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Re: Switching back to Pembro

Posted: Sat May 13, 2017 9:03 am
by Maia
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.

Re: Switching back to Pembro

Posted: Tue May 16, 2017 10:37 am
by plastikos
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.

Re: Switching back to Pembro

Posted: Sat Apr 21, 2018 9:37 am
by henry123
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.

Re: Switching back to Pembro

Posted: Mon Apr 23, 2018 11:28 am
by plastikos
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.

Re: Switching back to Pembro

Posted: Sun Apr 29, 2018 6:57 pm
by Stewsbetty
[/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!

Re: Switching back to Pembro

Posted: Thu May 03, 2018 8:33 am
by plastikos
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?

Re: Switching back to Pembro

Posted: Thu May 03, 2018 8:35 am
by plastikos
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.

Re: Switching back to Pembro

Posted: Sun May 06, 2018 7:08 am
by Stewsbetty
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. :(

Re: Switching back to Pembro

Posted: Tue May 22, 2018 1:12 pm
by henry123
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

Re: Switching back to Pembro

Posted: Tue May 22, 2018 1:19 pm
by henry123
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.

Re: Switching back to Pembro

Posted: Wed May 23, 2018 8:01 am
by plastikos
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.

Re: Switching back to Pembro

Posted: Thu May 24, 2018 3:39 am
by LPL
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

Re: Switching back to Pembro

Posted: Thu May 24, 2018 4:36 am
by plastikos
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

Re: Switching back to Pembro

Posted: Sun May 27, 2018 3:19 pm
by henry123
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.

Re: Switching back to Pembro

Posted: Tue May 29, 2018 12:56 pm
by plastikos
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.