Switching back to Pembro

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LPL
Posts: 629
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Switching back to Pembro

Postby LPL » Sun Dec 16, 2018 3:20 pm

Wonderfullymade wrote:December scan update...
Still NED, next scan March.
Happy Holidays everyone!
Wonderfullymade

Big Congratulations to you Wonderfullymade !
Wonderful news :)
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met

plastikos
Posts: 329
Joined: Wed Jan 14, 2015 6:09 am

Re: Switching back to Pembro

Postby plastikos » Sun Jan 06, 2019 12:07 pm

henry123 wrote:Plastikos,
Regarding removal of stent. I assume it involves surgery to remove it. If so , as per my understanding surgery of any type should be avoided if you are undergoing immunotherapy.
This is because surgery can cause autoimmune reaction by the immune system.
I was forbidden explicitly even the root canal.
Take care.
Recent scan shows NED . CEA 1.1
Duration between infusions is being increased every 3 months.

Hi Henry. Sorry went on vacation. Just read this. Yeah removal would require an endoscopy to access the stent. I will keep this in mind. Thanks.
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

plastikos
Posts: 329
Joined: Wed Jan 14, 2015 6:09 am

Re: Switching back to Pembro

Postby plastikos » Sun Jan 06, 2019 12:08 pm

Wonderfullymade wrote:December scan update...
Still NED, next scan March.
Happy Holidays everyone!
Wonderfullymade

Amazing news! As for me I am approaching mg 2 year mark on Pembro. Onc and I will decide what to do then.
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

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

Re: Switching back to Pembro

Postby Wonderfullymade » Mon Jan 07, 2019 10:25 pm

Keeping you in my thoughts for a clean scan! Let us know whats decided treatment wise!
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

User avatar
henry123
Posts: 186
Joined: Sun Oct 08, 2017 3:25 am

Re: Switching back to Pembro

Postby henry123 » Fri Jan 11, 2019 10:32 am

Hi,

I have been NED since June 2018 . I am Lynch positive.
Two thoughts regarding future course of action are going on by my oncologists .

1. Stop infusions at two year mark in June 19. Logic: further infusions don't have much effect other than increased chances of toxicity.

2. Continue maintenance dose indefinitely at 4 or 6 week interval . Logic : young patient and toxicity normally happens in initial couple of months.

No study is there for either decisions.

Any thoughts/inputs in this regard would be appreciated.
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 2.0
Aspirin start
6/18 1.5 CT clear
12/18 1.1 CT Clear NED
4/19 1.1
6/19 .9 CT clear
Vegan yoga juicing
Still on opdivo

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

Re: Switching back to Pembro

Postby Wonderfullymade » Fri Jan 11, 2019 4:21 pm

Hi Henry,
My onc with option #1based on toxicity. I was starting to have colitis issues and she said we can always start it back up again if we need to...so far so good.
I am not lynch so I don’t know if that would make a difference.
I am getting scans every 3 months still.
My thoughts are with you! 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

plastikos
Posts: 329
Joined: Wed Jan 14, 2015 6:09 am

Re: Switching back to Pembro

Postby plastikos » Fri Jan 11, 2019 9:05 pm

henry123 wrote:Hi,

I have been NED since June 2018 . I am Lynch positive.
Two thoughts regarding future course of action are going on by my oncologists .

1. Stop infusions at two year mark in June 19. Logic: further infusions don't have much effect other than increased chances of toxicity.

2. Continue maintenance dose indefinitely at 4 or 6 week interval . Logic : young patient and toxicity normally happens in initial couple of months.

No study is there for either decisions.

Any thoughts/inputs in this regard would be appreciated.

I don’t know if cost is an issue (it is where I am from) but I would prefer to continue maintenance at the least frequent and lowest dosing that your onc is comfortable with. Again no evidence to support this. In my case I have been playing around with the idea of stretching out the time in between doses to (if possible) 8-12 weeks. Or maybe stop cold turkey and switch to something cheaper like Xeloda + Avastin (which I have never tried). Where I am from Pembro is not covered by insurance or patient assistance programs.
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

plastikos
Posts: 329
Joined: Wed Jan 14, 2015 6:09 am

Re: Switching back to Pembro

Postby plastikos » Sat Jan 12, 2019 3:02 am

PET CT from yesterday came back. Still NED. Hoping for the best for us all.
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

User avatar
LPL
Posts: 629
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Switching back to Pembro

Postby LPL » Sat Jan 12, 2019 4:52 am

Wonderful news :) Big Congratulations!
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met

stu
Posts: 1089
Joined: Sat Aug 17, 2013 5:46 pm

Re: Switching back to Pembro

Postby stu » Sat Jan 12, 2019 9:09 am

Great news . You made my day .
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 .

dauofcamom
Posts: 33
Joined: Sun Apr 22, 2018 7:11 pm

Re: Switching back to Pembro

Postby dauofcamom » Sat Jan 12, 2019 1:36 pm

This is such great news for you! I am so happy to read this.

It’s been along time since I’ve been on this site but I read occasionally. As with everyone with this diagnosis or a family member who has colon cancer, it’s been a very tough year.

My mom did not respond well to chemo, in fact it almost killed her. Literally. She landed in the hospital for two weeks after her first round and so her oncologist took chemo off the table. Our only hope was to pray that it didn’t come back. Things were great for about four or five months, but the cancer did come back and this time it was in her peritoneum and deemed in operable. She was terminal and was going downhill rapidly.

I flew out to California in October to be with her and my brother and I were making plans for hospice as it didn’t appear she had much more than a few weeks. We had an appointment with her oncologist and because she is MSI high, he put her on immunotherapy (Keytruda). Within two weeks of her first round she was feeling amazing. Her pain was gone and she was putting weight back on. Three months after starting immunotherapy she had a CT scan and it showed that she had a complete response to the immunotherapy as her tumors were completely gone. She has put on 20 pounds and is as energetic and feeling like she did before she ever had cancer. It has been nothing short of a miracle.

Never ever give up.
Long Distance Caregiver to 75 year old Mom
3/2018 - colonoscopy, DX malignant cecum mass
4/2018 - right hemi
Stage IIIC - T4bN1aM0
MSI High
5/2018 - Xelox Regime
10/2018 - peri Mets discovered
10/2018 - Start Keytruda every 3 weeks
12/2018 - scan all clear

User avatar
LPL
Posts: 629
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Switching back to Pembro

Postby LPL » Sat Jan 12, 2019 4:08 pm

Oh daufcamom, what a wonderful thing that has happened for your mom :D So happy for you !! Thank You for sharing this good news with us <3
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb lung met

User avatar
henry123
Posts: 186
Joined: Sun Oct 08, 2017 3:25 am

Re: Switching back to Pembro

Postby henry123 » Mon Jan 14, 2019 1:47 am

dauofcamom wrote:This is such great news for you! I am so happy to read this.

It’s been along time since I’ve been on this site but I read occasionally. As with everyone with this diagnosis or a family member who has colon cancer, it’s been a very tough year.

My mom did not respond well to chemo, in fact it almost killed her. Literally. She landed in the hospital for two weeks after her first round and so her oncologist took chemo off the table. Our only hope was to pray that it didn’t come back. Things were great for about four or five months, but the cancer did come back and this time it was in her peritoneum and deemed in operable. She was terminal and was going downhill rapidly.

I flew out to California in October to be with her and my brother and I were making plans for hospice as it didn’t appear she had much more than a few weeks. We had an appointment with her oncologist and because she is MSI high, he put her on immunotherapy (Keytruda). Within two weeks of her first round she was feeling amazing. Her pain was gone and she was putting weight back on. Three months after starting immunotherapy she had a CT scan and it showed that she had a complete response to the immunotherapy as her tumors were completely gone. She has put on 20 pounds and is as energetic and feeling like she did before she ever had cancer. It has been nothing short of a miracle.

Never ever give up.



Hi
Congratulations on wonderful response to immunotherapy by your mother. It is very similar to my own journey.
Can you kindly share protocol and is she still on Keytruda?
Since it is such new treatment , oncologists are still trying to determine best course of treatment. As one of fellow cc member said we are trailblazers and determining protocols for future patients.
Best wishes .
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 2.0
Aspirin start
6/18 1.5 CT clear
12/18 1.1 CT Clear NED
4/19 1.1
6/19 .9 CT clear
Vegan yoga juicing
Still on opdivo

User avatar
henry123
Posts: 186
Joined: Sun Oct 08, 2017 3:25 am

Re: Switching back to Pembro

Postby henry123 » Mon Jan 14, 2019 1:49 am

plastikos wrote:
henry123 wrote:Hi,

I have been NED since June 2018 . I am Lynch positive.
Two thoughts regarding future course of action are going on by my oncologists .

1. Stop infusions at two year mark in June 19. Logic: further infusions don't have much effect other than increased chances of toxicity.

2. Continue maintenance dose indefinitely at 4 or 6 week interval . Logic : young patient and toxicity normally happens in initial couple of months.

No study is there for either decisions.

Any thoughts/inputs in this regard would be appreciated.

I don’t know if cost is an issue (it is where I am from) but I would prefer to continue maintenance at the least frequent and lowest dosing that your onc is comfortable with. Again no evidence to support this. In my case I have been playing around with the idea of stretching out the time in between doses to (if possible) 8-12 weeks. Or maybe stop cold turkey and switch to something cheaper like Xeloda + Avastin (which I have never tried). Where I am from Pembro is not covered by insurance or patient assistance programs.


Congrats on clear PET-CT.
Cost is a bit of issue but defintely treatment is more important.
I did not respond at all to Xeloda and Avastin.
Will keep you posted.
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 2.0
Aspirin start
6/18 1.5 CT clear
12/18 1.1 CT Clear NED
4/19 1.1
6/19 .9 CT clear
Vegan yoga juicing
Still on opdivo

User avatar
Jack&KatiesMommy
Posts: 583
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Switching back to Pembro

Postby Jack&KatiesMommy » Mon Jan 14, 2019 2:37 pm

Henry:
I have no specific data but antidotally, my oncologist (the one prescribing the Keytruda) stated that if after 2 years on Keytruda I had any potential cancer evident in my body (via CT scan or via CEA) he suggested, based on past experience that we maintain the course and continue treatment indefinitely. He said since he has been prescribing Keytruda (since its original release in 2011) he has had a number of instances where patients that had inactive tumors or CEAs evidencing cancer but who had been stable for months to years, stopped treatment after the 2 year mark only to have their cancer return and they were unable to get it under control again. Again, no scientific evidence of anything but my oncologist with 7 years of experience with immunotherapy's suggestion to me.
Cynthia
Cynthia
Mommy to Jack (8) now (16) and Katie (4) now (12)
(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 mets lymph nodes lung:
05/18: Keytruda (MSS w/Intermediate TMB): 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, .8, 1.1, 1.1, .7
7/18; 9/18; 11/18; 2/19 Clear CT scans


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