Any TP53, BRAF V600E, Wild Type peeps out there?

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pukalania
Posts: 454
Joined: Mon Aug 06, 2012 2:54 am
Location: Honolulu, Seattle

Any TP53, BRAF V600E, Wild Type peeps out there?

Postby pukalania » Tue Apr 07, 2015 12:18 pm

Hi guys,
I understand that everyone's cancer reacts differently but wondering if anyone with these mutations: TP53, BRAF V600E, KRAS Wild Type could share what therapies have worked for them...
Thanks a bunch
OXXOXO
wife 34 dx DH stage IV
Feb10 col res
May10 12 x FOLFOX
Aug12 tumor in sig colon,mets in liver
Aug12 Xeliri Ava
Oct12 xel celebrx rad
Feb13 liver/colon res
Sep13 ill reversal, fistula,
Folfiri SBRT,ADAPT ava
Apr 15 continued growth liver and lungs

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: Any TP53, BRAF V600E, Wild Type peeps out there?

Postby lpas » Tue Apr 07, 2015 12:57 pm

Hi Pukalania,

I've got seven mutations but the only one of those I have is TP53 and I'm still very early in this process so unfortunately I don't have much info to share. Nonetheless, I wanted to say that I think what you're doing is a great idea. I wish we could have a sticky thread at the top of the page where everyone who's had their tumors tested for mutations could list them all out. Then we could all use it as a point of reference. What do you think? I may try to reach out to the mods about this issue if it seems like others agree it would be helpful. I'd love to know if there's anyone else out there with some of my mutations--particularly the less common ones.
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

pukalania
Posts: 454
Joined: Mon Aug 06, 2012 2:54 am
Location: Honolulu, Seattle

Re: Any TP53, BRAF V600E, Wild Type peeps out there?

Postby pukalania » Tue Apr 07, 2015 3:14 pm

Hi Lpas,
This is a great idea...not sure what may be best way to set up...as there must be so many variations...but i think if whoever is interested posts their mutations and we cross reference it...or maybe use the common ones...like KRAS mutant or KRAS non mutant and maybe TP53 and BRAF...it also sounds like met mutations may be different have you done genetic testing for mets? I have been trying to push onc to see if we can do the mets since primary was done 3 years ago and mets are not responding too much to the therapies so far...but onc is saying it is like chasing the wind as every organ will have a different set of mutations...also not sure if insurance will cover genetic testing again since it was once done on primary...thanks for your input :)...also for us FOLFIRI has seemed to work and radiation with adapt for primary but not for liver or lung mets...
wife 34 dx DH stage IV
Feb10 col res
May10 12 x FOLFOX
Aug12 tumor in sig colon,mets in liver
Aug12 Xeliri Ava
Oct12 xel celebrx rad
Feb13 liver/colon res
Sep13 ill reversal, fistula,
Folfiri SBRT,ADAPT ava
Apr 15 continued growth liver and lungs

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GrouseMan
Posts: 888
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Any TP53, BRAF V600E, Wild Type peeps out there?

Postby GrouseMan » Tue Apr 07, 2015 6:58 pm

Kras Wild type means normal KRAS function which is good. You don't want mutations in the KRAS/RAS/NAS signaling cascade. A mutation in any one of these means you can't usually be treated with an Anti-EGFr antibody or Kinase Inhibitor, as they will not generally work because these mutations are down stream of EGFr and keep the signal on regardless of EGFr being present or not. As for BRAF V600E there are some drugs being used to treat Melanomas that are inhibitors of this BRAF mutation. So it might be possible vemurafenib See: http://en.wikipedia.org/wiki/Vemurafenib could be used in your case? Almost everyone with cancer has mutations in TP53. Its the most common mutation I think in all cancers.

Regards,

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

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DK37
Posts: 510
Joined: Tue Sep 17, 2013 8:31 am
Location: San Diego

Re: Any TP53, BRAF V600E, Wild Type peeps out there?

Postby DK37 » Wed Apr 08, 2015 2:43 pm

Hi Pukalania,

I am not BRaf-mut but I wanted to draw you & your MD's attention to this very recent preliminary clinical trial publication from Sloan-Kettering:
http://clincancerres.aacrjournals.org/c ... 9.abstract

Historically, BRAF-mut CRC has not responded as well to BRaf inhibitors in the clinic as Braf-mut melanoma does. Clinical trials have been testing a number of targeted agent combinations in order to try to block whatever "bypass path" around BRaf-inhibitors that it seems many CRC tumors use (that in contrast melanoma doesn't).

This particular trial in the above new publication, albeit still small (they published the first 12 patients), showed a very high response rate by combining a BRaf inhibitor with an EGFR inhibitor. 11/12 patients showed at least stable disease, most showed regressions. Especially since it involves the combination of 2 already FDA-approved drugs, I think it is worth printing out the full paper for your oncologist to read.

-DK
6/4/2012 Dx Stage 3C CRC @ 40 yo. MSS, KRAS-WT, BRAF-WT, p53-mut
7/12 FOLFOX/FOLFIRI
2/13 NED!
8/13 Enlarged lymphs - Stable
10/14 Stage IV. Lung & Lymph mets. 5-FU+bev
3/15 Cetuximab
11/15 FOLFIRI + bev
11/16 Signs of FOLFIRI resistance (Lymph mets)
1/17 Palliative radiation for resistant mets
2/17 FOLFIRI + bev + Maraviroc (off-label)
3/17 FOLFIRI + Erbitux + Maraviroc (off-label)
MSS-CRC Clinical Trial Finder: http://trialfinder.fightcrc.org/
2016 Colondar 2.0 Model
DK37 Science Posts List

pukalania
Posts: 454
Joined: Mon Aug 06, 2012 2:54 am
Location: Honolulu, Seattle

Re: Any TP53, BRAF V600E, Wild Type peeps out there?

Postby pukalania » Thu Apr 09, 2015 11:38 pm

Thanks everyone !!! Grouseman I have been using the summary you sent me before for all the mutations thanks so much it helps me understand it!!

dK that sounds so promising , showed onc today it he doesn't feel comfortable trying :( ... Will do Vectibix alone and then will try TAS 102...will see

Thanks again so much
Love to all
Xoxo
wife 34 dx DH stage IV
Feb10 col res
May10 12 x FOLFOX
Aug12 tumor in sig colon,mets in liver
Aug12 Xeliri Ava
Oct12 xel celebrx rad
Feb13 liver/colon res
Sep13 ill reversal, fistula,
Folfiri SBRT,ADAPT ava
Apr 15 continued growth liver and lungs

pfCml73183
Posts: 653
Joined: Sat Jun 22, 2013 7:49 pm
Facebook Username: Celeste Marie Comeau
Location: FL

Re: Any TP53, BRAF V600E, Wild Type peeps out there?

Postby pfCml73183 » Fri Apr 10, 2015 7:05 am

Pete and I met with Dr. Yeager, the head of this trial last week. We were impressed with her knowledge and energy.
When I asked her why Pete was not chosen for her (this) trial she explained that he has a quirky mutation that they are just beginning to understand, I believe it is called a "594 mutation", so he would not benefit from this particular trial.
We would have loved to work more with her. She has the best "bedside manner" of any medical Dr. we have dealt with thus far.
Dr Yeager even sent a note to Dr.K explaining to her that, because of this mutation he would qualify for the elusive Zelboraf and to continue the appeal process we had in motion with our insurance company. She volunteered to do this on her own.
I would highly recommend this womans expertise to anyone BRAF or otherwise.
Sincerely, Celeste + Peter
Wife and BF to Peter, 54
mCRC/IV/BRAF+
Erbitux and Urelumab trial @MSKCC 3/15
went home 5/8/15


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