Switching back to Pembro

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Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Switching back to Pembro

Postby Maia » Sat May 13, 2017 9:03 am

Plastikos you might like this thread form Big Rob here viewtopic.php?f=1&t=55586
He started it with that mention of that trial but ended up with pembro /Keytruda. Wonderfullymade, I do know you already have read that thread.

plastikos
Posts: 330
Joined: Wed Jan 14, 2015 6:09 am

Re: Switching back to Pembro

Postby plastikos » Tue May 16, 2017 10:37 am

Maia wrote:Plastikos you might like this thread form Big Rob here viewtopic.php?f=1&t=55586
He started it with that mention of that trial but ended up with pembro /Keytruda. Wonderfullymade, I do know you already have read that thread.

Thanks Maia. Sorry between work and treatments don't get to check the forum everyday.
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
henry123
Posts: 205
Joined: Sun Oct 08, 2017 3:25 am

Re: Switching back to Pembro

Postby henry123 » Sat Apr 21, 2018 9:37 am

plastikos wrote:
Maia wrote:Plastikos you might like this thread form Big Rob here viewtopic.php?f=1&t=55586
He started it with that mention of that trial but ended up with pembro /Keytruda. Wonderfullymade, I do know you already have read that thread.

Thanks Maia. Sorry between work and treatments don't get to check the forum everyday.


How are things , Plastikos.
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 CT Clear NED
6/19 .9 CT clear
9/19 1.2
Vegan yoga juicing
Still on opdivo

plastikos
Posts: 330
Joined: Wed Jan 14, 2015 6:09 am

Re: Switching back to Pembro

Postby plastikos » Mon Apr 23, 2018 11:28 am

henry123 wrote:
plastikos wrote:
Maia wrote:Plastikos you might like this thread form Big Rob here viewtopic.php?f=1&t=55586
He started it with that mention of that trial but ended up with pembro /Keytruda. Wonderfullymade, I do know you already have read that thread.

Thanks Maia. Sorry between work and treatments don't get to check the forum everyday.


How are things , Plastikos.

Hi. Things are good overall I think.

Recent developments. Had a PET scan last week which showed a small area of FDG uptake with no corresponding lesion on CT. They ordered an MRI with liver specific contrast which is supposedly the most sensitive/specific imaging for liver mets and it showed nothing. Onc still considers me to be NED. Thinks that the FDG uptake may be either inflammation/scarring from the SIRT OR pseudoprogression (something about lymphocytes aggregating in certain areas). Plan is to continue Keytruda and monitor closely.

Has anyone else experienced having sudden spots on PET scan while on immunotherapy then having them resolve eventually? Also if anyone could point me to an immuno trial with a site in Asia or advise me on how to source Keytruda at a lower cost it would be much appreciated. At present I am paying for the drug out of pocket and I am worried about long term sustainability. I was hoping that after 1 year my onc would consider discontinuing it or at least dosing at longer intervals. With recent questionable findings though looks like that discussion will have ton wait.
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

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

Re: Switching back to Pembro

Postby Stewsbetty » Sun Apr 29, 2018 6:57 pm

[/quote]
Hi. Things are good overall I think.

Recent developments. Had a PET scan last week which showed a small area of FDG uptake with no corresponding lesion on CT. They ordered an MRI with liver specific contrast which is supposedly the most sensitive/specific imaging for liver mets and it showed nothing. Onc still considers me to be NED. Thinks that the FDG uptake may be either inflammation/scarring from the SIRT OR pseudoprogression (something about lymphocytes aggregating in certain areas). Plan is to continue Keytruda and monitor closely.

Has anyone else experienced having sudden spots on PET scan while on immunotherapy then having them resolve eventually? Also if anyone could point me to an immuno trial with a site in Asia or advise me on how to source Keytruda at a lower cost it would be much appreciated. At present I am paying for the drug out of pocket and I am worried about long term sustainability. I was hoping that after 1 year my onc would consider discontinuing it or at least dosing at longer intervals. With recent questionable findings though looks like that discussion will have ton wait.[/quote]

I am having my pembro covered through Mercks compassionate care program. I was denied at first but after doing 3 doses on my own and my tumours showing improvement we reapplied and they are now covering my drugs. I hope you find a way to get some aid as the costs accumulate quickly!
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

plastikos
Posts: 330
Joined: Wed Jan 14, 2015 6:09 am

Re: Switching back to Pembro

Postby plastikos » Thu May 03, 2018 8:33 am

Stewsbetty wrote:

Hi. Things are good overall I think.

Recent developments. Had a PET scan last week which showed a small area of FDG uptake with no corresponding lesion on CT. They ordered an MRI with liver specific contrast which is supposedly the most sensitive/specific imaging for liver mets and it showed nothing. Onc still considers me to be NED. Thinks that the FDG uptake may be either inflammation/scarring from the SIRT OR pseudoprogression (something about lymphocytes aggregating in certain areas). Plan is to continue Keytruda and monitor closely.

Has anyone else experienced having sudden spots on PET scan while on immunotherapy then having them resolve eventually? Also if anyone could point me to an immuno trial with a site in Asia or advise me on how to source Keytruda at a lower cost it would be much appreciated. At present I am paying for the drug out of pocket and I am worried about long term sustainability. I was hoping that after 1 year my onc would consider discontinuing it or at least dosing at longer intervals. With recent questionable findings though looks like that discussion will have ton wait.[/quote]

I am having my pembro covered through Mercks compassionate care program. I was denied at first but after doing 3 doses on my own and my tumours showing improvement we reapplied and they are now covering my drugs. I hope you find a way to get some aid as the costs accumulate quickly![/quote]

Hi. May I ask where you reside?
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: 330
Joined: Wed Jan 14, 2015 6:09 am

Re: Switching back to Pembro

Postby plastikos » Thu May 03, 2018 8:35 am

plastikos wrote:
Stewsbetty wrote:

Hi. Things are good overall I think.

Recent developments. Had a PET scan last week which showed a small area of FDG uptake with no corresponding lesion on CT. They ordered an MRI with liver specific contrast which is supposedly the most sensitive/specific imaging for liver mets and it showed nothing. Onc still considers me to be NED. Thinks that the FDG uptake may be either inflammation/scarring from the SIRT OR pseudoprogression (something about lymphocytes aggregating in certain areas). Plan is to continue Keytruda and monitor closely.

Has anyone else experienced having sudden spots on PET scan while on immunotherapy then having them resolve eventually? Also if anyone could point me to an immuno trial with a site in Asia or advise me on how to source Keytruda at a lower cost it would be much appreciated. At present I am paying for the drug out of pocket and I am worried about long term sustainability. I was hoping that after 1 year my onc would consider discontinuing it or at least dosing at longer intervals. With recent questionable findings though looks like that discussion will have ton wait.


I am having my pembro covered through Mercks compassionate care program. I was denied at first but after doing 3 doses on my own and my tumours showing improvement we reapplied and they are now covering my drugs. I hope you find a way to get some aid as the costs accumulate quickly![/quote]

Hi. May I ask where you reside?[/quote]

Sorry just noticed your sig. Unfortunately I have asked in my country (Philippines) and the compassionate care program is not yet available.
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

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

Re: Switching back to Pembro

Postby Stewsbetty » Sun May 06, 2018 7:08 am

plastikos wrote:
plastikos wrote:
Stewsbetty wrote:

Hi. Things are good overall I think.

Recent developments. Had a PET scan last week which showed a small area of FDG uptake with no corresponding lesion on CT. They ordered an MRI with liver specific contrast which is supposedly the most sensitive/specific imaging for liver mets and it showed nothing. Onc still considers me to be NED. Thinks that the FDG uptake may be either inflammation/scarring from the SIRT OR pseudoprogression (something about lymphocytes aggregating in certain areas). Plan is to continue Keytruda and monitor closely.

Has anyone else experienced having sudden spots on PET scan while on immunotherapy then having them resolve eventually? Also if anyone could point me to an immuno trial with a site in Asia or advise me on how to source Keytruda at a lower cost it would be much appreciated. At present I am paying for the drug out of pocket and I am worried about long term sustainability. I was hoping that after 1 year my onc would consider discontinuing it or at least dosing at longer intervals. With recent questionable findings though looks like that discussion will have ton wait.


I am having my pembro covered through Mercks compassionate care program. I was denied at first but after doing 3 doses on my own and my tumours showing improvement we reapplied and they are now covering my drugs. I hope you find a way to get some aid as the costs accumulate quickly!


Hi. May I ask where you reside?[/quote]

Sorry just noticed your sig. Unfortunately I have asked in my country (Philippines) and the compassionate care program is not yet available.[/quote]

So sorry to hear it isn’t available for you. :(
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: 205
Joined: Sun Oct 08, 2017 3:25 am

Re: Switching back to Pembro

Postby henry123 » Tue May 22, 2018 1:12 pm

Hi guys,
Those of you who are on pembro or Opdivo, have you considered adding aspirin to your daily regime. Please discuss with your med oncologist.
It seems at least opdivo gives a better bite for the buck in combination with aspirin.

http://www.bioworld.com/content/nonster ... e-response
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 CT Clear NED
6/19 .9 CT clear
9/19 1.2
Vegan yoga juicing
Still on opdivo

User avatar
henry123
Posts: 205
Joined: Sun Oct 08, 2017 3:25 am

Re: Switching back to Pembro

Postby henry123 » Tue May 22, 2018 1:19 pm

Hi guys,
Those of you who are on pembro or Opdivo, have you considered adding aspirin to your daily regime. Please discuss with your med oncologist.
It seems at least opdivo gives a better bite for the buck in combination with aspirin.

http://www.bioworld.com/content/nonster ... e-response


But in combination with PD-1 blockers, treatment with NSAIDs strongly reduced tumor growth.
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 CT Clear NED
6/19 .9 CT clear
9/19 1.2
Vegan yoga juicing
Still on opdivo

plastikos
Posts: 330
Joined: Wed Jan 14, 2015 6:09 am

Re: Switching back to Pembro

Postby plastikos » Wed May 23, 2018 8:01 am

henry123 wrote:Hi guys,
Those of you who are on pembro or Opdivo, have you considered adding aspirin to your daily regime. Please discuss with your med oncologist.
It seems at least opdivo gives a better bite for the buck in combination with aspirin.

http://www.bioworld.com/content/nonster ... e-response


But in combination with PD-1 blockers, treatment with NSAIDs strongly reduced tumor growth.

Interesting. Wish there was some clinical data to back this up. Being on Pembro now I am extremely afraid of taking anything that could, even in theory, reduce it’s effect. Case in point, I have been taking Vit D3 supplements since diagnosis in 2014. Even my onc was on board with it. But I kept on getting recurrences. Now I read that Vit D3 actually affects the immune response negatively by reducing inflammation. Could this affect Pembro? I don’t know. But I am spending a sh*t load of money on this drug. Might as well allow it to do it’s job without anything affecting it. So I stopped all supplements. So far I am ok.
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: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Switching back to Pembro

Postby LPL » Thu May 24, 2018 3:39 am

plasricos wrote:
I have been taking Vit D3 supplements since diagnosis in 2014. Even my onc was on board with it. But I kept on getting recurrences. Now I read that Vit D3 actually affects the immune response negatively by reducing inflammation.

Your words make me worried. My DH is also taking Vit D3. He doesn’t have any treatments now. Can you please tell me where you read that Vit D3 affects the immune respons negatively.
Thank you in advance /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a 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 NED again Oct-19 :)
:!: 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 & Oct lung mets

plastikos
Posts: 330
Joined: Wed Jan 14, 2015 6:09 am

Re: Switching back to Pembro

Postby plastikos » Thu May 24, 2018 4:36 am

LPL wrote:
plasricos wrote:
I have been taking Vit D3 supplements since diagnosis in 2014. Even my onc was on board with it. But I kept on getting recurrences. Now I read that Vit D3 actually affects the immune response negatively by reducing inflammation.

Your words make me worried. My DH is also taking Vit D3. He doesn’t have any treatments now. Can you please tell me where you read that Vit D3 affects the immune respons negatively.
Thank you in advance /LPL


http://www.jbc.org/content/early/2017/1 ... 5.full.pdf
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
henry123
Posts: 205
Joined: Sun Oct 08, 2017 3:25 am

Re: Switching back to Pembro

Postby henry123 » Sun May 27, 2018 3:19 pm

Even my oncologist has asked me to be off any supplements. I only take aspirin on his advice and occasional curcumin tablets.
These immunotherapy drugs are so new that doctors don't have data on drug interactions.
If I understood the paper on Vit D and pdl1, it may be harmful at high doses. Please correct if I am wrong.
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 CT Clear NED
6/19 .9 CT clear
9/19 1.2
Vegan yoga juicing
Still on opdivo

plastikos
Posts: 330
Joined: Wed Jan 14, 2015 6:09 am

Re: Switching back to Pembro

Postby plastikos » Tue May 29, 2018 12:56 pm

henry123 wrote:Even my oncologist has asked me to be off any supplements. I only take aspirin on his advice and occasional curcumin tablets.
These immunotherapy drugs are so new that doctors don't have data on drug interactions.
If I understood the paper on Vit D and pdl1, it may be harmful at high doses. Please correct if I am wrong.

That is the way I understood it as well.
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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