› Forums › General Melanoma Community › What’s next?
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_Paul_.
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- April 3, 2015 at 4:06 am
We live in Canada, hubs failed ipi, had to interrupt Dabrafenib due to side effects, and after 12 shots of Keytruda the scans are showing growth in one of his existing lung nodules and new growth in the gastro hepatic ligament lymph nodes. He had a brain tumour, cyber-knifed in sept 2014, and as of last MRI (march 2015) has shrunk from 1.9mm to 1.4mm.
Other than the chemo cocktails, or going back to Dabrafenib and find a way to deal with the severe side effects, what other options do we have?
Are the TILs trials at NHI in Bethesda still open for international patients? What is the best way to approach them? Can we, as patients approach them or do we need a dr referral?
I'm at a point where I need help, all the searches I do come up without anything else but IL2 and/or TILs; he appears to be excluded from any other type of trial due to prior exposure to ipi, antiPD1 and BRaf meds. Also, not sure about the vaccine type treatments, they all seem to require less than 3 visceral tumours, he has more than 12.Thank you for your input, I hope we can come up with something to keep us in the game a little longer.
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- April 3, 2015 at 5:06 am
Sorry to hear they are giving up on keytruda after 12 doses. I've had 16 and get my next scan in less than 3 weeks. I've always had something growing so I'm hoping for a miracle of no growth this time. So I might be right beside your husband but right now I'm praying I'm not.
Anyway there are lots of things out there but mostly phase 1 stuff. Sooo it's a gamble. Til if he is strong enough to go through that treatment is probably a good option. I have no idea about international. However I think some royal place in Quebec I think has started til. I know for sure it's some place in Canada.
I've also been keeping my eye on wdvax. I'm pretty sure there was not a tumor limit. But again it's phase 1. Last I read they were talking a sequel to wdvax where instead of minor surgery to get the med in us they use some type of goop.
There's also one that's supposed to be coming up in San francisco that would let him stay on keytruda and inject il12 in the visible tumors like I assume his lymph nodes. With just il12 alone yes 12 not 2 they saw significant response rates in distant non treated tumors. So I'm hoping with keytruda included they get awesome results. The other inject meds seem to exclude folks that have done treatments and they don't combine a systemic med so that one when it starts should be good. Granted some other injects meds seem better than il12.
Other than that there are the big 5 places where brystal Myers Squibb tries there stuff first like at MSK in New York. There they have things like pd1 and such and such. Like anti kir or anti lag and things like that. Yes some of those combos allow us treated folks.
also at md Anderson and Huntington and places are the virus trials. Where they take things like the common cold and herpes and things to cure our melanoma.
The university of Illinois at Chicago is starting phase 1 of something called pac1. I'm not sure of the logic behind how it is supposed to work but they did 10 years on animals mainly dogs.
washington university Siteman cancer center in my home of saint Louis has ERK which is phase1. higher up the Dna chain than the taf mek combo.
Also there is another med that can replace mekinist that does not cause the fevers but is a mek inhibitor like it.
Hopefully others can chime in for what else is out there. I know I'm very scared if my scan shows I need to leave keytruda for something else because that is really all I've found for those of us who have done the braf ipi pd1 treatments.
Artie
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- April 3, 2015 at 5:06 am
Sorry to hear they are giving up on keytruda after 12 doses. I've had 16 and get my next scan in less than 3 weeks. I've always had something growing so I'm hoping for a miracle of no growth this time. So I might be right beside your husband but right now I'm praying I'm not.
Anyway there are lots of things out there but mostly phase 1 stuff. Sooo it's a gamble. Til if he is strong enough to go through that treatment is probably a good option. I have no idea about international. However I think some royal place in Quebec I think has started til. I know for sure it's some place in Canada.
I've also been keeping my eye on wdvax. I'm pretty sure there was not a tumor limit. But again it's phase 1. Last I read they were talking a sequel to wdvax where instead of minor surgery to get the med in us they use some type of goop.
There's also one that's supposed to be coming up in San francisco that would let him stay on keytruda and inject il12 in the visible tumors like I assume his lymph nodes. With just il12 alone yes 12 not 2 they saw significant response rates in distant non treated tumors. So I'm hoping with keytruda included they get awesome results. The other inject meds seem to exclude folks that have done treatments and they don't combine a systemic med so that one when it starts should be good. Granted some other injects meds seem better than il12.
Other than that there are the big 5 places where brystal Myers Squibb tries there stuff first like at MSK in New York. There they have things like pd1 and such and such. Like anti kir or anti lag and things like that. Yes some of those combos allow us treated folks.
also at md Anderson and Huntington and places are the virus trials. Where they take things like the common cold and herpes and things to cure our melanoma.
The university of Illinois at Chicago is starting phase 1 of something called pac1. I'm not sure of the logic behind how it is supposed to work but they did 10 years on animals mainly dogs.
washington university Siteman cancer center in my home of saint Louis has ERK which is phase1. higher up the Dna chain than the taf mek combo.
Also there is another med that can replace mekinist that does not cause the fevers but is a mek inhibitor like it.
Hopefully others can chime in for what else is out there. I know I'm very scared if my scan shows I need to leave keytruda for something else because that is really all I've found for those of us who have done the braf ipi pd1 treatments.
Artie
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- April 3, 2015 at 5:06 am
Sorry to hear they are giving up on keytruda after 12 doses. I've had 16 and get my next scan in less than 3 weeks. I've always had something growing so I'm hoping for a miracle of no growth this time. So I might be right beside your husband but right now I'm praying I'm not.
Anyway there are lots of things out there but mostly phase 1 stuff. Sooo it's a gamble. Til if he is strong enough to go through that treatment is probably a good option. I have no idea about international. However I think some royal place in Quebec I think has started til. I know for sure it's some place in Canada.
I've also been keeping my eye on wdvax. I'm pretty sure there was not a tumor limit. But again it's phase 1. Last I read they were talking a sequel to wdvax where instead of minor surgery to get the med in us they use some type of goop.
There's also one that's supposed to be coming up in San francisco that would let him stay on keytruda and inject il12 in the visible tumors like I assume his lymph nodes. With just il12 alone yes 12 not 2 they saw significant response rates in distant non treated tumors. So I'm hoping with keytruda included they get awesome results. The other inject meds seem to exclude folks that have done treatments and they don't combine a systemic med so that one when it starts should be good. Granted some other injects meds seem better than il12.
Other than that there are the big 5 places where brystal Myers Squibb tries there stuff first like at MSK in New York. There they have things like pd1 and such and such. Like anti kir or anti lag and things like that. Yes some of those combos allow us treated folks.
also at md Anderson and Huntington and places are the virus trials. Where they take things like the common cold and herpes and things to cure our melanoma.
The university of Illinois at Chicago is starting phase 1 of something called pac1. I'm not sure of the logic behind how it is supposed to work but they did 10 years on animals mainly dogs.
washington university Siteman cancer center in my home of saint Louis has ERK which is phase1. higher up the Dna chain than the taf mek combo.
Also there is another med that can replace mekinist that does not cause the fevers but is a mek inhibitor like it.
Hopefully others can chime in for what else is out there. I know I'm very scared if my scan shows I need to leave keytruda for something else because that is really all I've found for those of us who have done the braf ipi pd1 treatments.
Artie
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- April 3, 2015 at 1:43 pm
So sorry for everything, Nadia. Artie gave you a pretty good breakdown. Anti-LAG3 may be something your husband can qualify for if the radiation gets the brain mets under control.
https://clinicaltrials.gov/ct2/show/NCT01968109
You could call one of the sites to make sure. But there is an arm that gives the drug to those who progressed both on ipi and anti-PD1.
Here's a post I wrote giving information on LAG-3 on our cancer cells and how anti-LAG3 might help….especially sequentially after ipi and anti-PD1, if you are interested.
Hang in there. Your husband is lucky to have you in his corner! Celeste
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- April 3, 2015 at 1:43 pm
So sorry for everything, Nadia. Artie gave you a pretty good breakdown. Anti-LAG3 may be something your husband can qualify for if the radiation gets the brain mets under control.
https://clinicaltrials.gov/ct2/show/NCT01968109
You could call one of the sites to make sure. But there is an arm that gives the drug to those who progressed both on ipi and anti-PD1.
Here's a post I wrote giving information on LAG-3 on our cancer cells and how anti-LAG3 might help….especially sequentially after ipi and anti-PD1, if you are interested.
Hang in there. Your husband is lucky to have you in his corner! Celeste
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- April 3, 2015 at 1:43 pm
So sorry for everything, Nadia. Artie gave you a pretty good breakdown. Anti-LAG3 may be something your husband can qualify for if the radiation gets the brain mets under control.
https://clinicaltrials.gov/ct2/show/NCT01968109
You could call one of the sites to make sure. But there is an arm that gives the drug to those who progressed both on ipi and anti-PD1.
Here's a post I wrote giving information on LAG-3 on our cancer cells and how anti-LAG3 might help….especially sequentially after ipi and anti-PD1, if you are interested.
Hang in there. Your husband is lucky to have you in his corner! Celeste
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- April 4, 2015 at 3:47 pm
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 for your kind words, it sure helps to feel you are not alone in this. Thank you for your ideas, I will definitely start doing my homework, and let you know what's the next step., as soon as we know something.-
- April 5, 2015 at 1:42 am
Hey Nadia,
Continuing Keytruda and adding radiation may be a very good move. Here are two posts that give data regarding that very thing:
Other thought: Some folks are taking BRAFi with anti-PD1. Tricky. Toxicity can be an issue.
Next thought: If you are taking BRAFi be sure your doc is combining it with a MEK inhibitor and possibly interval dosing. Oddly enough that combo and dosing pattern leads to increased effectiveness, decreased tumor work around and side effects. To take dabrafenib alone is no longer the best of care.
Final thought: Dr. Weber has been my oncologist for the past 5 years. I travel from Chattanooga to Tampa to see him. A pain in the butt for sure…but worth it.
Still think anti-LAG3 is an option if these other things do not come to pass or do not work out. I wish you well. C
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- April 5, 2015 at 1:42 am
Hey Nadia,
Continuing Keytruda and adding radiation may be a very good move. Here are two posts that give data regarding that very thing:
Other thought: Some folks are taking BRAFi with anti-PD1. Tricky. Toxicity can be an issue.
Next thought: If you are taking BRAFi be sure your doc is combining it with a MEK inhibitor and possibly interval dosing. Oddly enough that combo and dosing pattern leads to increased effectiveness, decreased tumor work around and side effects. To take dabrafenib alone is no longer the best of care.
Final thought: Dr. Weber has been my oncologist for the past 5 years. I travel from Chattanooga to Tampa to see him. A pain in the butt for sure…but worth it.
Still think anti-LAG3 is an option if these other things do not come to pass or do not work out. I wish you well. C
-
- April 5, 2015 at 1:42 am
Hey Nadia,
Continuing Keytruda and adding radiation may be a very good move. Here are two posts that give data regarding that very thing:
Other thought: Some folks are taking BRAFi with anti-PD1. Tricky. Toxicity can be an issue.
Next thought: If you are taking BRAFi be sure your doc is combining it with a MEK inhibitor and possibly interval dosing. Oddly enough that combo and dosing pattern leads to increased effectiveness, decreased tumor work around and side effects. To take dabrafenib alone is no longer the best of care.
Final thought: Dr. Weber has been my oncologist for the past 5 years. I travel from Chattanooga to Tampa to see him. A pain in the butt for sure…but worth it.
Still think anti-LAG3 is an option if these other things do not come to pass or do not work out. I wish you well. C
-
- April 4, 2015 at 3:47 pm
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 for your kind words, it sure helps to feel you are not alone in this. Thank you for your ideas, I will definitely start doing my homework, and let you know what's the next step., as soon as we know something. -
- April 4, 2015 at 3:47 pm
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 for your kind words, it sure helps to feel you are not alone in this. Thank you for your ideas, I will definitely start doing my homework, and let you know what's the next step., as soon as we know something. -
- April 5, 2015 at 7:15 pm
Hi Nadia,
I can talk a little about radiation and immunotherapy. I have tumors in liver, lungs and I had one in my gallbladder that got too big so the gallbladder was removed.
I enrolled in the RADVAX trial at the SCCA in Seattle. I had three intense doses of stereotactic body radiotherapy to the largest tumor on my lungs, which was 1.2 x 0.7cm at the time. As you may have already discovered through your research, there has been a so-called abscopal effect in some patients. The idea is that blasting a tumor releases antigens that the uninhibited immune system can recognize and attack.
The trial combined Yervoy, not Keytruda, with the radiation, but I was able to handle it quite well. However, I can't speak to whether or not the combination with Keytruda is more severe with regard to lung damage. The tumor that was zapped did decrease in size to 1.0 x 0.6cm. My remaining tumors stopped growing, but a new one started on my shoulder.
There is so much going on in the field of melanoma research its hard to navigate it all but I have found this board to be my best resource of all because there are so many knowledgeable people on it that speak English and not just melanomaese (hard to understand all the technical jargon).
One parting thought is that I am also enrolled in the TIL trial up here in Seattle. It is in two parts, the first being harvesting of the TIL cells from a resected tumor and the second being the actual induction of the lab grown cells. I think Dr. Rosenberg at NIH/NCI has gotten the best results to date, but the lead investigator of the trial here in Seattle was trained by Dr. Rosenberg. My cells were successfully harvested and are now sitting on ice (well, cryogenically frozen) for if and when I need them. You might want to find out a little bit more about TIL in Toronto (by the way that is my old stomping ground–I grew up in Belleville and went to school in Waterloo).
I wish you all the best!
– Paul
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- April 5, 2015 at 7:15 pm
Hi Nadia,
I can talk a little about radiation and immunotherapy. I have tumors in liver, lungs and I had one in my gallbladder that got too big so the gallbladder was removed.
I enrolled in the RADVAX trial at the SCCA in Seattle. I had three intense doses of stereotactic body radiotherapy to the largest tumor on my lungs, which was 1.2 x 0.7cm at the time. As you may have already discovered through your research, there has been a so-called abscopal effect in some patients. The idea is that blasting a tumor releases antigens that the uninhibited immune system can recognize and attack.
The trial combined Yervoy, not Keytruda, with the radiation, but I was able to handle it quite well. However, I can't speak to whether or not the combination with Keytruda is more severe with regard to lung damage. The tumor that was zapped did decrease in size to 1.0 x 0.6cm. My remaining tumors stopped growing, but a new one started on my shoulder.
There is so much going on in the field of melanoma research its hard to navigate it all but I have found this board to be my best resource of all because there are so many knowledgeable people on it that speak English and not just melanomaese (hard to understand all the technical jargon).
One parting thought is that I am also enrolled in the TIL trial up here in Seattle. It is in two parts, the first being harvesting of the TIL cells from a resected tumor and the second being the actual induction of the lab grown cells. I think Dr. Rosenberg at NIH/NCI has gotten the best results to date, but the lead investigator of the trial here in Seattle was trained by Dr. Rosenberg. My cells were successfully harvested and are now sitting on ice (well, cryogenically frozen) for if and when I need them. You might want to find out a little bit more about TIL in Toronto (by the way that is my old stomping ground–I grew up in Belleville and went to school in Waterloo).
I wish you all the best!
– Paul
-
- April 5, 2015 at 7:15 pm
Hi Nadia,
I can talk a little about radiation and immunotherapy. I have tumors in liver, lungs and I had one in my gallbladder that got too big so the gallbladder was removed.
I enrolled in the RADVAX trial at the SCCA in Seattle. I had three intense doses of stereotactic body radiotherapy to the largest tumor on my lungs, which was 1.2 x 0.7cm at the time. As you may have already discovered through your research, there has been a so-called abscopal effect in some patients. The idea is that blasting a tumor releases antigens that the uninhibited immune system can recognize and attack.
The trial combined Yervoy, not Keytruda, with the radiation, but I was able to handle it quite well. However, I can't speak to whether or not the combination with Keytruda is more severe with regard to lung damage. The tumor that was zapped did decrease in size to 1.0 x 0.6cm. My remaining tumors stopped growing, but a new one started on my shoulder.
There is so much going on in the field of melanoma research its hard to navigate it all but I have found this board to be my best resource of all because there are so many knowledgeable people on it that speak English and not just melanomaese (hard to understand all the technical jargon).
One parting thought is that I am also enrolled in the TIL trial up here in Seattle. It is in two parts, the first being harvesting of the TIL cells from a resected tumor and the second being the actual induction of the lab grown cells. I think Dr. Rosenberg at NIH/NCI has gotten the best results to date, but the lead investigator of the trial here in Seattle was trained by Dr. Rosenberg. My cells were successfully harvested and are now sitting on ice (well, cryogenically frozen) for if and when I need them. You might want to find out a little bit more about TIL in Toronto (by the way that is my old stomping ground–I grew up in Belleville and went to school in Waterloo).
I wish you all the best!
– Paul
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