What to do after immunotherapy works

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plastikos
Posts: 332
Joined: Wed Jan 14, 2015 6:09 am

What to do after immunotherapy works

Postby plastikos » Tue Jan 15, 2019 6:57 am

Hi. I decided to start a new thread since I needed some opinions and there doesn’t seem to be a specific thread for this topic. I am sure some others here may need or will be needing opinion on this as well.

Brief backgrounder: I am about to hit my 2 year mark on Keytruda monotherapy and have been NED for maybe a little more than a year (see sig below). Most experts recommend completing the 2 years of treatment if patients are responding, paralleling what was done in the clinical trials. But beyond that there isn’t much data on how to proceed with treatment. Some of the options I have heard are:

1) Stop treatments completely at 2 years and just monitor.
2) Continue dosing at the same dosage (200mg flat dose every 3 weeks)
3) Decreasing the dose to half (100mg) but still give it every 3 weeks.
4) Increase intervals in between doses by a week at a time until 6 weeks then maintain.
5) Stop treatments cold turkey then give a full dose every 3 months (the supposed length of Keytruda’s duration of action?).

For everyone here currently in the same boat or about to get there what are you and/or your oncs planning to do? I don’t mean to be insensitive to those who aren’t in the same situation. I am aware that it is a “good” problem to have. But for people like me for whom cost is a major issue it is something that has to be dealt with. Hoping people will chime in. Again hoping and praying for the best for all of us 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
2019 NED

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CRguy
Posts: 10093
Joined: Sun Feb 10, 2008 6:00 pm

Re: What to do after immunotherapy works

Postby CRguy » Thu Jan 17, 2019 12:37 pm

bumping up here for you

Sorry I have no experience or answers BUTT this is a great topic to gather some more info moving forward

Cheers and 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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Jack&KatiesMommy
Posts: 605
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: What to do after immunotherapy works

Postby Jack&KatiesMommy » Thu Jan 17, 2019 2:17 pm

Since the use of immunotherapy (in any significant way) has only been ongoing for a few years....and since it has been used since @2011 in melanoma, lymphoma, lung cancer.....you may get more valid information from people with those cancers since many of them (unlike colon cancer patients) may have started their treatment 5-7 years ago.

Just a thought
Cynthia
Cynthia
Mommy to Jack (8) now (17) and Katie (4) now (13)
(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
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

rp1954
Posts: 1523
Joined: Mon Jun 13, 2011 1:13 am

Re: What to do after immunotherapy works

Postby rp1954 » Fri Jan 18, 2019 3:02 pm

Maybe you can get some data from other cancers' patients like J&KMom said.

Totally outside of the Keytruda, we've had the longer interval vs reduced dose experiments go either way with different items. The main thing has been to have a better than standard monitoring program, with a recovery plan for any change of regimin. We used more blood panels and markers at a higher frequency and took care to monitor and reduce liver and inflammation effects. The benefit was faster corrective responses with less rise or loss of control, and less patient anxiety/panic (more confidence even in the face of rises, typically due to treatment reductions or marker changes).

In your shoes, I might be looking for literature and data about which of any nutrient(s) might interact like a switch with Keytruda and then going to a long term plan in the other immune related directions. My experience in 5FU chemo has been oncology overclaimed negative interactions in lieu of data. However some literature is that specific switch behavior will occur with 1-2 nutrients for a given biological.

As important as 5FU is for immunochemo, at some point the off label and immune stuff had more than 50% of the activity measured and that changes were associated with predicted shrinkage or marker decline events.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

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

Re: What to do after immunotherapy works

Postby Wonderfullymade » Fri Jan 18, 2019 8:07 pm

Hi Plastikos,
I had my last treatment August 2017 and have had no treatment since. I have been getting scans/ bloodwork every 3 months. So far still NED. Next scan is in March.
I have read mixed treatment options so it seems to be no agreement between Dr.I agree with researching what lung cancer results are as they have been on the drug longer.
Please keep us up to date!
Wonderfullymade
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

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henry123
Posts: 209
Joined: Sun Oct 08, 2017 3:25 am

Re: What to do after immunotherapy works

Postby henry123 » Sun Jan 20, 2019 10:52 pm

Hello
My story is similar to Plastikos except that I am on Nivolumab and not Keytruda.
I am approaching 2 year mark and have been NED for almost a year.
In my case , intervals between infusions has been increased to 6 weeks from original 2 weeks.
But what is to be done after 2 years is still up in the air.
Besides the cost there is also the issue of toxicity and potential side effects.
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
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
4/18 2
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
6/19 .9 CT clear
1/20 NED Opdivo stop

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henry123
Posts: 209
Joined: Sun Oct 08, 2017 3:25 am

Re: What to do after immunotherapy works

Postby henry123 » Sun Jan 20, 2019 10:52 pm

Where has 2 years figure come from?
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
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
4/18 2
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
6/19 .9 CT clear
1/20 NED Opdivo stop

stu
Posts: 1259
Joined: Sat Aug 17, 2013 5:46 pm

Re: What to do after immunotherapy works

Postby stu » Mon Jan 21, 2019 3:13 am

In the UK they have a funding agreement with the pharmaceutical company to receive the drug at a reduced cost for two years . After that it goes back into the normal pricing range . However I was reading at the weekend four other drug companies have already hit the market with four new Immuotherapy drugs for lung cancer so hopefully the pricing will level out .
That’s certainly why they have ring fenced the two year mark over here . Not a clinical reason . The lung cancer patients are currently navigating these waters as they have just come to the end of the two years here . I have been following their journey and feel their anxiety.
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
Oct 2018. Another clear scan .

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juliej
Posts: 3085
Joined: Thu Aug 05, 2010 12:59 pm

Re: What to do after immunotherapy works

Postby juliej » Wed Jan 23, 2019 5:03 pm

rp1954 wrote:
In your shoes, I might be looking for literature and data about which of any nutrient(s) might interact like a switch with Keytruda and then going to a long term plan in the other immune related directions. My experience in 5FU chemo has been oncology overclaimed negative interactions in lieu of data. However some literature is that specific switch behavior will occur with 1-2 nutrients for a given biological.

Agree with this. Research any relationship between Keytruda and nutrients. LEF might be able to point you in a good direction. Or a willing researcher at NHI. Additional clinical and preclinical research in this field is urgently needed.
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

Stewsbetty
Posts: 170
Joined: Thu Jul 14, 2016 7:08 am

Re: What to do after immunotherapy works

Postby Stewsbetty » Fri Jan 25, 2019 8:59 am

I just went in for a consult with an oncologist for this very reason.

My brief. I have been on Keytruda since September of 2017. Dramatic response for 9 months. I have now leveled off to stable with one node measuring at 1.8 cm. I am receiving the drug free through Merck’s compassionate care program. They have set my limit to 35 treatments. I am at 24.

I went in to ask about PEt scanning and potentially stopping treatment now. My thinking is perhaps the enlarged node is necrotic. And maybe I should save some of the “freebies” in case of growth later on.

The oncologist’s opinion is that I should stay the course for the 2 years. She said a PET might not show activity but that it could still be cancerous, just not detectable. I was disappointed but willing to go with what she says. I guess I will just find out if anything is happening later than sooner.
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda scans every 3 months showing shrinkage and stability to present
November 2018 CT shows only 1 small tumour left

User avatar
henry123
Posts: 209
Joined: Sun Oct 08, 2017 3:25 am

Re: What to do after immunotherapy works

Postby henry123 » Sat Jan 26, 2019 11:46 pm

https://clinicaltrials.gov/ct2/show/NCT03631641

A clinical trial for maintenance/prevention dose of Nivolumab for Lynch Syndrome patients.
They are giving it for 2 years every 3 months.
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
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
4/18 2
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
6/19 .9 CT clear
1/20 NED Opdivo stop

plastikos
Posts: 332
Joined: Wed Jan 14, 2015 6:09 am

Re: What to do after immunotherapy works

Postby plastikos » Sun Jan 27, 2019 11:17 am

henry123 wrote:https://clinicaltrials.gov/ct2/show/NCT03631641

A clinical trial for maintenance/prevention dose of Nivolumab for Lynch Syndrome patients.
They are giving it for 2 years every 3 months.

This is interesting. Thanks. Does anyone know the science behind the 3 month interval dosing?
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
2019 NED


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