Nadia

Thank you very much for your replies, it's nice to know there are other options out there, even in phase 1 trials.  Dave is still scheduled to get his Keytruda on April 14th, his Dr is hesitant to take him out of the SAP (Special Access Program) since Dave is a partial responder, and once out of the program, there will be no way to go back on antiPD1.

Our only option left here is to try to do cyber knife on the 3.4cm tumour in the lung, while still on Keytruda  We don't know yet (the rad oncologist didn't respond yet to our questions), if that's even possible , we heard through another's patient experience that radiation in the lung and antiPD1s are not a good match, the Keytruda amplifies the effect of radiation on the lung tissue leading to severe pneumonitis and possible burns. And then we have to find a way to deal with the rest of tumours, the most worrisome being the gastrohepatic ligament lymph nodes. 

We applied for "on line second opinion" consultations at both MSK and Moffitt, and our Dr was mentored by dr. Webber, so he promised he will e-mail to ask for ideas.  I can see us traveling to one of the two centers above for opinions, but we have to be very choosy and knowledgeable, since none of the expenses will be covered by the Canadian Healthcare or by our supplemental insurance.  The only place where the treatment is covered is NHI for TILs, but I recently read they do not accept international patients anymore. There is indeed a TILS trial at Princess Margaret Hospital in Toronto, but they just started last year, and it's too soon for them to have any results out yet.  

i read a while ago about antiKIR and LAG 3 type trial, but it completely slipped my mind, I'm so immersed in all this world that I failed to see the trees while living in the middle of the forrest.  I will look into that, thank you, thank you for reminding me!

There is also the option to go back to Dabrafenib, but when he was forced to stop it last time the tumours grew like wildfire, in a matter of 5 days he could feel them double in size.  We were trying to have a month of washout, but his Dr started him on Keytruda right away when he saw how fast the tumours grew. So we can't have dabrafenib unless something else is already lined up and ready to go.

I'm in a very confusing and heartbreaking place. Dave is in good physical shape, so theoretically he can get in a harsh trial, like TILs, but I'm not sure I can live with the consequences if something goes really bad, lots of toxicity.  But then again, the alternative is just as bad.  We're so not the "wait and see" type of people.

Thank you very much for your replies, it's nice to know there are other options out there, even in phase 1 trials.  Dave is still scheduled to get his Keytruda on April 14th, his Dr is hesitant to take him out of the SAP (Special Access Program) since Dave is a partial responder, and once out of the program, there will be no way to go back on antiPD1.

Our only option left here is to try to do cyber knife on the 3.4cm tumour in the lung, while still on Keytruda  We don't know yet (the rad oncologist didn't respond yet to our questions), if that's even possible , we heard through another's patient experience that radiation in the lung and antiPD1s are not a good match, the Keytruda amplifies the effect of radiation on the lung tissue leading to severe pneumonitis and possible burns. And then we have to find a way to deal with the rest of tumours, the most worrisome being the gastrohepatic ligament lymph nodes. 

We applied for "on line second opinion" consultations at both MSK and Moffitt, and our Dr was mentored by dr. Webber, so he promised he will e-mail to ask for ideas.  I can see us traveling to one of the two centers above for opinions, but we have to be very choosy and knowledgeable, since none of the expenses will be covered by the Canadian Healthcare or by our supplemental insurance.  The only place where the treatment is covered is NHI for TILs, but I recently read they do not accept international patients anymore. There is indeed a TILS trial at Princess Margaret Hospital in Toronto, but they just started last year, and it's too soon for them to have any results out yet.  

i read a while ago about antiKIR and LAG 3 type trial, but it completely slipped my mind, I'm so immersed in all this world that I failed to see the trees while living in the middle of the forrest.  I will look into that, thank you, thank you for reminding me!

There is also the option to go back to Dabrafenib, but when he was forced to stop it last time the tumours grew like wildfire, in a matter of 5 days he could feel them double in size.  We were trying to have a month of washout, but his Dr started him on Keytruda right away when he saw how fast the tumours grew. So we can't have dabrafenib unless something else is already lined up and ready to go.

I'm in a very confusing and heartbreaking place. Dave is in good physical shape, so theoretically he can get in a harsh trial, like TILs, but I'm not sure I can live with the consequences if something goes really bad, lots of toxicity.  But then again, the alternative is just as bad.  We're so not the "wait and see" type of people.

Thank you very much for your replies, it's nice to know there are other options out there, even in phase 1 trials.  Dave is still scheduled to get his Keytruda on April 14th, his Dr is hesitant to take him out of the SAP (Special Access Program) since Dave is a partial responder, and once out of the program, there will be no way to go back on antiPD1.

Our only option left here is to try to do cyber knife on the 3.4cm tumour in the lung, while still on Keytruda  We don't know yet (the rad oncologist didn't respond yet to our questions), if that's even possible , we heard through another's patient experience that radiation in the lung and antiPD1s are not a good match, the Keytruda amplifies the effect of radiation on the lung tissue leading to severe pneumonitis and possible burns. And then we have to find a way to deal with the rest of tumours, the most worrisome being the gastrohepatic ligament lymph nodes. 

We applied for "on line second opinion" consultations at both MSK and Moffitt, and our Dr was mentored by dr. Webber, so he promised he will e-mail to ask for ideas.  I can see us traveling to one of the two centers above for opinions, but we have to be very choosy and knowledgeable, since none of the expenses will be covered by the Canadian Healthcare or by our supplemental insurance.  The only place where the treatment is covered is NHI for TILs, but I recently read they do not accept international patients anymore. There is indeed a TILS trial at Princess Margaret Hospital in Toronto, but they just started last year, and it's too soon for them to have any results out yet.  

i read a while ago about antiKIR and LAG 3 type trial, but it completely slipped my mind, I'm so immersed in all this world that I failed to see the trees while living in the middle of the forrest.  I will look into that, thank you, thank you for reminding me!

There is also the option to go back to Dabrafenib, but when he was forced to stop it last time the tumours grew like wildfire, in a matter of 5 days he could feel them double in size.  We were trying to have a month of washout, but his Dr started him on Keytruda right away when he saw how fast the tumours grew. So we can't have dabrafenib unless something else is already lined up and ready to go.

I'm in a very confusing and heartbreaking place. Dave is in good physical shape, so theoretically he can get in a harsh trial, like TILs, but I'm not sure I can live with the consequences if something goes really bad, lots of toxicity.  But then again, the alternative is just as bad.  We're so not the "wait and see" type of people.

Thank you very much for your responses, he will see his Derm today (his every 3 months skin check) and ask, but also I will contact his onc and see what his opinion is.  It is painful and unpleaseant, but what a small price to pay for access to Keytruda!

Thank you very much for your responses, he will see his Derm today (his every 3 months skin check) and ask, but also I will contact his onc and see what his opinion is.  It is painful and unpleaseant, but what a small price to pay for access to Keytruda!

Thank you very much for your responses, he will see his Derm today (his every 3 months skin check) and ask, but also I will contact his onc and see what his opinion is.  It is painful and unpleaseant, but what a small price to pay for access to Keytruda!