16, 2017 12:13 am

Re: KRAS Mutation- any one long term NED?

Postby Mercy110 » Wed Mar 14, 2018 9:57 am

Hi Brenda.

My mum is not NED as she has multiple lung nodules that are inoperable. She is a NRAS mutant. Our onco also told us that there are no more drugs to use after folfiri, which made us very worried as well. I wonder how you know that you are not suitable with Keytruda as its result seems promising. How is your experience with folfiri?

I am sorry that I have no concrete advice to offer. Hope you are doing well with the drug and I will pray for you.

Mercy
Daughter of Mum age 56, NRAS-mutate Q61R
2017-05: Surgery done. Temporary stoma. T4N1M0. Stage3C. Xeloda No Radio. CEA: 7.3
2017-08: CEA: 8.0 (1st) CEA: 9.8 (2nd) CT Scan: Multiple lung nodules. Stage4.
2017-09: Chemo - FOLFOX + Avastin, 85% for serious diarrhea CEA: 7.0, 4.7 (10/10), 3.7 (11/10), 2.9 (12/3), 2.2 (12/21), 2.4 (01/09), 3.4 (2/24), 2.6 (3/9)
2017-11: Stable Multiple Lung Nodules from CT
2018-03: Folfox Allergy, 2 months chemo break

WISH ALL MIGHTY GOD HEALS MUM WITH HIS MIRACLE

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betsydoglover
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Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: KRAS Mutation- any one long term NED?

Postby betsydoglover » Wed Mar 14, 2018 11:10 am

I'm KRAS mutant and have been in remission since 2009. See my signature - it is possible.
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 11/17

Brearmstrong
Posts: 49
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: KRAS Mutation- any one long term NED?

Postby Brearmstrong » Wed Mar 14, 2018 12:34 pm

Thank you Betsy, exactly what I needed to hear today. Thank you so much for posting and I wish you forever NED!!!

-Brenda
45 F Jan 17 after appendectomy
DX: (CC) tumor started in appendix and through colon wall
Adenocarcinoma w/ mucinous features 4.1cm
mod diff G2 T4aN2
Stage IIIC
nodes 8/50
CEA 4.6 after surgery < .05
margins clear
KRAS G12D
FOLFOX Apr-sep 17
Clean CT scan Jul 2017 watching one small lung nodule 4mm, clean CT oct 17, CEA 3.4, nov 17 CEA 8.1.
Oct 2017 clean CT 4mm lung nodule stable, new 2 mm nodule.
Nov 17 PET para aortic nodes uptake. Stage IV
Folfori w/avastin Dec 17 CEA 7.1

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Jack&KatiesMommy
Posts: 495
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: KRAS Mutation- any one long term NED?

Postby Jack&KatiesMommy » Wed Mar 14, 2018 3:36 pm

I am not NED now...but I am inching toward 7 years since my diagnosis. My children were 4 and 8 when I was diagnosed and they are 11 and 15 now. We just keep going at this cancer in as many different ways as we can. (See my signature.) I am KRAS mutant and MSS.

Hang in there!
Cynthia
Mommy to Jack (8) now (15) and Katie (4) now (11)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection!
8/13; 10/13; 12/13; 3/14; 8/14; 11/14; 2/15; 7/15; 12/15 RFA lungs
5/17: Upper Left Lobe of lung removed in order to resect lymph nodes.
02/18: 3 new metastatic lymph nodes in hilar/lung: Back on Irinotecan
Praying for more time with my children.....

orlar
Posts: 46
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

Re: KRAS Mutation- any one long term NED?

Postby orlar » Wed Mar 14, 2018 8:15 pm

Hi All, I needed a little boost today as it was my 3rd round FOLFIRI + Avastin and will be scheduling a scan after the 4th round to see if it made a difference. I know it won't be NED, but maybe, just maybe, a first step in that direction. I asked my ONC before starting the current regiment about the good, bad and ugly on timelines. I don't know if most patients ask or not. I wanted to know so I could make the best decisions when the I get that news in a few weeks (good or ugly). Thus far my cancer is being described as aggressive, unresponsive and not typical. As I have not had good news from a scan yet, I too think about what options remain, such as clinical trials. It's so good to know though that a KRAS MSS patient can get to long term NED. I'm a glass half full kind, so hopefully we all will get to/remain NED. Thanks for letting me tag in and get a needed pep talk!
Larry
56yo male DX 5/15/17 Right Hemi colectomy (cecum) 6/17
mod diff. adenocarcinoma 5.8 x 3.9 x .7cm
3c (T3 N2b M0) 12 of 21 pos
Folfox 7/17-12/17 (no Oxi round 9-12)
12/17 CT=liver/lung mets-Folfox failed Stage 4
MSS KRAS G13D mut.
2/18 PET=more disease, liver doubled to 8.5cm +new lesion, lung mets 1.4cm, multi peri./omen. implants
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18 16.9
2/18 Folfiri + Avastin (no 5FU after C2)
4/18 PET=liver/lung/implants all shrinking and uptake greatly reduced

Brearmstrong
Posts: 49
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: KRAS Mutation- any one long term NED?

Postby Brearmstrong » Thu Mar 15, 2018 6:37 am

Larry, we seem to have similar signatures. You can get to NED! I just know it. I just had my 7th round of folfori and avastin. After three rounds, I had a CT scan and showed no shrinkage of my enlarged lymph nodes but didn't show growth either. We can get through this, I'm just very nervous that if folfori fails than there are no more chemo options and my oncologist said no proven immunotheraphy that works for KRAS mutations. That is scary but let's hope it doesn't come to that. I abhor chemo but it's all we got.

-Brenda
45 F Jan 17 after appendectomy
DX: (CC) tumor started in appendix and through colon wall
Adenocarcinoma w/ mucinous features 4.1cm
mod diff G2 T4aN2
Stage IIIC
nodes 8/50
CEA 4.6 after surgery < .05
margins clear
KRAS G12D
FOLFOX Apr-sep 17
Clean CT scan Jul 2017 watching one small lung nodule 4mm, clean CT oct 17, CEA 3.4, nov 17 CEA 8.1.
Oct 2017 clean CT 4mm lung nodule stable, new 2 mm nodule.
Nov 17 PET para aortic nodes uptake. Stage IV
Folfori w/avastin Dec 17 CEA 7.1

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mypinkheaven
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Facebook Username: Sally Cunningham
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Re: KRAS Mutation- any one long term NED?

Postby mypinkheaven » Thu Mar 15, 2018 12:22 pm

Mercy110 wrote:My mum is not NED as she has multiple lung nodules that are inoperable. She is a NRAS mutant. Our onco also told us that there are no more drugs to use after folfiri, which made us very worried as well.
Mercy


I'm also NRAS mutated. After Folfox and Folfiri failed, I was put on 5FU + Erbitux before a gene test results came back. According to the results, Erbitux shouldn't work for me, but my multiple lung mets have been stable for over 7 months.

Ablation and radiation are other options to treat lung mets. I'm keeping proton radiation therapy in mind if any of my nodules grow too big. My oncologist stays very up-to-date and is always thinking of future treatments. He's my 5th oncologist. The other 4 seemed to automatically give up on me. So, a 2nd or 3rd opinion would be a good idea for your mom.

Best wishes,
Sally
MSS, KRAS Wild NRAS Mutated
9/2012 Colon Cancer 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 less than 5 mm.
8/16 CT Nodules still present. Most stable. Some growth
10/16 CT Same ^. Onc recommends no tx :evil:
11/16 Transfer to UCSD Moores Cancer Center
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus

NHMike
Posts: 1096
Joined: Fri Jul 21, 2017 3:43 am

Re: KRAS Mutation- any one long term NED?

Postby NHMike » Fri Mar 16, 2018 10:43 am

I have (or maybe had) KRAS G12D, same as you. It is the most common CRC gene mutation so you have lots of company. The thing is that Genomic Tumor pathology is not standard of care so most people don't know their gene mutation. I asked my Oncologist for testing and he brushed me off. My son's manager offered to do it for me so I gave them permission to request the biopsy and he did it for me (he's a cancer pathologist with a lot of patents in his field).

KRAS G12D isn't one of the really aggressive types (like BRAF V600E or KRAS G12V) but I'm sure that it's small consolation given that you're stage 4. There is an Immunotherapy Trial at the National Cancer Institute in Baltimore for KRAS G12D if you have the HLA-C 08*02 Allele (fairly rare). Theoretically the HLA-A 11*01 Allele will work as well but I don't if there's a trial for that. HLA-A 11*01 is in about 35% of East Asians. There is a forum thread on this at viewtopic.php?f=1&t=49736 with the base patient and her husband posting about it and others going through it posting as well.

Here's the NCI trial page. You can get more detailed information from the other thread where there are people that are going through it or have gone through it. It's the future of cancer treatment - getting your own immune system to kill the tumor cells without hitting the rest of your body.

https://ccr.cancer.gov/sb-faqs
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

rp1954
Posts: 1285
Joined: Mon Jun 13, 2011 1:13 am

Re: KRAS Mutation- any one long term NED?

Postby rp1954 » Sun Mar 18, 2018 1:40 pm

Brearmstrong wrote:I have been searching the archives for talk about KRAS mutations. I'm feeling a little hopeless that I'm doomed because of no immunotheraphy options. If folfori fails then I'm out of options except clinical trials. Has anyone here achieved long term NED with a KRAS mutation


Of course, there are immunotherapy and molecular medical options. They just aren't well supported, well read, or even vaguely perceived by many "regular oncologists". Rather they are unwanted orphans of generic medicines and nutraceuticals, residents of highly under utilized medical literature and research. I've discussed some aspects of these possibilities in my posts; they have pretty much worked like a cookbook for us. A cookbook with scattered pages and unfamiliar dishes. With para-aortic LN, one is probably looking to stop seeding, transitions and growth spurts of micromets, perhaps a lymphadenectomy, with some kind of remission between NED and a high quality stable. My personal opinion is that a good selection will produce far longer and broader eras of higher quality, just almost everyone quits long before they even realistically start, if they do anything at all in the integrative/CAM/experimental world.

Without a serious start with some hard nosed advocacy and DIY, we would have been finished long ago.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

Brearmstrong
Posts: 49
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: KRAS Mutation- any one long term NED?

Postby Brearmstrong » Mon Mar 19, 2018 6:55 am

Thank you everyone. Mike, your post gave me hope and that's all most of us are looking for! I appreciate you sending me the trial information. I meet with my oncologist this Wednesday and my plan is to ask if we can do the surgery now rather than after 12 round of folfori w/ avastin. I think 8 is more than sufficient and I'm afraid that it will spread after 12 rounds and then surgery is off the table. Just so frustrating sometimes... I'll keep you posted if I was successful in changing his mind.

-Brenda
45 F Jan 17 after appendectomy
DX: (CC) tumor started in appendix and through colon wall
Adenocarcinoma w/ mucinous features 4.1cm
mod diff G2 T4aN2
Stage IIIC
nodes 8/50
CEA 4.6 after surgery < .05
margins clear
KRAS G12D
FOLFOX Apr-sep 17
Clean CT scan Jul 2017 watching one small lung nodule 4mm, clean CT oct 17, CEA 3.4, nov 17 CEA 8.1.
Oct 2017 clean CT 4mm lung nodule stable, new 2 mm nodule.
Nov 17 PET para aortic nodes uptake. Stage IV
Folfori w/avastin Dec 17 CEA 7.1

orlar
Posts: 46
Joined: Fri Jul 21, 2017 12:51 am
Location: oregon

Re: KRAS Mutation- any one long term NED?

Postby orlar » Mon Mar 19, 2018 9:02 pm

Hi Brenda, I wonder about the same issues of waiting too long "IF" surgery becomes an option. I know we need the wait time after chemo + Avastin, but we never know how long the regimen is going to be effective in the first place. Some members seem to have a good response for a long time, others not so long. Do we wait until tests show things going sideways or try to charge ahead at the first available opportunity? Tough questions that will probably vary on who you are speaking with. I don't have the answers, but plan on asking for more than 1 opinion. I'll be curious what your ONC has to say. Take care!
Larry
56yo male DX 5/15/17 Right Hemi colectomy (cecum) 6/17
mod diff. adenocarcinoma 5.8 x 3.9 x .7cm
3c (T3 N2b M0) 12 of 21 pos
Folfox 7/17-12/17 (no Oxi round 9-12)
12/17 CT=liver/lung mets-Folfox failed Stage 4
MSS KRAS G13D mut.
2/18 PET=more disease, liver doubled to 8.5cm +new lesion, lung mets 1.4cm, multi peri./omen. implants
CEA 5/17-16.2, 12/17-16.1, 02/18-43.0, 3/18 16.9
2/18 Folfiri + Avastin (no 5FU after C2)
4/18 PET=liver/lung/implants all shrinking and uptake greatly reduced

NHMike
Posts: 1096
Joined: Fri Jul 21, 2017 3:43 am

Re: KRAS Mutation- any one long term NED?

Postby NHMike » Thu Mar 22, 2018 9:56 pm

The wait time until surgery bugged me as well but I had radiation + chemo and the radiation continues to work well after you stop. I felt fine after two weeks but they wanted to do the MRI a month after the end of radiation and chemo and that may be some of the reasons why they wanted to wait six weeks for the surgery. I also think that it takes longer to recover from Oxaliplatin (I didn't have it on the Neo-Adjuvant chemo).
6/23/17: ER rectal bleeding; Colonoscopy
7/13: Stage 3B rectal. T3N1bM0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/30: LAR, Temp Ileostomy, Path Complete Response
12/20: Started CapeOx

Brearmstrong
Posts: 49
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: KRAS Mutation- any one long term NED?

Postby Brearmstrong » Fri Mar 23, 2018 6:52 am

Thanks again to all that post here. So my oncologist agreed with me to do the surgery after my 8th round which was scheduled for this past Wednesday. That was all great until the bloodwork came back and my white blood cells tanked again even with Nuelasta shots after each disconnect from the pump. That then threw off the time line. So, having 8th round next Wednesday (hopefully) and then CT scan on April 2nd to see if nodes are still stable and if yes, we will move up the surgery, take me off avastin for 6 weeks and chemo for 3. This is where I'm nervous because my cancer came roaring back only 3 weeks after I finished 12 rounds of Folfox. My oncologist said that it will just come back in other distant nodes so this will not cure me. I get the feeling that he feels this surgery is a total waste of time. I just hate this cancer. On the upside, I can eat and taste food for 7 whole days and I feel normal again. I need to pack on as many pounds as I can in one week ;-)

-Brenda
45 F Jan 17 after appendectomy
DX: (CC) tumor started in appendix and through colon wall
Adenocarcinoma w/ mucinous features 4.1cm
mod diff G2 T4aN2
Stage IIIC
nodes 8/50
CEA 4.6 after surgery < .05
margins clear
KRAS G12D
FOLFOX Apr-sep 17
Clean CT scan Jul 2017 watching one small lung nodule 4mm, clean CT oct 17, CEA 3.4, nov 17 CEA 8.1.
Oct 2017 clean CT 4mm lung nodule stable, new 2 mm nodule.
Nov 17 PET para aortic nodes uptake. Stage IV
Folfori w/avastin Dec 17 CEA 7.1

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dianetavegia
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Re: KRAS Mutation- any one long term NED?

Postby dianetavegia » Fri Mar 23, 2018 10:28 am

There are several thoughts on KRAS mutations. One is that it causes cell apoptosis, which means faulty cells commit suicide before they can clump together and cause new tumors.

I was NED from 2009 (Stage III with resection and 12 tx FOLFOX) to 2012 when I had a tiny liver met (removed with no chemo follow up). I've been NED for the last 6 years, tho my CEA was 5.8 six months ago. It has always remained between 2.7 and 3.7 except when I had pneumonia. That was also when they found I am hypothyroid and all scans were clear. Hypothyroidism causes elevated CEA so I'm praying I'm still all clear. I have blood work and scans over the next 2 weeks.

So, the answer to your question is 'I have had 8 great years out of 9' and am now 67.
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. CEA 6.4 PET = 1.5cm liver met. HR 4/11/12 No chemo

Nine years 3 months since my original dx and Six years post liver resection.
NED April 2018!
“O Lord my God, I cried out to You, And You healed me.”
Psalms 30:2


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