Switching back to Pembro

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plastikos
Posts: 309
Joined: Wed Jan 14, 2015 6:09 am

Re: Switching back to Pembro

Postby plastikos » Wed Sep 19, 2018 9:53 am

Just bumping this same thread as an update rather than create a new one. Been on Keytruda as monotherapy for 18 months now (with SIRT somewhere in the middle of it). PET-CT last Saturday still read as NED. Stretching intervals in between doses now a week at a time. GI and I wondering what to do with my biliary stent which is still there. Good problem to have since I don’t think my GI was expecting I would live long enough for us to discuss removing it when he put it in to relieve my obstructive jaundice last December 2016. There is always hope. Hoping for the best for everyone here still fighting.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED

User avatar
bitchslapped
Posts: 1483
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Switching back to Pembro

Postby bitchslapped » Wed Sep 19, 2018 12:03 pm

You have come a long way plastikos. Immunotherapy a BIG DEAL...a real success story thus far & @ a young age. I hope you continue to update regarding dosing frequency (not clear on that) & decision re: stent.
Sometimes I'm of the mind - If it ain't broke, don't fix it, however maybe you don't want to retire w/it. :wink:

Best Wishes
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

stu
Posts: 849
Joined: Sat Aug 17, 2013 5:46 pm

Re: Switching back to Pembro

Postby stu » Wed Sep 19, 2018 2:13 pm

Brilliant news and dilemmas of that nature are welcome . I am sure you are giving the surgeon much to smile about .
It has been fantastic following your story and seeing how far you have come .
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared

plastikos
Posts: 309
Joined: Wed Jan 14, 2015 6:09 am

Re: Switching back to Pembro

Postby plastikos » Sun Sep 23, 2018 12:11 am

bitchslapped wrote:You have come a long way plastikos. Immunotherapy a BIG DEAL...a real success story thus far & @ a young age. I hope you continue to update regarding dosing frequency (not clear on that) & decision re: stent.
Sometimes I'm of the mind - If it ain't broke, don't fix it, however maybe you don't want to retire w/it. :wink:

Best Wishes
BS

Thanks BS. I get what you mean. But of course cost is an issue. Also I think everyone wants to be off treatment eventually. My onc and I are playing it by ear like I assume all other people on this treatment are due to the la k of definite protocols. Increasing dosing intervals by a week at a time now. Approaching 2 years on the drug. Will examine options then. Stop cold turkey? Half doses? Nothing definite yet.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED

plastikos
Posts: 309
Joined: Wed Jan 14, 2015 6:09 am

Re: Switching back to Pembro

Postby plastikos » Sun Sep 23, 2018 12:11 am

stu wrote:Brilliant news and dilemmas of that nature are welcome . I am sure you are giving the surgeon much to smile about .
It has been fantastic following your story and seeing how far you have come .
Take care,
Stu


Thanks Stu.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED

User avatar
bitchslapped
Posts: 1483
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Switching back to Pembro

Postby bitchslapped » Sun Sep 23, 2018 11:27 am

bitchslapped wrote:Sometimes I'm of the mind - If it ain't broke, don't fix it, however maybe you don't want to retire w/it. :wink:


Plastikos....I was actually referring to the stent in that statement. How long one needs to stay on chemo or any kind of cancer meds, especially some that are looking @ chemo for life, side effects :arrow: well just not something I would make that kind of comment on. We want all cancer patients cured & OFF chemo!

plastikos wrote:Thanks BS. I get what you mean. But of course cost is an issue. Also I think everyone wants to be off treatment eventually. My onc and I are playing it by ear like I assume all other people on this treatment are due to the la k of definite protocols. Increasing dosing intervals by a week at a time now. Approaching 2 years on the drug. Will examine options then. Stop cold turkey? Half doses? Nothing definite yet.


You pose an interesting issue re: d/c of Keytruda immunotherapy! Please keep us informed. New territory & you are a success story here.

Congratulations, Best Wishes
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

plastikos
Posts: 309
Joined: Wed Jan 14, 2015 6:09 am

Re: Switching back to Pembro

Postby plastikos » Mon Sep 24, 2018 9:01 pm

@bitchslapped: Re stent. Sorry missed that. :) Yup we are also debating on what to do with the stent. I think everybody would feel better if its there so the endoscopist who put it in says we can leave it there as long as its patent.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED

henry123
Posts: 136
Joined: Sun Oct 08, 2017 3:25 am

Re: Switching back to Pembro

Postby henry123 » Thu Sep 27, 2018 5:01 pm

Great news Plastikos,
Even my oncologist is increasing duration between fusions by a week every 3 months or so after a year of infusions every 2 weeks.
It started with once every 2 weeks. It is now at once a month.
46yo M
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
msi-h Lynch
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes , new onset of multi nodules in liver.
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver normal
1/18 3.6
2/18 2.3
4/18 2.0
opdivo continue
Aspirin start
6/18 1.5 CT clear
8/18 1.3
NED
Vegan yoga juicing apricot

plastikos
Posts: 309
Joined: Wed Jan 14, 2015 6:09 am

Re: Switching back to Pembro

Postby plastikos » Fri Sep 28, 2018 11:20 am

henry123 wrote:Great news Plastikos,
Even my oncologist is increasing duration between fusions by a week every 3 months or so after a year of infusions every 2 weeks.
It started with once every 2 weeks. It is now at once a month.

Great to hear that Henry. Looks like we are kind of in the same boat right now. If it’s ok please do keep us updated on your treatment from time to time as well. The way I see it there’s really no right or wrong answer when it comes to how to stop or continue immunotherapy. I wouldn’t mind doing it indefinitely really if it weren’t for the cost of treatment.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED

Wonderfullymade
Posts: 124
Joined: Tue Jan 12, 2016 4:33 pm

Re: Switching back to Pembro

Postby Wonderfullymade » Fri Sep 28, 2018 12:29 pm

plastikos wrote:
henry123 wrote:Great news Plastikos,
Even my oncologist is increasing duration between fusions by a week every 3 months or so after a year of infusions every 2 weeks.
It started with once every 2 weeks. It is now at once a month.

Great to hear that Henry. Looks like we are kind of in the same boat right now. If it’s ok please do keep us updated on your treatment from time to time as well. The way I see it there’s really no right or wrong answer when it comes to how to stop or continue immunotherapy. I wouldn’t mind doing it indefinitely really if it weren’t for the cost of treatment.


I dont have internet access much lately, but lurk occasionally.
Signing in to give an update. I havent had treatment in about 15 months, and as of my last scan (2weeks ago) I was still NED. My onc is going to continue to scan every 3 months for now since she doesnt know how long it will last.!
Its a bit nerve wracking, but at the same time enjoying the respite.
Best wishes for all!
Wonderfullymade
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High 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
10/2018 NED CEA 1.1

plastikos
Posts: 309
Joined: Wed Jan 14, 2015 6:09 am

Re: Switching back to Pembro

Postby plastikos » Fri Sep 28, 2018 5:06 pm

Wonderfullymade wrote:
plastikos wrote:
henry123 wrote:Great news Plastikos,
Even my oncologist is increasing duration between fusions by a week every 3 months or so after a year of infusions every 2 weeks.
It started with once every 2 weeks. It is now at once a month.

Great to hear that Henry. Looks like we are kind of in the same boat right now. If it’s ok please do keep us updated on your treatment from time to time as well. The way I see it there’s really no right or wrong answer when it comes to how to stop or continue immunotherapy. I wouldn’t mind doing it indefinitely really if it weren’t for the cost of treatment.


I dont have internet access much lately, but lurk occasionally.
Signing in to give an update. I havent had treatment in about 15 months, and as of my last scan (2weeks ago) I was still NED. My onc is going to continue to scan every 3 months for now since she doesnt know how long it will last.!
Its a bit nerve wracking, but at the same time enjoying the respite.
Best wishes for all!
Wonderfullymade

That is amazing news and very encouraging. Thank you for sharing Wonderfullymade.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED

henry123
Posts: 136
Joined: Sun Oct 08, 2017 3:25 am

Re: Switching back to Pembro

Postby henry123 » Sat Sep 29, 2018 3:50 am

Wonderfullymade wrote:
plastikos wrote:
henry123 wrote:Great news Plastikos,
Even my oncologist is increasing duration between fusions by a week every 3 months or so after a year of infusions every 2 weeks.
It started with once every 2 weeks. It is now at once a month.

Great to hear that Henry. Looks like we are kind of in the same boat right now. If it’s ok please do keep us updated on your treatment from time to time as well. The way I see it there’s really no right or wrong answer when it comes to how to stop or continue immunotherapy. I wouldn’t mind doing it indefinitely really if it weren’t for the cost of treatment.


I dont have internet access much lately, but lurk occasionally.
Signing in to give an update. I havent had treatment in about 15 months, and as of my last scan (2weeks ago) I was still NED. My onc is going to continue to scan every 3 months for now since she doesnt know how long it will last.!
Its a bit nerve wracking, but at the same time enjoying the respite.
Best wishes for all!
Wonderfullymade


If my calculation is correct, you took pembro for 2 years.
Please do keep updating regularly. It keeps us in positive frame of mind.
46yo M
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
msi-h Lynch
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes , new onset of multi nodules in liver.
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver normal
1/18 3.6
2/18 2.3
4/18 2.0
opdivo continue
Aspirin start
6/18 1.5 CT clear
8/18 1.3
NED
Vegan yoga juicing apricot

Wonderfullymade
Posts: 124
Joined: Tue Jan 12, 2016 4:33 pm

Re: Switching back to Pembro

Postby Wonderfullymade » Mon Oct 01, 2018 11:36 am

I should be returning to more internet time in the fall. I have been using my time to RV, so I don’t always have access.
I took Pembro for 20 months. I was battling colitis and then started having some breathing problems (turns out it was asthma-never had it before...side effect..dunno), so Dr did a CT and. PET to discover no evidence of disease.
I am so happy to bring positive news!!!
Next scan is December.
I continue my prayers for us all,
Wonderfully made
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High 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
10/2018 NED CEA 1.1


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