Can someone who is stage 4 really end stage still benifit from Keytruda?

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Lagne
Posts: 2
Joined: Mon Mar 26, 2018 7:18 pm

Can someone who is stage 4 really end stage still benifit from Keytruda?

Postby Lagne » Mon Mar 26, 2018 7:32 pm

Hello, I am a new member. My mother was diagnosed with stage 4 Colon Cancer 5 weeks ago from out of no where. We met with a specialist at Dana Farber. He told us that a very small percentage of people 3-4% have a genetic mutation that have responded very well to an Immunotherapy called Keytruda. He didn't think she had this gene but sent her blood off anyway, fast forward three weeks, she has declined rapidly. We got a call last Wed that she does indeed have this MMR gene mutation that makes her a good candidate for Keytruda, except that she is now extremely weak and in hospice. Does anyone have any information about how far gone is too far gone to try this immunotherapy? From what I have read many stage 4 Colon cancer patients saw remarkable results but I don't know how hard to push this. I feel so torn about what to do...

some808guy
Posts: 10
Joined: Thu Oct 01, 2015 2:38 am

Re: Can someone who is stage 4 really end stage still benifit from Keytruda?

Postby some808guy » Tue Mar 27, 2018 2:28 am

Stage 4 here... I am on keytruda. it has worked wonders for me to say the least.
not cured yet... but the difference between past therapies and keytruda are night and day.
My opinion would be to push hard for it...
having MMR signature is lucky.
there are numerous success stories here about it.

User avatar
DH2Sleen
Posts: 81
Joined: Thu Jan 29, 2015 10:10 am

Re: Can someone who is stage 4 really end stage still benifit from Keytruda?

Postby DH2Sleen » Tue Mar 27, 2018 7:08 am

Lagne wrote:Hello, I am a new member. My mother was diagnosed with stage 4 Colon Cancer 5 weeks ago from out of no where. We met with a specialist at Dana Farber. He told us that a very small percentage of people 3-4% have a genetic mutation that have responded very well to an Immunotherapy called Keytruda. He didn't think she had this gene but sent her blood off anyway, fast forward three weeks, she has declined rapidly. We got a call last Wed that she does indeed have this MMR gene mutation that makes her a good candidate for Keytruda, except that she is now extremely weak and in hospice. Does anyone have any information about how far gone is too far gone to try this immunotherapy? From what I have read many stage 4 Colon cancer patients saw remarkable results but I don't know how hard to push this. I feel so torn about what to do...

We have had a member here who was expecting to die within days, then she found out she was MMR deficient and went on Keytruda and it killed all of her cancer (unfortunately she died of complications of a surgery). She should get a dose of it as soon as possible (I don't intend this to be medical advice). If a doctor knows she is MMR deficient and even hours from passing, he should give her the drug. It doesn't necessarily work fast, but it is probably her only hope. There is no down side to taking the drug. Just my opinion.
DW, Sleen dx 9/2013 @47yo: IIIc T4b N2b MX
9/2013 colectomy
10/2013 - 3/2014 FOLFOX
4/2014 - 6/2014 Rad to bladder
12/2014 +'ve for lung mets, MX becomes M1
3/2015 enter TIL trial @ NIH
7/1/15 Receive 148E9 cells to target K-ras G12D mutation
8/11/15 Reduction=18%, no new tumors
9/15/15 25%
10/20/15 27%; PET -> one hot met
11/24/15 30% all mets shrinking
1/26/16 46% but one suspicious met
3/24/16 46% but one growing
4/7/16 Lung lobectomy NED for the first time
3/3/20 Still NED "cured"

Wonderfullymade
Posts: 140
Joined: Tue Jan 12, 2016 4:33 pm

Re: Can someone who is stage 4 really end stage still benifit from Keytruda?

Postby Wonderfullymade » Tue Mar 27, 2018 7:49 am

I wasnt on hospice but was pretty close! Failed at folfox and folfiri...crap kept spreading and was taking over my lymph system. A lot of my Drs weren’t offering much hope, but thankfully my fellow oncologist was all excited about this new treatment and got me on it off label.
I wouldnt be here if it weren’t for the Keytruda! I wouldnt say it doesnt have side effects....but they are nothing like chemo, and even as sick as your mom is she should not have any drug side effects ( I am not a Dr, just my experience).
Never give up hope! Being mmr is a game changer! I dont know how fast it will work...but you gotta try!!


Sorry I forget how to update my sig but I have been NED for 7 months now! CEA is still 1.1
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High (MLH1, PMS2) not Lynch
Folfox 3 cycles
5/2015 ER for subtotal colectomomy due to perforated colon, ovary removed
Folfuri/Pantiumumab 5 cycles
8/2015 liver resection, gallbladder removed and new LN
10/2015 CT scan new nodes
10/2015 Pembro started CEA 2.2
5/2017 stable lung things, coltis, lymph nodes stable cea 1/2017 1.1
9/2017 NED CEA 1.1 ( stopped Pembro)
2/2019 ER for DVT/ PE
2/2019 clean CT (NED) CEA 1.1

User avatar
henry123
Posts: 218
Joined: Sun Oct 08, 2017 3:25 am

Re: Can someone who is stage 4 really end stage still benifit from Keytruda?

Postby henry123 » Tue Mar 27, 2018 10:03 am

Last January, I was given 3 to 6 months.
I am still here thanks to immunotherapy with Nivolumab Opdivo. You can see more details in my signature.
Please start with either of them immediately.
Also on a side note, it seems a low dose aspirin works quite well with Nivolumab.
Best of luck.
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
1/20 NED Opdivo stop
8/23 1.0 All ok

Lagne
Posts: 2
Joined: Mon Mar 26, 2018 7:18 pm

Re: Can someone who is stage 4 really end stage still benifit from Keytruda?

Postby Lagne » Tue Mar 27, 2018 11:41 am

Thank you so much to all of you who took the time to respond to my question last night. I was so comforted to read your posts. I am new here and am not sure how to send private messages but wondered if any of you would be willing to talk to me further, answer some more questions etc. I am trying to build a strong case to bring to my family and feel like I really need real people who have been through this to give their overview. I am beyond grateful to each one of you!

ronnieciao
Posts: 95
Joined: Sat Nov 08, 2014 1:58 pm
Location: Northern Italy and UK

Re: Can someone who is stage 4 really end stage still benifit from Keytruda?

Postby ronnieciao » Tue Mar 27, 2018 3:16 pm

My mum is no longer here unfortunately. But if I were in your shoes, I would really, really hope she tries it. Of course it carries risks, especially if she is very weak already. It also carries enormous potential, but at the end of the day, is the doctor who has to assess if she can withstand the treatment, and ultimately, it's your mother's decision. She's the patient.

My mum went on an immunotherapy clinical trial at the end, when everything else failed. It gave her no benefit, because she did NOT have this rare mutation your mother has. Believe me, I would given ANYTHING to read "MMR deficient" in her genetic report.....
DD of Mum, 53
Diagnosed CC Stage IVb, October 2014
Mets to liver, peri, ovaries, bones
Folfox + Panitumumab
5fu+Panitumumab
Folfiri + Avastin
Cetuximab monotherapy
Immunotherapy: Tecenriq (Atezolizumab) single agent trial: failed
Left us Feb 2017


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