Anyone with Kras G12V or G12D, NIH trial needs you

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DH2Sleen
Posts: 80
Joined: Thu Jan 29, 2015 10:10 am

Re: Anyone with Kras G12V or G12D, NIH trial needs you

Postby DH2Sleen » Thu Aug 23, 2018 10:31 am

[quote="NHMike]I will think about it after I survive reversal. I'm not in any kind of shape for traveling these days.

The reason I ask about C*08:02 is that the odds for A*11:01 are not that good in general but C*08:02 is around 30% for Asians.[/quote]
Well according to Dr. Yang, A*11:01 has a 50% probability for Chinese. I think the odds are pretty high for all Asians. It is the mixed population in the US that is 1 in 7.
DW, Sleen dx 9/2013 @47yo: IIIc T4b N2b MX
09/2013 colectomy
10/2013 - 3/2014 FOLFOX
04/2014 - 6/2014 Rad to bladder
12/2014 +'ve for lung mets, MX becomes M1
03/2015 enter TIL trial @ NIH
07/01/15 Receive 148E9 cells to target K-ras G12D mutation
08/11/15 Reduction=18%, no new tumors
09/15/15 25%
10/20/15 27%; PET -> one hot met
11/24/15 30% all mets shrinking
01/26/16 46% but one suspicious met
03/24/16 46% but one growing
04/07/16 Lung lobectomy NED for the first time

NHMike
Posts: 2302
Joined: Fri Jul 21, 2017 3:43 am

Re: Anyone with Kras G12V or G12D, NIH trial needs you

Postby NHMike » Thu Aug 23, 2018 10:37 am

DH2Sleen wrote:[quote="NHMike]I will think about it after I survive reversal. I'm not in any kind of shape for traveling these days.

The reason I ask about C*08:02 is that the odds for A*11:01 are not that good in general but C*08:02 is around 30% for Asians.[/quote]
Well according to Dr. Yang, A*11:01 has a 50% probability for Chinese. I think the odds are pretty high for all Asians. It is the mixed population in the US that is 1 in 7.[/quote]


Oops, I got them backwards.

I'm using this site: http://igdawg.org/software/browser-beta.html to show allele frequencies which is where I got my 30% number.

C*08:02 has some benefit for Africans but it's single digits.
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

emzee
Posts: 5
Joined: Wed Jun 08, 2011 3:49 pm

Re: Anyone with Kras G12V or G12D, NIH trial needs you

Postby emzee » Thu Aug 30, 2018 4:33 pm

Hi there, I am a frequent "viewer" rather than poster here and I also follow Colontown groups on FB but am not a FB person either so there's that. I am so jacked up about this thread. I see my care team at Northwestern in Chicago tomorrow and will be strongly advocating for their assistance in helping to determine if I'm a good fit for this particular trial at NIH. Based on my knowledge and Foundation One report I've finally got all the right moving parts to qualify (or so it would seem). I've had a particularly grueling summer. Vascular surgery to move two tumors blocking the IVC and renal artery plus as failed immunotherapy attempt using atezolizumab and cobimetinib. It was pretty horrendous to get approval from insurance and that was before I went on LTD, so also walked away from a 30 year career, sixteen of those at my local community hospital that I loved. Thanks, Cancer!

So, because I remain hopeful and want to try whatever I can to slay this belly of the beast I am a nervous wreck waiting for my appointment tomorrow to see what the team says. My oncologist is an active bench researcher so I feel good about his thoughts on this.

As for my failed immuno experience this summer, it was his idea to try it based on a clinical trial that concluded last year. It is an approved therapy for melanoma patients. I got sicker from this treatment then just about anything I have tried and I've done it all except Lonsurf which is going to remain off the table for now. The team does not think I'll get much if any benefit from it. The nausea, vomiting and diarrhea was excruciating and they don't have a formal database of side effects as so few people for CRC have actually been on the regimen (that's was what I was told). I still have massive internal inflammation and have been on a strong course of steroids to calm the bowels down and last infusion and oral meds were back in early July. I think immunotherapy gets a lot of positives and it certainly makes a great deal of sense but my care team told me that there was a good chance it would be pretty toxic for me and it was. We had hope for this but it wasn't meant to be.

OK, so I hope to report back that there's some forward progress on connecting with NIH.

I just want to add a "2 cents" to the thread about the dumbass things people say to cancer patients from another thread. This is a personal favorite. During one of my many treatment cycles (sorry after 8 years I forget which one) my very own brother who refuses to get a screening colonoscopy said this to me after we saw a nice drop in CEA and a lymph node resolve: "See, good things can happen to good people." Right, so I have cancer because I'm nice? It never ends people, it never ends.

Ciao for now and hope this sun is shining in your neck of the woods!
--Emzee
Dx Nov'10 Stage III rectal CA
Dec'10-11 F5U & 25 rad Txs
Mar'11 res,temp ostomy,pos nodes
Mar'11-Nov '11 FOLFOX 12 Txs
Feb'12 CEA elev;liver tum,Stage IV
Mar'12 Liver res, gallbladder out,ostomy rev
Feb'14 Elev CEA Pos para-aortic lymph nodes
May '14-Aug'14 FOLFIRI + Avastin (6 rnds, red. dose)
Sept-Oct '14 SBRT nodes
Sept'15 CEA elev,new PALN pos
Oct-Nov '15 SBRT nodes
Feb '16 CEA elev,new PALN pos
Apr-May Red dose Stivarga
Oct '16 CEA elev,new PALN pos
'18 mult sm lung mets, PALNs; CEA UP, maint. 5FU

NHMike
Posts: 2302
Joined: Fri Jul 21, 2017 3:43 am

Re: Anyone with Kras G12V or G12D, NIH trial needs you

Postby NHMike » Thu Aug 30, 2018 9:41 pm

emzee wrote:Hi there, I am a frequent "viewer" rather than poster here and I also follow Colontown groups on FB but am not a FB person either so there's that. I am so jacked up about this thread. I see my care team at Northwestern in Chicago tomorrow and will be strongly advocating for their assistance in helping to determine if I'm a good fit for this particular trial at NIH. Based on my knowledge and Foundation One report I've finally got all the right moving parts to qualify (or so it would seem). I've had a particularly grueling summer. Vascular surgery to move two tumors blocking the IVC and renal artery plus as failed immunotherapy attempt using atezolizumab and cobimetinib. It was pretty horrendous to get approval from insurance and that was before I went on LTD, so also walked away from a 30 year career, sixteen of those at my local community hospital that I loved. Thanks, Cancer!

So, because I remain hopeful and want to try whatever I can to slay this belly of the beast I am a nervous wreck waiting for my appointment tomorrow to see what the team says. My oncologist is an active bench researcher so I feel good about his thoughts on this.

As for my failed immuno experience this summer, it was his idea to try it based on a clinical trial that concluded last year. It is an approved therapy for melanoma patients. I got sicker from this treatment then just about anything I have tried and I've done it all except Lonsurf which is going to remain off the table for now. The team does not think I'll get much if any benefit from it. The nausea, vomiting and diarrhea was excruciating and they don't have a formal database of side effects as so few people for CRC have actually been on the regimen (that's was what I was told). I still have massive internal inflammation and have been on a strong course of steroids to calm the bowels down and last infusion and oral meds were back in early July. I think immunotherapy gets a lot of positives and it certainly makes a great deal of sense but my care team told me that there was a good chance it would be pretty toxic for me and it was. We had hope for this but it wasn't meant to be.

OK, so I hope to report back that there's some forward progress on connecting with NIH.

I just want to add a "2 cents" to the thread about the dumbass things people say to cancer patients from another thread. This is a personal favorite. During one of my many treatment cycles (sorry after 8 years I forget which one) my very own brother who refuses to get a screening colonoscopy said this to me after we saw a nice drop in CEA and a lymph node resolve: "See, good things can happen to good people." Right, so I have cancer because I'm nice? It never ends people, it never ends.

Ciao for now and hope this sun is shining in your neck of the woods!
--Emzee


Best of luck with the NCI trial. I see that you've been through the CRC ringer over the years.
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

formywife
Posts: 1
Joined: Mon Aug 27, 2018 11:23 pm
Facebook Username: hieubeo

Re: Anyone with Kras G12V or G12D, NIH trial needs you

Postby formywife » Fri Aug 31, 2018 10:04 pm

Hi i'd like to take the trial. Im a colon cancer patient with Kras G12V AND G12D

Peridot1
Posts: 5
Joined: Sat Aug 10, 2019 9:14 am

Re: Anyone with Kras G12V or G12D, NIH trial needs you

Postby Peridot1 » Wed Nov 06, 2019 6:22 pm

Is this trial still ongoing? any more info to share? How to contact the research institution, sponsor, etc.? I'm G12D.

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CRguy
Posts: 10019
Joined: Sun Feb 10, 2008 6:00 pm

Re: Anyone with Kras G12V or G12D, NIH trial needs you

Postby CRguy » Wed Nov 06, 2019 6:27 pm

Please check the info and link in the first post of this topic.

viewtopic.php?f=1&t=60699#p480660

Best wishes
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Jacques
Posts: 534
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: Anyone with Kras G12V or G12D, NIH trial needs you

Postby Jacques » Thu Nov 07, 2019 12:32 am

The direct link to the trial is here:

https://clinicaltrials.gov/ct2/show/NCT03190941

They are still recruiting in Bethesda, Maryland. The contact information is here:

https://clinicaltrials.gov/ct2/show/NCT03190941#contacts

sdino
Posts: 72
Joined: Tue Mar 28, 2017 5:32 pm

Re: Anyone with Kras G12V or G12D, NIH trial needs you

Postby sdino » Fri Nov 08, 2019 3:12 pm

At NIH - For KRAS G12D that expresses ◦HLA-A*11:01 positive. Clinical Trial NCT03745326. Dr Yang is a brilliant Doctor.
Caregiver for Wife 54 yrs old
DX:11/16-CC sigmoid colon
Lung Mets: Bilateral ranging 4mm-2.3CM
MSS, KRAS-G12D; TP53
Xeloda+Avastin 11/16 to 1/8/17
CT Scans: 5/17 colon & lung met shrinkage,11/17 to 7/19 slight progression
iTCR TIL Trial NCT03412877 4/19 to 5/19 Off trial, - Sept. 2019 doing Original TIL trial NCT01174121
CEA:16-11/16; 0.6-5/17; 5.1-9/18; 5.4-10/18; 26.9-7/19

simonseconddone
Posts: 4
Joined: Sun Jul 21, 2019 9:36 am

Re: Anyone with Kras G12V or G12D, NIH trial needs you

Postby simonseconddone » Tue Nov 12, 2019 4:49 am

My father applied at the beginning of this year and wants to join this clinical experiment, but they are full, why are they still recruiting?


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