Feeling like IL2 would have been better than Clinical Trial with PX866?

Are the trial meds working? For you? for others? You can quit a trial anytime you want to peruse other therapies, or do no therapy at all.

melanoma is so much more deadly than other cancers, it’s called the black beast. IL2 is some nasty stuff, and only has a response rate of 10-15% I believe. That means tumors shrank, stayed the same, or went away. There is a small minority with the immunotherapies that are disease free after many years. You will hear them referred to as NED – No Evidence of Disease. You will not hear “remission” or “cured” in melanoma because up until the last few years, almost everyone stage 4 died within a year.

Researchers are trying to help us live longer with trials, learn how to prolong and hopefully “cure” or bring melanoma to a manageable disease you can live with. PX866 they hope will make Zelboraf work longer. Many times, the side effects of Zel get better over time.

Any cancer treatment will probably leave your body damaged and maybe you can’t do some of the things you used to. There are people on Zel for years, and there are ways to treat the side effects. Like lowering Zel dosage to 3×2 or trying Megace ES for weight gain. What does the Dr say? Who is your Dr?

Hang in there. Push harder for more help with side effects if you need it. There are lots of people on here long term survivors, one therapy works for one, but others will die. So much still to be learned. There is nothing wrong with researching a plan#2, and there is lots of research going on. I started Zel 10 mos ago. It saved my life and is giving me extra time with my family.

Good luck to you!

Are the trial meds working? For you? for others? You can quit a trial anytime you want to peruse other therapies, or do no therapy at all.

melanoma is so much more deadly than other cancers, it’s called the black beast. IL2 is some nasty stuff, and only has a response rate of 10-15% I believe. That means tumors shrank, stayed the same, or went away. There is a small minority with the immunotherapies that are disease free after many years. You will hear them referred to as NED – No Evidence of Disease. You will not hear “remission” or “cured” in melanoma because up until the last few years, almost everyone stage 4 died within a year.

Researchers are trying to help us live longer with trials, learn how to prolong and hopefully “cure” or bring melanoma to a manageable disease you can live with. PX866 they hope will make Zelboraf work longer. Many times, the side effects of Zel get better over time.

Any cancer treatment will probably leave your body damaged and maybe you can’t do some of the things you used to. There are people on Zel for years, and there are ways to treat the side effects. Like lowering Zel dosage to 3×2 or trying Megace ES for weight gain. What does the Dr say? Who is your Dr?

Hang in there. Push harder for more help with side effects if you need it. There are lots of people on here long term survivors, one therapy works for one, but others will die. So much still to be learned. There is nothing wrong with researching a plan#2, and there is lots of research going on. I started Zel 10 mos ago. It saved my life and is giving me extra time with my family.

Good luck to you!

Are the trial meds working? For you? for others? You can quit a trial anytime you want to peruse other therapies, or do no therapy at all.

melanoma is so much more deadly than other cancers, it’s called the black beast. IL2 is some nasty stuff, and only has a response rate of 10-15% I believe. That means tumors shrank, stayed the same, or went away. There is a small minority with the immunotherapies that are disease free after many years. You will hear them referred to as NED – No Evidence of Disease. You will not hear “remission” or “cured” in melanoma because up until the last few years, almost everyone stage 4 died within a year.

Researchers are trying to help us live longer with trials, learn how to prolong and hopefully “cure” or bring melanoma to a manageable disease you can live with. PX866 they hope will make Zelboraf work longer. Many times, the side effects of Zel get better over time.

Any cancer treatment will probably leave your body damaged and maybe you can’t do some of the things you used to. There are people on Zel for years, and there are ways to treat the side effects. Like lowering Zel dosage to 3×2 or trying Megace ES for weight gain. What does the Dr say? Who is your Dr?

Hang in there. Push harder for more help with side effects if you need it. There are lots of people on here long term survivors, one therapy works for one, but others will die. So much still to be learned. There is nothing wrong with researching a plan#2, and there is lots of research going on. I started Zel 10 mos ago. It saved my life and is giving me extra time with my family.

Good luck to you!

Stick with the trial as long as there is no progression.  I don't know know what PX866 is, but I'm guessing this is a trial to see if combining it with Zelboraf (a BRAF inhibitor) gives a longer term benefit than Zelboraf alone.  I am on a trial combining a BRAF inhibitor with MEK, also to see if it is better than BRAF alone. 

Being in a trial means participating in an experiment, with no guarantees.  Perhaps the disease will progress in several months, but perhaps the drug combination will have a more lasting effect.  I know this doesn't sound like a great bargain, but this is melanoma – a very tricky disease.  We don't know beforehand which treatment can give a particular patient a lasting response.  As was already said, IL2 works on only about 10% of patients (that's for partial response, only 6% have a long lasting total response).  IL2 can cause longterm damage to the body (such as kidney damage).

So my advice is to stick with what works, for as long as it works.  If it stops working, move on to something else.   Hopefully by then there will be more options.

Best wishes,

Harry

 

Stick with the trial as long as there is no progression.  I don't know know what PX866 is, but I'm guessing this is a trial to see if combining it with Zelboraf (a BRAF inhibitor) gives a longer term benefit than Zelboraf alone.  I am on a trial combining a BRAF inhibitor with MEK, also to see if it is better than BRAF alone. 

Being in a trial means participating in an experiment, with no guarantees.  Perhaps the disease will progress in several months, but perhaps the drug combination will have a more lasting effect.  I know this doesn't sound like a great bargain, but this is melanoma – a very tricky disease.  We don't know beforehand which treatment can give a particular patient a lasting response.  As was already said, IL2 works on only about 10% of patients (that's for partial response, only 6% have a long lasting total response).  IL2 can cause longterm damage to the body (such as kidney damage).

So my advice is to stick with what works, for as long as it works.  If it stops working, move on to something else.   Hopefully by then there will be more options.

Best wishes,

Harry

 

Stick with the trial as long as there is no progression.  I don't know know what PX866 is, but I'm guessing this is a trial to see if combining it with Zelboraf (a BRAF inhibitor) gives a longer term benefit than Zelboraf alone.  I am on a trial combining a BRAF inhibitor with MEK, also to see if it is better than BRAF alone. 

Being in a trial means participating in an experiment, with no guarantees.  Perhaps the disease will progress in several months, but perhaps the drug combination will have a more lasting effect.  I know this doesn't sound like a great bargain, but this is melanoma – a very tricky disease.  We don't know beforehand which treatment can give a particular patient a lasting response.  As was already said, IL2 works on only about 10% of patients (that's for partial response, only 6% have a long lasting total response).  IL2 can cause longterm damage to the body (such as kidney damage).

So my advice is to stick with what works, for as long as it works.  If it stops working, move on to something else.   Hopefully by then there will be more options.

Best wishes,

Harry

 

Yeah for the trial working! I’d stick with whatever is working for now. Melanoma stinks, there is no cure and no remission. Occasionally you find the right combination that gets you to NED, but it’s not remission. My husband has been battling for 2 years and has been NED for almost a year (he is 39 and takes more daily medication than my grandma:)), but we know it’s temporary…whether for weeks, months, or years. He will always be undergoing treatment, always have scans every 2-3 months, and always live with the fear of when it will start to grow again. It’s not like other cancers that the treatment is over. All the treatments seem to be simply life extending. It takes awhile, but you eventually learn to live with that. It stinks, it’s incredibly hard, but you do eventually learn to live one day at a time. Make sure to work with a melanoma specialist…they can manage the side effects. Fortunately, you still have Yervoy and Zelboraf to try when the trial stops working.

Yeah for the trial working! I’d stick with whatever is working for now. Melanoma stinks, there is no cure and no remission. Occasionally you find the right combination that gets you to NED, but it’s not remission. My husband has been battling for 2 years and has been NED for almost a year (he is 39 and takes more daily medication than my grandma:)), but we know it’s temporary…whether for weeks, months, or years. He will always be undergoing treatment, always have scans every 2-3 months, and always live with the fear of when it will start to grow again. It’s not like other cancers that the treatment is over. All the treatments seem to be simply life extending. It takes awhile, but you eventually learn to live with that. It stinks, it’s incredibly hard, but you do eventually learn to live one day at a time. Make sure to work with a melanoma specialist…they can manage the side effects. Fortunately, you still have Yervoy and Zelboraf to try when the trial stops working.

Yeah for the trial working! I’d stick with whatever is working for now. Melanoma stinks, there is no cure and no remission. Occasionally you find the right combination that gets you to NED, but it’s not remission. My husband has been battling for 2 years and has been NED for almost a year (he is 39 and takes more daily medication than my grandma:)), but we know it’s temporary…whether for weeks, months, or years. He will always be undergoing treatment, always have scans every 2-3 months, and always live with the fear of when it will start to grow again. It’s not like other cancers that the treatment is over. All the treatments seem to be simply life extending. It takes awhile, but you eventually learn to live with that. It stinks, it’s incredibly hard, but you do eventually learn to live one day at a time. Make sure to work with a melanoma specialist…they can manage the side effects. Fortunately, you still have Yervoy and Zelboraf to try when the trial stops working.

". It's not like other cancers that the treatment is over "

 

why is it so vastly different from other cancers?  i just don't get it, what makes it the absolute worst kind of cancer you can get, what makes it so different from other cancers?

". It's not like other cancers that the treatment is over "

 

why is it so vastly different from other cancers?  i just don't get it, what makes it the absolute worst kind of cancer you can get, what makes it so different from other cancers?

". It's not like other cancers that the treatment is over "

 

why is it so vastly different from other cancers?  i just don't get it, what makes it the absolute worst kind of cancer you can get, what makes it so different from other cancers?

i thought the thing with pancreatic was more that there are no early symptoms, so by the time it's realized it's very advanced/late/progressed

 

i thought i heard had steve jobs had surgery earlier on instead of trying alternative things, he might have survived

i thought the thing with pancreatic was more that there are no early symptoms, so by the time it's realized it's very advanced/late/progressed

 

i thought i heard had steve jobs had surgery earlier on instead of trying alternative things, he might have survived

i thought the thing with pancreatic was more that there are no early symptoms, so by the time it's realized it's very advanced/late/progressed

 

i thought i heard had steve jobs had surgery earlier on instead of trying alternative things, he might have survived