› Forums › General Melanoma Community › Zelboraf / IL-2 trial advice
- This topic has 78 replies, 9 voices, and was last updated 10 years, 4 months ago by
Kim K.
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- December 4, 2013 at 8:42 pm
My daughter is stage 4 and currently is enrolled in the phase 4 Zelboraf / IL-2 trial. Last week we were excited to receive confirmation that the single tumor in her lung is shrinking on the Zelboraf arm. After six months of coughing, Z stopped it in 2-3 weeks. We need the collective wisdom of this community now as we are getting cold feet about the IL-2 arm which is scheduled for the week before and the week after Christmas. On this site, I have heard IL-2 referred to as a last resort. I have also seen the 6% of full responders believing in it and the 94% that didn't respond calling the experience a nightmare. Her oncologist says it is the first resort, because of your age and good health. On paper the trial makes sense, as we know that the Zelboraf response is not durable and a combo approach is needed to keep it down. It is our understanding that surgery is an option for her, but her Oncs sold us on going the systemic route from the beginning. Not sure if another reputable melanoma clinic would necessarily agree. Any thoughts on this trial, or other directions with the newer drugs we should consider for the combo treatment?
Thanks in advance.
- Replies
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- December 5, 2013 at 12:05 am
Brad, I can only offer my personal opinion and experience. For me IL-2 was a very demanding and difficult treatment that did not work. In hindsight though, I am glad I did it because I needed unsuccessful treatment to get into the phase 2 trial for what is now Zelboraf. (Truthfully, it was not part of a plan, just dumb luck.)
As to my experience, I know I am an anomaly, but today I start my 46th month on Zelboraf.
I wish you and your daughter the best of luck.
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- December 5, 2013 at 12:05 am
Brad, I can only offer my personal opinion and experience. For me IL-2 was a very demanding and difficult treatment that did not work. In hindsight though, I am glad I did it because I needed unsuccessful treatment to get into the phase 2 trial for what is now Zelboraf. (Truthfully, it was not part of a plan, just dumb luck.)
As to my experience, I know I am an anomaly, but today I start my 46th month on Zelboraf.
I wish you and your daughter the best of luck.
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- December 5, 2013 at 2:18 pm
Dick, Thank you for your feedback. Very helpful and so happy to hear that Zelboraf has been working so well for you. It was amazing to see how fast it worked in my daughters case and the profound physical and mental lift it gave her when she was able to stop coughing and sleep without codeine was wonderful. Ultimately my daughter will have to make the decision regarding the trial, and as the thoughtful answers below suggest, there are a lot of difficult choices. Best, Brad
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- December 5, 2013 at 2:18 pm
Dick, Thank you for your feedback. Very helpful and so happy to hear that Zelboraf has been working so well for you. It was amazing to see how fast it worked in my daughters case and the profound physical and mental lift it gave her when she was able to stop coughing and sleep without codeine was wonderful. Ultimately my daughter will have to make the decision regarding the trial, and as the thoughtful answers below suggest, there are a lot of difficult choices. Best, Brad
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- December 5, 2013 at 2:18 pm
Dick, Thank you for your feedback. Very helpful and so happy to hear that Zelboraf has been working so well for you. It was amazing to see how fast it worked in my daughters case and the profound physical and mental lift it gave her when she was able to stop coughing and sleep without codeine was wonderful. Ultimately my daughter will have to make the decision regarding the trial, and as the thoughtful answers below suggest, there are a lot of difficult choices. Best, Brad
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- December 5, 2013 at 12:05 am
Brad, I can only offer my personal opinion and experience. For me IL-2 was a very demanding and difficult treatment that did not work. In hindsight though, I am glad I did it because I needed unsuccessful treatment to get into the phase 2 trial for what is now Zelboraf. (Truthfully, it was not part of a plan, just dumb luck.)
As to my experience, I know I am an anomaly, but today I start my 46th month on Zelboraf.
I wish you and your daughter the best of luck.
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- December 5, 2013 at 12:18 am
Thank you to your daughter for entering a trial. It is so important to help advance research forward. I personally have never heard IL2 referred to as a last resort. It is a rough treatment and by the time a patient gets to last resort I'm not so sure many people could tolerate it.
I know people who definitely used it as a first choice – young and healthy. Also, some people stick with surgery as long as possible. There are still so many unknowns and many opinions on sequencing of treatments. Also we are still searching for a cure that works for everyone. Check out the papers issued from ASCO this year and The Society for Melanoma Research. If you don't trust your oncologist , find a melanoma specialist at one of the centers of excellence listed here under Breakthrough Consortium.
Research, make the best decision you can, and don't look back.
Amy
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- December 5, 2013 at 6:00 pm
Thank you Amy for your advice. We are at one of the Centers of Excellence. Our biggest problem with our oncologist, who leads the trial, is communication. We may have spoken to him personallty 4 times since she was diagnosed 3B two years ago to her current stage 4. He may be so busy because he has many trials going on concurrently. Anyway, not feeling you have a "relationship" with your doctor is disappointing. We have no reason to doubt the clinical expertise, but there are undoubtably more options than we have been presented.
You are right that as a last resort, no one would qualify. We were at a similar crossroads 2 years ago with interferon and chose not to do it. We never looked back. Since we are in the middle of the Zelboraf arm of the trial, quitting now seems wrong. That said, she needs to do the best thing for her and perhaps we need to step back and reevaluate.
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- December 6, 2013 at 7:20 pm
She's seen her oncologist only 4 FOUR times. I had to reread that one. Completely unacceptable. I see mine more than half the time I'm in the clinic. Speak up and tell them this is unacceptable!,
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- December 6, 2013 at 7:20 pm
She's seen her oncologist only 4 FOUR times. I had to reread that one. Completely unacceptable. I see mine more than half the time I'm in the clinic. Speak up and tell them this is unacceptable!,
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- December 6, 2013 at 7:20 pm
She's seen her oncologist only 4 FOUR times. I had to reread that one. Completely unacceptable. I see mine more than half the time I'm in the clinic. Speak up and tell them this is unacceptable!,
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- December 5, 2013 at 6:00 pm
Thank you Amy for your advice. We are at one of the Centers of Excellence. Our biggest problem with our oncologist, who leads the trial, is communication. We may have spoken to him personallty 4 times since she was diagnosed 3B two years ago to her current stage 4. He may be so busy because he has many trials going on concurrently. Anyway, not feeling you have a "relationship" with your doctor is disappointing. We have no reason to doubt the clinical expertise, but there are undoubtably more options than we have been presented.
You are right that as a last resort, no one would qualify. We were at a similar crossroads 2 years ago with interferon and chose not to do it. We never looked back. Since we are in the middle of the Zelboraf arm of the trial, quitting now seems wrong. That said, she needs to do the best thing for her and perhaps we need to step back and reevaluate.
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- December 5, 2013 at 6:00 pm
Thank you Amy for your advice. We are at one of the Centers of Excellence. Our biggest problem with our oncologist, who leads the trial, is communication. We may have spoken to him personallty 4 times since she was diagnosed 3B two years ago to her current stage 4. He may be so busy because he has many trials going on concurrently. Anyway, not feeling you have a "relationship" with your doctor is disappointing. We have no reason to doubt the clinical expertise, but there are undoubtably more options than we have been presented.
You are right that as a last resort, no one would qualify. We were at a similar crossroads 2 years ago with interferon and chose not to do it. We never looked back. Since we are in the middle of the Zelboraf arm of the trial, quitting now seems wrong. That said, she needs to do the best thing for her and perhaps we need to step back and reevaluate.
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- December 5, 2013 at 12:18 am
Thank you to your daughter for entering a trial. It is so important to help advance research forward. I personally have never heard IL2 referred to as a last resort. It is a rough treatment and by the time a patient gets to last resort I'm not so sure many people could tolerate it.
I know people who definitely used it as a first choice – young and healthy. Also, some people stick with surgery as long as possible. There are still so many unknowns and many opinions on sequencing of treatments. Also we are still searching for a cure that works for everyone. Check out the papers issued from ASCO this year and The Society for Melanoma Research. If you don't trust your oncologist , find a melanoma specialist at one of the centers of excellence listed here under Breakthrough Consortium.
Research, make the best decision you can, and don't look back.
Amy
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- December 5, 2013 at 12:18 am
Thank you to your daughter for entering a trial. It is so important to help advance research forward. I personally have never heard IL2 referred to as a last resort. It is a rough treatment and by the time a patient gets to last resort I'm not so sure many people could tolerate it.
I know people who definitely used it as a first choice – young and healthy. Also, some people stick with surgery as long as possible. There are still so many unknowns and many opinions on sequencing of treatments. Also we are still searching for a cure that works for everyone. Check out the papers issued from ASCO this year and The Society for Melanoma Research. If you don't trust your oncologist , find a melanoma specialist at one of the centers of excellence listed here under Breakthrough Consortium.
Research, make the best decision you can, and don't look back.
Amy
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- December 5, 2013 at 12:27 am
Brad, I think that your last statement was the best– at the very least your daughter should consult with a melanoma Center of Excellence before starting IL-2. I wish she had done that before starting any treatment (which is what I advise every Stage IV patient) but now is as good a time as any.
From what you wrote, it seems as though your daughter has only one tumor and it is in her lung. Thankfully, she responded to the Zelboraf (good to know for the future) and the tumor shrank. So why not remove it surgically? Just get it the hell out of there? Am I missing something here?
If her doctors are afraid that the melanoma might spread someday, cross that bridge when you come to it. She can always take Zelboraf again, if necessary. Or dabrafenib + MEK which often works better and with fewer side effects than Zelboraf alone. There are also a couple of immune-based therapies like Yervoy and anti-PD1. They take several months to work but their effect lasts a longer time. They are good for when one is at high risk for recurrance or when one has a low tumor burden. Other drugs and immune-based treatments are in the pipeline and may be in clinical trials and/or commiercially available if and when the time comes that your daughter needs them.
So if your daughter only has one tumor, by all means find out about VATS surgery and then get a second opinion at a melanoma specialty center before you make your decision. Don't feel badly about dropping out of the trial– there are (unfortunately) plenty of other melanoma patients to take her place.
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- December 5, 2013 at 11:05 pm
Our oncologist, who is well regarded and at melanoma specialty center of excellence, seemed to decide against surgery even before he knew that there was only one tumor in her lung. The reason not to do surgery was, "we don't want to play wack-a-mole with this". Better to take our best shot systemically with IL-2 since she is young and healthy. We can always do surgery later if this doesn't work. Or move on to other systemic treatments. By the time the full scans were done, I learned on this site about three trials opening there. Our doc strongly recommended this one because of the location of the tumor and speed with which Zel works. In the meantime, they scheduled a light therapy treatment ,PDT, which used low level laser light to burn the tumor from the airway. This was a very interesting approach, but done ONLY to give her relief from coughing. Ultimately it was only partially effective, and by the time we were finished, 3 months had gone by since diagonsis. That is when it dawned on us that if we had been offered VATS as an option that she could have been relieved months early, and be NED at this time. Now that we have started this trial, she is no longer treatment naive and not eligible for the PD1/ IPI sequencing trial currently going on there. There is so little time to learn everything you need to know to chose and challenge treatment options. I have learned more from people like you on this blog than anywhere else. Your insights and patience are really appreciated. Brad
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- December 5, 2013 at 11:37 pm
Brad, I wanted to send you a private message but I can't because you have not filled out your profile. When you get a chance, please click on your name and at least fill in your email address so we can send you private messages.
In the meanwhile, based on everything you have said about your daughter's oncologist and treatment history, I repeat what I said before– get a second opinion (at a different melanoma specialty clinic) before making any decisions.
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- December 5, 2013 at 11:37 pm
Brad, I wanted to send you a private message but I can't because you have not filled out your profile. When you get a chance, please click on your name and at least fill in your email address so we can send you private messages.
In the meanwhile, based on everything you have said about your daughter's oncologist and treatment history, I repeat what I said before– get a second opinion (at a different melanoma specialty clinic) before making any decisions.
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- December 5, 2013 at 11:37 pm
Brad, I wanted to send you a private message but I can't because you have not filled out your profile. When you get a chance, please click on your name and at least fill in your email address so we can send you private messages.
In the meanwhile, based on everything you have said about your daughter's oncologist and treatment history, I repeat what I said before– get a second opinion (at a different melanoma specialty clinic) before making any decisions.
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- December 5, 2013 at 11:05 pm
Our oncologist, who is well regarded and at melanoma specialty center of excellence, seemed to decide against surgery even before he knew that there was only one tumor in her lung. The reason not to do surgery was, "we don't want to play wack-a-mole with this". Better to take our best shot systemically with IL-2 since she is young and healthy. We can always do surgery later if this doesn't work. Or move on to other systemic treatments. By the time the full scans were done, I learned on this site about three trials opening there. Our doc strongly recommended this one because of the location of the tumor and speed with which Zel works. In the meantime, they scheduled a light therapy treatment ,PDT, which used low level laser light to burn the tumor from the airway. This was a very interesting approach, but done ONLY to give her relief from coughing. Ultimately it was only partially effective, and by the time we were finished, 3 months had gone by since diagonsis. That is when it dawned on us that if we had been offered VATS as an option that she could have been relieved months early, and be NED at this time. Now that we have started this trial, she is no longer treatment naive and not eligible for the PD1/ IPI sequencing trial currently going on there. There is so little time to learn everything you need to know to chose and challenge treatment options. I have learned more from people like you on this blog than anywhere else. Your insights and patience are really appreciated. Brad
-
- December 5, 2013 at 11:05 pm
Our oncologist, who is well regarded and at melanoma specialty center of excellence, seemed to decide against surgery even before he knew that there was only one tumor in her lung. The reason not to do surgery was, "we don't want to play wack-a-mole with this". Better to take our best shot systemically with IL-2 since she is young and healthy. We can always do surgery later if this doesn't work. Or move on to other systemic treatments. By the time the full scans were done, I learned on this site about three trials opening there. Our doc strongly recommended this one because of the location of the tumor and speed with which Zel works. In the meantime, they scheduled a light therapy treatment ,PDT, which used low level laser light to burn the tumor from the airway. This was a very interesting approach, but done ONLY to give her relief from coughing. Ultimately it was only partially effective, and by the time we were finished, 3 months had gone by since diagonsis. That is when it dawned on us that if we had been offered VATS as an option that she could have been relieved months early, and be NED at this time. Now that we have started this trial, she is no longer treatment naive and not eligible for the PD1/ IPI sequencing trial currently going on there. There is so little time to learn everything you need to know to chose and challenge treatment options. I have learned more from people like you on this blog than anywhere else. Your insights and patience are really appreciated. Brad
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- December 5, 2013 at 12:27 am
Brad, I think that your last statement was the best– at the very least your daughter should consult with a melanoma Center of Excellence before starting IL-2. I wish she had done that before starting any treatment (which is what I advise every Stage IV patient) but now is as good a time as any.
From what you wrote, it seems as though your daughter has only one tumor and it is in her lung. Thankfully, she responded to the Zelboraf (good to know for the future) and the tumor shrank. So why not remove it surgically? Just get it the hell out of there? Am I missing something here?
If her doctors are afraid that the melanoma might spread someday, cross that bridge when you come to it. She can always take Zelboraf again, if necessary. Or dabrafenib + MEK which often works better and with fewer side effects than Zelboraf alone. There are also a couple of immune-based therapies like Yervoy and anti-PD1. They take several months to work but their effect lasts a longer time. They are good for when one is at high risk for recurrance or when one has a low tumor burden. Other drugs and immune-based treatments are in the pipeline and may be in clinical trials and/or commiercially available if and when the time comes that your daughter needs them.
So if your daughter only has one tumor, by all means find out about VATS surgery and then get a second opinion at a melanoma specialty center before you make your decision. Don't feel badly about dropping out of the trial– there are (unfortunately) plenty of other melanoma patients to take her place.
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- December 5, 2013 at 12:27 am
Brad, I think that your last statement was the best– at the very least your daughter should consult with a melanoma Center of Excellence before starting IL-2. I wish she had done that before starting any treatment (which is what I advise every Stage IV patient) but now is as good a time as any.
From what you wrote, it seems as though your daughter has only one tumor and it is in her lung. Thankfully, she responded to the Zelboraf (good to know for the future) and the tumor shrank. So why not remove it surgically? Just get it the hell out of there? Am I missing something here?
If her doctors are afraid that the melanoma might spread someday, cross that bridge when you come to it. She can always take Zelboraf again, if necessary. Or dabrafenib + MEK which often works better and with fewer side effects than Zelboraf alone. There are also a couple of immune-based therapies like Yervoy and anti-PD1. They take several months to work but their effect lasts a longer time. They are good for when one is at high risk for recurrance or when one has a low tumor burden. Other drugs and immune-based treatments are in the pipeline and may be in clinical trials and/or commiercially available if and when the time comes that your daughter needs them.
So if your daughter only has one tumor, by all means find out about VATS surgery and then get a second opinion at a melanoma specialty center before you make your decision. Don't feel badly about dropping out of the trial– there are (unfortunately) plenty of other melanoma patients to take her place.
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- December 5, 2013 at 3:22 am
6% is the cure rate…not response rate. My oncologist think it's skewed as well…il-2 has it's place and combo therapy may be a good route. Not sure if Jimmy B is on here but he has done extensive research on il2 and if I'm not mistaken doing yervoy followed by il2 should have been looked at long ago….guessing same for zel.
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- December 5, 2013 at 3:22 am
6% is the cure rate…not response rate. My oncologist think it's skewed as well…il-2 has it's place and combo therapy may be a good route. Not sure if Jimmy B is on here but he has done extensive research on il2 and if I'm not mistaken doing yervoy followed by il2 should have been looked at long ago….guessing same for zel.
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- December 5, 2013 at 4:13 am
Brad, I strongly suggest that you read this recent article about the recommended sequence of treatmetns for melanoma. http://www.nature.com/nrclinonc/journal/v10/n10/full/nrclinonc.2013.153.html
Note that the article only refers to current FDA approved treatments, not anything still in clinical trials like anti-PD1.
You will see that for Stage IV melanoma, if all of the tumors can be surgically removed the panel recommends surgery as the first treatment. If they can't be surgically removed, they recommend immune-based therapies first and if the BRAF mutation is present, BRAF inhibitors last. For the immune-based therapies, they recommend IL-2 first. If that doesn't work, try ipi. The reason the panel recommended IL-2 first is that IL-2 is a rough treatment to go through so it's better to do it first while the patient is still relatively strong and healthy. Furthermore, they had no idea what the interaction would be between IL-2 and ipi– if they give ipi first it might (might) worsen the side effects of IL-2. So they recommended IL-2 first.
I suspect that the clilnical trial your daughter is on is following these guidelines.
What confuses me is that Zelboraf is a chemcial that binds to a protein inside the melanoma cells. IL-2 is essentially a hormone that stimulates the immune system. I don't see any way that IL-2 could make the Zelboraf work better or visa versa. IL-2 + ipi or IL-2 + anti-PD1 might be good because they are all immune-realted. But IL-2 + Zelboraf? Confusing.
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- December 5, 2013 at 4:13 am
Brad, I strongly suggest that you read this recent article about the recommended sequence of treatmetns for melanoma. http://www.nature.com/nrclinonc/journal/v10/n10/full/nrclinonc.2013.153.html
Note that the article only refers to current FDA approved treatments, not anything still in clinical trials like anti-PD1.
You will see that for Stage IV melanoma, if all of the tumors can be surgically removed the panel recommends surgery as the first treatment. If they can't be surgically removed, they recommend immune-based therapies first and if the BRAF mutation is present, BRAF inhibitors last. For the immune-based therapies, they recommend IL-2 first. If that doesn't work, try ipi. The reason the panel recommended IL-2 first is that IL-2 is a rough treatment to go through so it's better to do it first while the patient is still relatively strong and healthy. Furthermore, they had no idea what the interaction would be between IL-2 and ipi– if they give ipi first it might (might) worsen the side effects of IL-2. So they recommended IL-2 first.
I suspect that the clilnical trial your daughter is on is following these guidelines.
What confuses me is that Zelboraf is a chemcial that binds to a protein inside the melanoma cells. IL-2 is essentially a hormone that stimulates the immune system. I don't see any way that IL-2 could make the Zelboraf work better or visa versa. IL-2 + ipi or IL-2 + anti-PD1 might be good because they are all immune-realted. But IL-2 + Zelboraf? Confusing.
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- December 5, 2013 at 9:55 am
POW, I'm no scientist, but I believe that the theory behind combining targeted therapy and immunotherapy goes something like this–by inhibiting BRAF and the ability of the cells to multiply, targeted therapy kills off tumors which release antigens (or whatever) into the bloodstream, etc. This enhances the odds that the immune system will recognize the tumors as foreign bodies, etc. and attack. By adding immunotherapy, you are ramping up the immune system–thereby bettering the odds of this occurring. This sounds like a good trial to me. They seem to be testing whether Zel will enhance the effectiveness of IL-2 (rather than using Zel as an initial treatment for someone with a low tumor burden, which would be at odds with the current thinking as you've stated). Easy for me to say, however as I haven't experienced IL-2.
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- December 5, 2013 at 9:55 am
POW, I'm no scientist, but I believe that the theory behind combining targeted therapy and immunotherapy goes something like this–by inhibiting BRAF and the ability of the cells to multiply, targeted therapy kills off tumors which release antigens (or whatever) into the bloodstream, etc. This enhances the odds that the immune system will recognize the tumors as foreign bodies, etc. and attack. By adding immunotherapy, you are ramping up the immune system–thereby bettering the odds of this occurring. This sounds like a good trial to me. They seem to be testing whether Zel will enhance the effectiveness of IL-2 (rather than using Zel as an initial treatment for someone with a low tumor burden, which would be at odds with the current thinking as you've stated). Easy for me to say, however as I haven't experienced IL-2.
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- December 5, 2013 at 12:52 pm
Hi, Mat-
Your suggestion makes sense. I guess it's possible that dead melanoma cell debris will release more antigens for the IL-2 activated immune cells to respond to.
Your post prompted me to look up this clinical trial just to satisfy my curiousity. Prometheus Laboratories acquired the sole rights to manufacture and market IL-2 (which they call Proleukin) 3 years ago. They are currently sponoring 2 melanoma clinical trials called "Proclivity 01" and "Proclivity 02". Proclivity 1 is studying the effect of using Proleukin with vermurafenib (Zelboraf); Proclivity 2 is studying using Proleukin with ipilumimab (Yervoy). These are both Phase IV trials, which means the drug(s) involved are already FDA approved but either the FDA wants more data or the manufacturer wants to see if an approved drug will work for other diseases or conditions than the FDA originally approved.
I think these clinical trials are a good idea. It will be very helpful to know if IL-2 increases the effectiveness or Zelboraf and/or Yervoy. The only concern I have in this particular case is if Brad's daughter only has one tumor and it could be surgically removed, I think it would be better for her to have it removed than leave it in there and see what happens.
I am not a doctor– I'm certainly not Brad's daughter's doctor– so there may be other factors going on here that I am not aware of. But if the situation is what I think it is, I'd have the surgery.
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- December 5, 2013 at 12:52 pm
Hi, Mat-
Your suggestion makes sense. I guess it's possible that dead melanoma cell debris will release more antigens for the IL-2 activated immune cells to respond to.
Your post prompted me to look up this clinical trial just to satisfy my curiousity. Prometheus Laboratories acquired the sole rights to manufacture and market IL-2 (which they call Proleukin) 3 years ago. They are currently sponoring 2 melanoma clinical trials called "Proclivity 01" and "Proclivity 02". Proclivity 1 is studying the effect of using Proleukin with vermurafenib (Zelboraf); Proclivity 2 is studying using Proleukin with ipilumimab (Yervoy). These are both Phase IV trials, which means the drug(s) involved are already FDA approved but either the FDA wants more data or the manufacturer wants to see if an approved drug will work for other diseases or conditions than the FDA originally approved.
I think these clinical trials are a good idea. It will be very helpful to know if IL-2 increases the effectiveness or Zelboraf and/or Yervoy. The only concern I have in this particular case is if Brad's daughter only has one tumor and it could be surgically removed, I think it would be better for her to have it removed than leave it in there and see what happens.
I am not a doctor– I'm certainly not Brad's daughter's doctor– so there may be other factors going on here that I am not aware of. But if the situation is what I think it is, I'd have the surgery.
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- December 5, 2013 at 12:52 pm
Hi, Mat-
Your suggestion makes sense. I guess it's possible that dead melanoma cell debris will release more antigens for the IL-2 activated immune cells to respond to.
Your post prompted me to look up this clinical trial just to satisfy my curiousity. Prometheus Laboratories acquired the sole rights to manufacture and market IL-2 (which they call Proleukin) 3 years ago. They are currently sponoring 2 melanoma clinical trials called "Proclivity 01" and "Proclivity 02". Proclivity 1 is studying the effect of using Proleukin with vermurafenib (Zelboraf); Proclivity 2 is studying using Proleukin with ipilumimab (Yervoy). These are both Phase IV trials, which means the drug(s) involved are already FDA approved but either the FDA wants more data or the manufacturer wants to see if an approved drug will work for other diseases or conditions than the FDA originally approved.
I think these clinical trials are a good idea. It will be very helpful to know if IL-2 increases the effectiveness or Zelboraf and/or Yervoy. The only concern I have in this particular case is if Brad's daughter only has one tumor and it could be surgically removed, I think it would be better for her to have it removed than leave it in there and see what happens.
I am not a doctor– I'm certainly not Brad's daughter's doctor– so there may be other factors going on here that I am not aware of. But if the situation is what I think it is, I'd have the surgery.
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- December 5, 2013 at 9:55 am
POW, I'm no scientist, but I believe that the theory behind combining targeted therapy and immunotherapy goes something like this–by inhibiting BRAF and the ability of the cells to multiply, targeted therapy kills off tumors which release antigens (or whatever) into the bloodstream, etc. This enhances the odds that the immune system will recognize the tumors as foreign bodies, etc. and attack. By adding immunotherapy, you are ramping up the immune system–thereby bettering the odds of this occurring. This sounds like a good trial to me. They seem to be testing whether Zel will enhance the effectiveness of IL-2 (rather than using Zel as an initial treatment for someone with a low tumor burden, which would be at odds with the current thinking as you've stated). Easy for me to say, however as I haven't experienced IL-2.
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- December 6, 2013 at 12:37 pm
You make many really great points here. We are now realizing that surgery wasn't given a fair hearing before being guided into this trial and feel trapped by the timelines of its protocol that is forcing us into the hospital at Christmas. We are concerned that the IL2 side effects may be worse when combined with Zelboraf and the idea of being in a teaching hospital during Christmas and New Years holidays has us very worried. After all of this excellent feedback, what would seem like a logical solution would be this– 1) leave the trial immediately.2) stay on Zelboraf since it it working, giving us time to 3) look closely at the surgical option, and do the VATS immediately if it is doable. Enjoy NED status and look at advajent therapies 4) If surgery isn't an option, try IL-2 or move to Darafenib / Mek combo unless there is a PD-1 trial. This strategy takes the time pressure off of us and allows us, since both drugs are approved, to follow the same basic protocal out of the clinical trial setting.
Does this sound like a logical approach? whatever we do, we have to make a decision today as she is scheduled for all day stress tests on Monday.
By the way, not sure how to make my email visible. My phone number appears to be now and I'd be happy to receive a call from you if you will need to speak with me.
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- December 6, 2013 at 12:37 pm
You make many really great points here. We are now realizing that surgery wasn't given a fair hearing before being guided into this trial and feel trapped by the timelines of its protocol that is forcing us into the hospital at Christmas. We are concerned that the IL2 side effects may be worse when combined with Zelboraf and the idea of being in a teaching hospital during Christmas and New Years holidays has us very worried. After all of this excellent feedback, what would seem like a logical solution would be this– 1) leave the trial immediately.2) stay on Zelboraf since it it working, giving us time to 3) look closely at the surgical option, and do the VATS immediately if it is doable. Enjoy NED status and look at advajent therapies 4) If surgery isn't an option, try IL-2 or move to Darafenib / Mek combo unless there is a PD-1 trial. This strategy takes the time pressure off of us and allows us, since both drugs are approved, to follow the same basic protocal out of the clinical trial setting.
Does this sound like a logical approach? whatever we do, we have to make a decision today as she is scheduled for all day stress tests on Monday.
By the way, not sure how to make my email visible. My phone number appears to be now and I'd be happy to receive a call from you if you will need to speak with me.
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- December 6, 2013 at 12:37 pm
You make many really great points here. We are now realizing that surgery wasn't given a fair hearing before being guided into this trial and feel trapped by the timelines of its protocol that is forcing us into the hospital at Christmas. We are concerned that the IL2 side effects may be worse when combined with Zelboraf and the idea of being in a teaching hospital during Christmas and New Years holidays has us very worried. After all of this excellent feedback, what would seem like a logical solution would be this– 1) leave the trial immediately.2) stay on Zelboraf since it it working, giving us time to 3) look closely at the surgical option, and do the VATS immediately if it is doable. Enjoy NED status and look at advajent therapies 4) If surgery isn't an option, try IL-2 or move to Darafenib / Mek combo unless there is a PD-1 trial. This strategy takes the time pressure off of us and allows us, since both drugs are approved, to follow the same basic protocal out of the clinical trial setting.
Does this sound like a logical approach? whatever we do, we have to make a decision today as she is scheduled for all day stress tests on Monday.
By the way, not sure how to make my email visible. My phone number appears to be now and I'd be happy to receive a call from you if you will need to speak with me.
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- December 6, 2013 at 2:45 pm
Hi Brad-
You have completed enough of your profile that we can now send you private messages. I just did that. If you do not receive it in your email inbox soon, be sure to check your "Spam" folder; sometimes they get dumped there. Telephone numbers are never visible to anyone on MPIP; you have to send those out individually via private messages.
It sounds from your post above that you and your daughter have done a great job of educating yourselves about all the various treatment options and have been able to formulate some very intelligent questions about how they could apply to your daughter's case. Good job!
You said in a prior post that when you were first confronted with melanoma you were overwhelmed with all this new jargon and different treatment options and conflicting opinions. Meanwhile, your daughter and the rest of the family probably felt tremendous anxiety and urgency to get SOME treatment started ASAP. What you have been feeling and experiencing is absolutely typical and practically unavoidable for newly-diagnosed people– especially those diagnosed with Stage IV.
I want you to know that I think that you have been doing exactly the right things all along. You got your daughter to a melanoma Center of Excellence, got her started on a valid and promising treatment plan which, thank Heavens, worked. And once you had a chance to catch your breath you started to put some real time and effort into researching and understanding all this melanoma stuff. You have been a tremendous advocate for your daughter– we should all be as lucky to have a father like you.
I won't comment directly on your proposed plan of action. It is not my place to give you actual medical advice or to comment on whether or not your daughter should leave the clinical trial. What I wanted was for you and her to understand the various treatment options available to her and to indicate some circumstances in which they might be appropriate for her. I wanted to arm you with the information you need to discuss these issues intelligently with her doctor and for you and she both to be comfortable with whatever decision you make. I think you are at that point now.
Your main difficulty right now seems to be the clinical trial timeline. I still think it would be best if your daughter could consult with one other melanoma specialist before making a decision about the clinical trial. Would it be possible for her to delay the stress tests for a week or so? Could you call the clinical trial coordinator and reschedule the tests? Or could your daughter go ahead and get the stress tests out of the way? They won't do her any harm, will they? As long as she doesn't actually get the IL-2 unless and until she chooses to, everything else is just prelude.
I'm sure that whatever you and your daughter decide to do will be the right decision for you. Melanoma is an unusually tricky and complex disease. Every patient seems to respond differently to every treatment and there are no guarantees. It is absolutely crucial that you and your daughter embrace the philosophy that all you can do is to make the best decision you can with the information you have at the time and then never look back– never second guess yourself. So far, you have both been doing exactly the right things. Keep up the good work!
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- December 6, 2013 at 2:45 pm
Hi Brad-
You have completed enough of your profile that we can now send you private messages. I just did that. If you do not receive it in your email inbox soon, be sure to check your "Spam" folder; sometimes they get dumped there. Telephone numbers are never visible to anyone on MPIP; you have to send those out individually via private messages.
It sounds from your post above that you and your daughter have done a great job of educating yourselves about all the various treatment options and have been able to formulate some very intelligent questions about how they could apply to your daughter's case. Good job!
You said in a prior post that when you were first confronted with melanoma you were overwhelmed with all this new jargon and different treatment options and conflicting opinions. Meanwhile, your daughter and the rest of the family probably felt tremendous anxiety and urgency to get SOME treatment started ASAP. What you have been feeling and experiencing is absolutely typical and practically unavoidable for newly-diagnosed people– especially those diagnosed with Stage IV.
I want you to know that I think that you have been doing exactly the right things all along. You got your daughter to a melanoma Center of Excellence, got her started on a valid and promising treatment plan which, thank Heavens, worked. And once you had a chance to catch your breath you started to put some real time and effort into researching and understanding all this melanoma stuff. You have been a tremendous advocate for your daughter– we should all be as lucky to have a father like you.
I won't comment directly on your proposed plan of action. It is not my place to give you actual medical advice or to comment on whether or not your daughter should leave the clinical trial. What I wanted was for you and her to understand the various treatment options available to her and to indicate some circumstances in which they might be appropriate for her. I wanted to arm you with the information you need to discuss these issues intelligently with her doctor and for you and she both to be comfortable with whatever decision you make. I think you are at that point now.
Your main difficulty right now seems to be the clinical trial timeline. I still think it would be best if your daughter could consult with one other melanoma specialist before making a decision about the clinical trial. Would it be possible for her to delay the stress tests for a week or so? Could you call the clinical trial coordinator and reschedule the tests? Or could your daughter go ahead and get the stress tests out of the way? They won't do her any harm, will they? As long as she doesn't actually get the IL-2 unless and until she chooses to, everything else is just prelude.
I'm sure that whatever you and your daughter decide to do will be the right decision for you. Melanoma is an unusually tricky and complex disease. Every patient seems to respond differently to every treatment and there are no guarantees. It is absolutely crucial that you and your daughter embrace the philosophy that all you can do is to make the best decision you can with the information you have at the time and then never look back– never second guess yourself. So far, you have both been doing exactly the right things. Keep up the good work!
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- December 6, 2013 at 2:45 pm
Hi Brad-
You have completed enough of your profile that we can now send you private messages. I just did that. If you do not receive it in your email inbox soon, be sure to check your "Spam" folder; sometimes they get dumped there. Telephone numbers are never visible to anyone on MPIP; you have to send those out individually via private messages.
It sounds from your post above that you and your daughter have done a great job of educating yourselves about all the various treatment options and have been able to formulate some very intelligent questions about how they could apply to your daughter's case. Good job!
You said in a prior post that when you were first confronted with melanoma you were overwhelmed with all this new jargon and different treatment options and conflicting opinions. Meanwhile, your daughter and the rest of the family probably felt tremendous anxiety and urgency to get SOME treatment started ASAP. What you have been feeling and experiencing is absolutely typical and practically unavoidable for newly-diagnosed people– especially those diagnosed with Stage IV.
I want you to know that I think that you have been doing exactly the right things all along. You got your daughter to a melanoma Center of Excellence, got her started on a valid and promising treatment plan which, thank Heavens, worked. And once you had a chance to catch your breath you started to put some real time and effort into researching and understanding all this melanoma stuff. You have been a tremendous advocate for your daughter– we should all be as lucky to have a father like you.
I won't comment directly on your proposed plan of action. It is not my place to give you actual medical advice or to comment on whether or not your daughter should leave the clinical trial. What I wanted was for you and her to understand the various treatment options available to her and to indicate some circumstances in which they might be appropriate for her. I wanted to arm you with the information you need to discuss these issues intelligently with her doctor and for you and she both to be comfortable with whatever decision you make. I think you are at that point now.
Your main difficulty right now seems to be the clinical trial timeline. I still think it would be best if your daughter could consult with one other melanoma specialist before making a decision about the clinical trial. Would it be possible for her to delay the stress tests for a week or so? Could you call the clinical trial coordinator and reschedule the tests? Or could your daughter go ahead and get the stress tests out of the way? They won't do her any harm, will they? As long as she doesn't actually get the IL-2 unless and until she chooses to, everything else is just prelude.
I'm sure that whatever you and your daughter decide to do will be the right decision for you. Melanoma is an unusually tricky and complex disease. Every patient seems to respond differently to every treatment and there are no guarantees. It is absolutely crucial that you and your daughter embrace the philosophy that all you can do is to make the best decision you can with the information you have at the time and then never look back– never second guess yourself. So far, you have both been doing exactly the right things. Keep up the good work!
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- December 5, 2013 at 4:13 am
Brad, I strongly suggest that you read this recent article about the recommended sequence of treatmetns for melanoma. http://www.nature.com/nrclinonc/journal/v10/n10/full/nrclinonc.2013.153.html
Note that the article only refers to current FDA approved treatments, not anything still in clinical trials like anti-PD1.
You will see that for Stage IV melanoma, if all of the tumors can be surgically removed the panel recommends surgery as the first treatment. If they can't be surgically removed, they recommend immune-based therapies first and if the BRAF mutation is present, BRAF inhibitors last. For the immune-based therapies, they recommend IL-2 first. If that doesn't work, try ipi. The reason the panel recommended IL-2 first is that IL-2 is a rough treatment to go through so it's better to do it first while the patient is still relatively strong and healthy. Furthermore, they had no idea what the interaction would be between IL-2 and ipi– if they give ipi first it might (might) worsen the side effects of IL-2. So they recommended IL-2 first.
I suspect that the clilnical trial your daughter is on is following these guidelines.
What confuses me is that Zelboraf is a chemcial that binds to a protein inside the melanoma cells. IL-2 is essentially a hormone that stimulates the immune system. I don't see any way that IL-2 could make the Zelboraf work better or visa versa. IL-2 + ipi or IL-2 + anti-PD1 might be good because they are all immune-realted. But IL-2 + Zelboraf? Confusing.
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- December 5, 2013 at 3:22 am
6% is the cure rate…not response rate. My oncologist think it's skewed as well…il-2 has it's place and combo therapy may be a good route. Not sure if Jimmy B is on here but he has done extensive research on il2 and if I'm not mistaken doing yervoy followed by il2 should have been looked at long ago….guessing same for zel.
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- December 5, 2013 at 12:50 pm
Oddly enough I read the article that POW sent. My oncologist is one of them and said he wasn't sure if ipi or il-2 should be first…I get very confused by all if this
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- December 5, 2013 at 1:07 pm
Yes, everybody is confused by all this.
The immune system is very complex and reserachers are constantly finding hew wrinkles as to what makes it work or what makes it fail in different patients. Many of these drugs are new and more time is needed to find out how they work in the general patient population–sometimes what happens in the general population is not quite what was observed during clinical trials. And finally, when two drugs are manufactured by different companies, it is very difficult to get them to cooperate in sponsoring joint clinical trials to either compare them head-to-head or to see if using them both together improves effectiveness. This lack of cooperation slows down progress.
Of course we would all love to have solid answers to our questions and we don't. But the good news is that we don't have the answers because we are working with brand new melanoma treatments– the first new treatments in 20 years. That's a good thing!
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- December 5, 2013 at 1:07 pm
Yes, everybody is confused by all this.
The immune system is very complex and reserachers are constantly finding hew wrinkles as to what makes it work or what makes it fail in different patients. Many of these drugs are new and more time is needed to find out how they work in the general patient population–sometimes what happens in the general population is not quite what was observed during clinical trials. And finally, when two drugs are manufactured by different companies, it is very difficult to get them to cooperate in sponsoring joint clinical trials to either compare them head-to-head or to see if using them both together improves effectiveness. This lack of cooperation slows down progress.
Of course we would all love to have solid answers to our questions and we don't. But the good news is that we don't have the answers because we are working with brand new melanoma treatments– the first new treatments in 20 years. That's a good thing!
-
- December 5, 2013 at 1:07 pm
Yes, everybody is confused by all this.
The immune system is very complex and reserachers are constantly finding hew wrinkles as to what makes it work or what makes it fail in different patients. Many of these drugs are new and more time is needed to find out how they work in the general patient population–sometimes what happens in the general population is not quite what was observed during clinical trials. And finally, when two drugs are manufactured by different companies, it is very difficult to get them to cooperate in sponsoring joint clinical trials to either compare them head-to-head or to see if using them both together improves effectiveness. This lack of cooperation slows down progress.
Of course we would all love to have solid answers to our questions and we don't. But the good news is that we don't have the answers because we are working with brand new melanoma treatments– the first new treatments in 20 years. That's a good thing!
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- December 5, 2013 at 11:20 pm
Hi Brad,
I don't post as often but read weekly. I understand the dilema. Read my profile, it may help.
It is a personal decision. I did 23 bags of IL-2 after diagnosed stage IV, 7 years after being 2A. A lung met and single very small mass showed up in my pectoral muscle. VATS removed the lung tumor and I underwent IL-2 in 2010 for the remaining very small tumor.
There is a great study on long turm survival = cure for those who respond 100%. Low tumor burdens and mets to the skin ex. sub-q's had a very very high response rate followed by 1-2 lung mets.
It is very tough but doable. You find out quickly if it worked. It may enhance the other immune drugs / Braf inhibitors, and drugs like Yervoy to work more effectively. If it fails, she will qualify for more trials. To date, nothing new has a prolonged survival like IL-2. For most, the other drugs / pathway blockers etc. only hold things at bay until mel comes back with a vengance and kills you quickly.
Remember that oncs may shy away from it because it is tough, very involved while undergoing treatment, and is old ex.not as exciting as these newer wonderful drugs.
I did IL-2 because I was an ideal patient, it would be over soon, it may enahnce other therapy even if it by itself doesn't work, and may open other trials that required a failed systemic treatment. I also don't have to stay on $$$ meds for the rest of my life. My last treatment WAS the IL-2.
My onc said, although you may only have 2 tumors now, obviously it has circulated throughout your body. Systemic therapy can affect all the tumors that aren't currently showing up.
You can read my comments. NYKaren underwent IL-2 as well as others.
BTW – I have been NED for over 3 years now. Both onc's have allowed the idea that I will probably NEVER hear from mel again, but do so in a hushed tone and with fingers crossed. I still get a scan of some sort twice a year. I was 90% back to normal within 2 weeks. My skin was baby bottom smooth afterwards as well!
IMHO – research the latest info on IL-2 and long time survival. Your daughter seems like a good candidate. Even if I didn't respond, it would have been worth it.
Feel free to contact me if you want more info on what it was like to endure it.
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- December 5, 2013 at 11:20 pm
Hi Brad,
I don't post as often but read weekly. I understand the dilema. Read my profile, it may help.
It is a personal decision. I did 23 bags of IL-2 after diagnosed stage IV, 7 years after being 2A. A lung met and single very small mass showed up in my pectoral muscle. VATS removed the lung tumor and I underwent IL-2 in 2010 for the remaining very small tumor.
There is a great study on long turm survival = cure for those who respond 100%. Low tumor burdens and mets to the skin ex. sub-q's had a very very high response rate followed by 1-2 lung mets.
It is very tough but doable. You find out quickly if it worked. It may enhance the other immune drugs / Braf inhibitors, and drugs like Yervoy to work more effectively. If it fails, she will qualify for more trials. To date, nothing new has a prolonged survival like IL-2. For most, the other drugs / pathway blockers etc. only hold things at bay until mel comes back with a vengance and kills you quickly.
Remember that oncs may shy away from it because it is tough, very involved while undergoing treatment, and is old ex.not as exciting as these newer wonderful drugs.
I did IL-2 because I was an ideal patient, it would be over soon, it may enahnce other therapy even if it by itself doesn't work, and may open other trials that required a failed systemic treatment. I also don't have to stay on $$$ meds for the rest of my life. My last treatment WAS the IL-2.
My onc said, although you may only have 2 tumors now, obviously it has circulated throughout your body. Systemic therapy can affect all the tumors that aren't currently showing up.
You can read my comments. NYKaren underwent IL-2 as well as others.
BTW – I have been NED for over 3 years now. Both onc's have allowed the idea that I will probably NEVER hear from mel again, but do so in a hushed tone and with fingers crossed. I still get a scan of some sort twice a year. I was 90% back to normal within 2 weeks. My skin was baby bottom smooth afterwards as well!
IMHO – research the latest info on IL-2 and long time survival. Your daughter seems like a good candidate. Even if I didn't respond, it would have been worth it.
Feel free to contact me if you want more info on what it was like to endure it.
-
- December 5, 2013 at 11:20 pm
Hi Brad,
I don't post as often but read weekly. I understand the dilema. Read my profile, it may help.
It is a personal decision. I did 23 bags of IL-2 after diagnosed stage IV, 7 years after being 2A. A lung met and single very small mass showed up in my pectoral muscle. VATS removed the lung tumor and I underwent IL-2 in 2010 for the remaining very small tumor.
There is a great study on long turm survival = cure for those who respond 100%. Low tumor burdens and mets to the skin ex. sub-q's had a very very high response rate followed by 1-2 lung mets.
It is very tough but doable. You find out quickly if it worked. It may enhance the other immune drugs / Braf inhibitors, and drugs like Yervoy to work more effectively. If it fails, she will qualify for more trials. To date, nothing new has a prolonged survival like IL-2. For most, the other drugs / pathway blockers etc. only hold things at bay until mel comes back with a vengance and kills you quickly.
Remember that oncs may shy away from it because it is tough, very involved while undergoing treatment, and is old ex.not as exciting as these newer wonderful drugs.
I did IL-2 because I was an ideal patient, it would be over soon, it may enahnce other therapy even if it by itself doesn't work, and may open other trials that required a failed systemic treatment. I also don't have to stay on $$$ meds for the rest of my life. My last treatment WAS the IL-2.
My onc said, although you may only have 2 tumors now, obviously it has circulated throughout your body. Systemic therapy can affect all the tumors that aren't currently showing up.
You can read my comments. NYKaren underwent IL-2 as well as others.
BTW – I have been NED for over 3 years now. Both onc's have allowed the idea that I will probably NEVER hear from mel again, but do so in a hushed tone and with fingers crossed. I still get a scan of some sort twice a year. I was 90% back to normal within 2 weeks. My skin was baby bottom smooth afterwards as well!
IMHO – research the latest info on IL-2 and long time survival. Your daughter seems like a good candidate. Even if I didn't respond, it would have been worth it.
Feel free to contact me if you want more info on what it was like to endure it.
-
- December 6, 2013 at 4:58 am
Brad-
I'm currently enrolled in the trial. I was randomized to ipi first then IL-2(obviously I was BRAF neg). My oncologist was straightforward and said they aren't sure which first would be a better "primer". My oncologist is one of the melanoma specialists who participated in the study/article that POW sent out. Also, Jerry from Fauq turned me on to Jimmy B's blog…believe he was mentioned earlier in this thread….Melanoma Missionary….very busy blog but LOT of good info….don't hold me to this but his research has said any of these drugs in combo could lead to better responses. After you read some of his blog you'll see he is clearly a supporter of IL-2. Something worth checking out….
I know it won't be easy but I look forward to IL-2….I have small tumor burden…2 in right lung (1cs & 5mm) &1 in lower left lobe that is 4mm. This is after a scan that was 6 months ago and my onc felt I was nearly out of woods….no telling with melanoma which is why I want to give myself and body every chance to destroy this beast once and for all. I don't know much but I hear a lot about combo theraphy…I agreed immediately to take part in this trial…..I also had a friend who was stage 4 in 1999 and though it was tough and he didn;t paint a pretty picture….he's still here and would do it all over again. I'm checking in Jan 6th….
I know it's a difficult situation….my father comes to my appts and constantly asks my onc if the ipi is working and there is no disease on my Dec 20th scans….will I have to do IL-2. Drives me crazy but as a father myself….I understand his emotions… I wish clarity and peace in whatever decision you and your family make.
Josh
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- December 6, 2013 at 4:58 am
Brad-
I'm currently enrolled in the trial. I was randomized to ipi first then IL-2(obviously I was BRAF neg). My oncologist was straightforward and said they aren't sure which first would be a better "primer". My oncologist is one of the melanoma specialists who participated in the study/article that POW sent out. Also, Jerry from Fauq turned me on to Jimmy B's blog…believe he was mentioned earlier in this thread….Melanoma Missionary….very busy blog but LOT of good info….don't hold me to this but his research has said any of these drugs in combo could lead to better responses. After you read some of his blog you'll see he is clearly a supporter of IL-2. Something worth checking out….
I know it won't be easy but I look forward to IL-2….I have small tumor burden…2 in right lung (1cs & 5mm) &1 in lower left lobe that is 4mm. This is after a scan that was 6 months ago and my onc felt I was nearly out of woods….no telling with melanoma which is why I want to give myself and body every chance to destroy this beast once and for all. I don't know much but I hear a lot about combo theraphy…I agreed immediately to take part in this trial…..I also had a friend who was stage 4 in 1999 and though it was tough and he didn;t paint a pretty picture….he's still here and would do it all over again. I'm checking in Jan 6th….
I know it's a difficult situation….my father comes to my appts and constantly asks my onc if the ipi is working and there is no disease on my Dec 20th scans….will I have to do IL-2. Drives me crazy but as a father myself….I understand his emotions… I wish clarity and peace in whatever decision you and your family make.
Josh
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- December 6, 2013 at 4:58 am
Brad-
I'm currently enrolled in the trial. I was randomized to ipi first then IL-2(obviously I was BRAF neg). My oncologist was straightforward and said they aren't sure which first would be a better "primer". My oncologist is one of the melanoma specialists who participated in the study/article that POW sent out. Also, Jerry from Fauq turned me on to Jimmy B's blog…believe he was mentioned earlier in this thread….Melanoma Missionary….very busy blog but LOT of good info….don't hold me to this but his research has said any of these drugs in combo could lead to better responses. After you read some of his blog you'll see he is clearly a supporter of IL-2. Something worth checking out….
I know it won't be easy but I look forward to IL-2….I have small tumor burden…2 in right lung (1cs & 5mm) &1 in lower left lobe that is 4mm. This is after a scan that was 6 months ago and my onc felt I was nearly out of woods….no telling with melanoma which is why I want to give myself and body every chance to destroy this beast once and for all. I don't know much but I hear a lot about combo theraphy…I agreed immediately to take part in this trial…..I also had a friend who was stage 4 in 1999 and though it was tough and he didn;t paint a pretty picture….he's still here and would do it all over again. I'm checking in Jan 6th….
I know it's a difficult situation….my father comes to my appts and constantly asks my onc if the ipi is working and there is no disease on my Dec 20th scans….will I have to do IL-2. Drives me crazy but as a father myself….I understand his emotions… I wish clarity and peace in whatever decision you and your family make.
Josh
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- December 6, 2013 at 3:29 pm
I agree with the IL2 approach. I completed 54 bags of the stuff and this coming February 5th will celebrate 5 years NED. I was Stage 4, 39, healthy, only 2 intestinal METS. It was a very tough treatment. Without my family being there with me everyday, I would not have done so many.
I knew the odds were low for success when I decided on the treatment option, but I wanted that homerun and it looks like I got it. The odds with melanoma are improving, but in the end don't we all want to hit that homerun and win the game. Beat Melanoma and live happily ever after! Until they develop a true cure for melanoma, patients have to keep choosing the between treatments. IL2 is the only one that can prove long term NED.
I think if you are young, healthy, you need to do the IL2 and swing for the fences.
I am glad I made that choice.
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- December 6, 2013 at 3:29 pm
I agree with the IL2 approach. I completed 54 bags of the stuff and this coming February 5th will celebrate 5 years NED. I was Stage 4, 39, healthy, only 2 intestinal METS. It was a very tough treatment. Without my family being there with me everyday, I would not have done so many.
I knew the odds were low for success when I decided on the treatment option, but I wanted that homerun and it looks like I got it. The odds with melanoma are improving, but in the end don't we all want to hit that homerun and win the game. Beat Melanoma and live happily ever after! Until they develop a true cure for melanoma, patients have to keep choosing the between treatments. IL2 is the only one that can prove long term NED.
I think if you are young, healthy, you need to do the IL2 and swing for the fences.
I am glad I made that choice.
-
- December 6, 2013 at 3:29 pm
I agree with the IL2 approach. I completed 54 bags of the stuff and this coming February 5th will celebrate 5 years NED. I was Stage 4, 39, healthy, only 2 intestinal METS. It was a very tough treatment. Without my family being there with me everyday, I would not have done so many.
I knew the odds were low for success when I decided on the treatment option, but I wanted that homerun and it looks like I got it. The odds with melanoma are improving, but in the end don't we all want to hit that homerun and win the game. Beat Melanoma and live happily ever after! Until they develop a true cure for melanoma, patients have to keep choosing the between treatments. IL2 is the only one that can prove long term NED.
I think if you are young, healthy, you need to do the IL2 and swing for the fences.
I am glad I made that choice.
-
- December 8, 2013 at 3:31 am
Thanks a lot for your feedback. Its bigger than hitting a home run, its like winning the lottery. My guess is that in the end, she will probably follow the same path. We can only hope to have such excellent results. I have a question though, and it may be unfair to ask it.If you had to make this decision today, with much less toxic and more durable choices like Ipi (20%) and PD-1 (41%) would you still make that choice. We could have entered a PD-1 trial available at the same time, but instead were directed to this one.That is what is causing our confusion and concern. With surgery as one option, and the modern suite of less toxic systemic options, it makes it hard to pull the trigger on IL2.
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- December 8, 2013 at 3:31 am
Thanks a lot for your feedback. Its bigger than hitting a home run, its like winning the lottery. My guess is that in the end, she will probably follow the same path. We can only hope to have such excellent results. I have a question though, and it may be unfair to ask it.If you had to make this decision today, with much less toxic and more durable choices like Ipi (20%) and PD-1 (41%) would you still make that choice. We could have entered a PD-1 trial available at the same time, but instead were directed to this one.That is what is causing our confusion and concern. With surgery as one option, and the modern suite of less toxic systemic options, it makes it hard to pull the trigger on IL2.
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- December 8, 2013 at 3:31 am
Thanks a lot for your feedback. Its bigger than hitting a home run, its like winning the lottery. My guess is that in the end, she will probably follow the same path. We can only hope to have such excellent results. I have a question though, and it may be unfair to ask it.If you had to make this decision today, with much less toxic and more durable choices like Ipi (20%) and PD-1 (41%) would you still make that choice. We could have entered a PD-1 trial available at the same time, but instead were directed to this one.That is what is causing our confusion and concern. With surgery as one option, and the modern suite of less toxic systemic options, it makes it hard to pull the trigger on IL2.
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- December 9, 2013 at 4:17 pm
I agree with Kim, I know I would do it again. Yes there are many more options today, and they are easier to handle and tolerate. But this is Melanoma and it's aggressive. I consider myself lucky that I only had 2 intestinal METS. It made the decision easier. We waited to surgically remove them until after the IL2 treatments. leaving them in gave us something to measure. I could tell after the first two weeks that the IL2 was working and chose to continue.
It was scary to leave them in there, knowing how Melanoma travels Thru the body. I wanted to know that it was dying and when they removed them, that they were the last of the cancer in my body.
the fact that I could visually see the METS shrink on the screen was an unbelievable mental lift.
Kim K description of her experience is a scary read, but accurate. we could paint the same picture. My strength came from my wife who was pregnant at the time of my treatments. Having that goal to be there for my son was what made the pain and itching worth it.
In my rambling way, I agree that I would do it again. IL2 has the ability to make you NED for a very long time. If you are healthy and can tolerate the treatment do it while you can. What happens if you don't respond to IPI or PD-1, by that time your tumor burden could make it difficult to receive IL2. With no clear treatment path, only options, it is difficult.
I hope you make your decision and commit to the treatment path, no second guesses. If I can be of any help, please let me know if you want a phone conversation. I am in Illinois and willing to answer any questions I can.
-
- December 9, 2013 at 4:17 pm
I agree with Kim, I know I would do it again. Yes there are many more options today, and they are easier to handle and tolerate. But this is Melanoma and it's aggressive. I consider myself lucky that I only had 2 intestinal METS. It made the decision easier. We waited to surgically remove them until after the IL2 treatments. leaving them in gave us something to measure. I could tell after the first two weeks that the IL2 was working and chose to continue.
It was scary to leave them in there, knowing how Melanoma travels Thru the body. I wanted to know that it was dying and when they removed them, that they were the last of the cancer in my body.
the fact that I could visually see the METS shrink on the screen was an unbelievable mental lift.
Kim K description of her experience is a scary read, but accurate. we could paint the same picture. My strength came from my wife who was pregnant at the time of my treatments. Having that goal to be there for my son was what made the pain and itching worth it.
In my rambling way, I agree that I would do it again. IL2 has the ability to make you NED for a very long time. If you are healthy and can tolerate the treatment do it while you can. What happens if you don't respond to IPI or PD-1, by that time your tumor burden could make it difficult to receive IL2. With no clear treatment path, only options, it is difficult.
I hope you make your decision and commit to the treatment path, no second guesses. If I can be of any help, please let me know if you want a phone conversation. I am in Illinois and willing to answer any questions I can.
-
- December 9, 2013 at 4:17 pm
I agree with Kim, I know I would do it again. Yes there are many more options today, and they are easier to handle and tolerate. But this is Melanoma and it's aggressive. I consider myself lucky that I only had 2 intestinal METS. It made the decision easier. We waited to surgically remove them until after the IL2 treatments. leaving them in gave us something to measure. I could tell after the first two weeks that the IL2 was working and chose to continue.
It was scary to leave them in there, knowing how Melanoma travels Thru the body. I wanted to know that it was dying and when they removed them, that they were the last of the cancer in my body.
the fact that I could visually see the METS shrink on the screen was an unbelievable mental lift.
Kim K description of her experience is a scary read, but accurate. we could paint the same picture. My strength came from my wife who was pregnant at the time of my treatments. Having that goal to be there for my son was what made the pain and itching worth it.
In my rambling way, I agree that I would do it again. IL2 has the ability to make you NED for a very long time. If you are healthy and can tolerate the treatment do it while you can. What happens if you don't respond to IPI or PD-1, by that time your tumor burden could make it difficult to receive IL2. With no clear treatment path, only options, it is difficult.
I hope you make your decision and commit to the treatment path, no second guesses. If I can be of any help, please let me know if you want a phone conversation. I am in Illinois and willing to answer any questions I can.
-
- December 9, 2013 at 10:03 am
Hi Brad,
Yes, I would do IL-2 again in spite of the toxicity. Yes you do get very sick, but you are in the ICU being closely monitored. I had an excellent team of doctors there to keep me alive. They were there before each and every dose, or at least called before a group decision was made to give me another bag. You have to have trust. Period.
Many oncs will scare the Sh#@!*! out of you and may even shy away from the treatment. I was scared and am in the medical profession. I went with the numbers. Again, to date, NOTHING so far has a co-hort of proven NED survivors of over 20+ years. Granted it is a small number, but it exists. Nothing else to date can touch that.
It is tough but doable and there are many here that will help prepare your family for the side effects should your daughter decide to go that route. As a patient, I was premeded and on at least 7 other meds to counteract the side effects. Yes, I had them all. Most of which were controlled with meds. I kept my eye on the prize, my 2 young girls at the time, 2 & 4 years old. I am a single parent.
I was destined to die, therefore if I came close to death during treatment, and yet inspite of IL-2 went the way of the 94-97% of mel patients, at least I can say I did my best. I had a pulmonary embolus the night after my lung surgery. While gasping for air and unable to breath while in the CT tube, I became angry because I never had the chance to fight my mel. IL-2 gave me that chance. It was worth it. If I failed at least I still had the newer drugs as my ace in the hole. The B-raf inhibitors had just started phase III trials and I was B-raf pos.
I debated surgery to become NED, but would always have the worry that it would come back because I didn't do anything systemic. You can do surgery later to remove any stubborn mets if otherwise stable, as well as save the newer drugs and trials as her ace in the hole.
It either works or it doesn't. You find out quickly. You can always enter another trial if it fails. If you wait too long and develop a high tumor burden, it is very very rare that IL-2 will give you a complete response, and you will probably be too sick to undergo treatment. My oncs knew of these great drugs that were in trials, yet they said the first course they would do if it was them, was IL-2. IL-2 is an upfront treatment for strong, healthy, low tumor burden patients without brain mets, pretty much ONLY.
I even flew to UCLA for a second opinion with Dr. Ribas' group.
For me it was harder on my mom to watch me be so sick. Basically I just slept, had the runs real bad and throat / mouth ulcers that bothered me. My heart arrythmias were annoying as well (only at the end of my last cycle), and a little spooky since I knew how to read an ECG. Not a heart rythm I would be happy to see in one of my veterinary patients. I also felt my heart flip-flopping while slamming agianst my chest wall which made it impossible to sleep. I guess that is why I had my day dream. Yes I had many more side effects, but my treatment was stopped as a result and issues quickly resolved, and I wasn't in any pain (except sore throat and bum). After the 3rd day I just slept and used the bathroom……
The so-called single hallucination I had was like having a dream but woke up mid dream. I was talking to my 2 dogs asking them if they wanted to go to the lake to swim and play. Mom interrupted me and asked if I knew where I was. Oh, damn why did she have to wake me up, it was a really good dream! I guess her feelings were hurt because I was dreaming about my dogs – LOL.
The other side effects I didn't notice eventhough I knew how close to the edge of life I was walking on. The IL-2 pushed me into the chasm of the afterworld, but the bungee cord my doctors attached to me securely always snatched me back.
I admit, if I was a partial responder, it would have taken all of the few months between cycles to push myself to go back for another round. I am glad I didn't have to go there. My 2 girls and MPIP really did give me the strength to perservere. I thought of my other friends and warriors who lead the gallant fight before me, and I drew from their courage. Cindy Trauble, Glenda, Lori P, Diane from Spokane, Carole Kelley, the entire Asheville gange, Allen Carr, Stan N, AK mom, Debbie R, Janner, Charlie S, Marie M, Barbie Girl and on and on, I can't even begin to name them all. It was as if they were there carrying me onwards when I couldn't do it myself. We spent hours in chat, something that unfortunately isn't as acitve anymore. Hopefully that will change with each update to this site.
This place gave me the courage. I never thought I would be an "old timer", but after 12 years from my initial diagnosis, I guess I am…..
Regardless, whatever her decision, never ever look back and play the shouida coulda game, it serves no purpose. She needs to buy into her treatment 100% whatever it is. You will get support no matter which way her path takes her. I look at the numbers. I just hate it when an otherwise ideal patient turns IL-2 down because of fear alone. Make a concious decision not to do it for valid reasons, just as you decide what treatment to ultimately pursue.
Sorry, but over the past couple of years I have seen a vailid option being marginalized with all these great drugs. Unfortunately, just like IL-2, there are very few long-term survivors and there hasn't been enough time to see just how durable those long term remissions are. I truely hope they are though…..
Lastly, a few months ago I think POW posted the latest ASCO proceedings and one of the topics was a flowchart of treatment for stage III, IV patients based on what is known about all the drug classes. It may help with her decision.
Hugs from Hawaii,
Kim K
-
- December 9, 2013 at 5:21 pm
Kim, What a remarkable story and thanks so much for sharing it with me.
What is exciting is that this trial combines both Z and IL2, with the hope of course that it turns the 5% into 50%. Wouldn't that be amazing for all of us? In my daughters case may never really know if it is the Z or the IL2 or both that made the tumor go away. I guess thats a great problem to have. We are fortunate to know in advance that the Z is working, as she has stopped coughing and had a scan to back it up.
The trial format has backed us up against the holidays, giving us little time get another opinion. I hate the idea of being in intensive care when the hospital may not have the A team on duty. Also, unfortunately, we don't have a what I would call a great relationship with our oncologist (who credentials are impecable) but who is a poor communicator and typically leaves her checkups to his PA. Inexcusable I think and something we must deal with soon. Its a marriage of convenience to be honest. Anyway, it makes me wonder if he'll really be there everyday as we have been promised, including New Years Day. I guess this is where the trust needs to come in. I've challenged the start dates until I'm blue in the face. Just the luck of the draw I guess
On a happy note, my daughter got engaged yesterday. She has much to fight for.
Thanks again for your great advice. Brad
-
- December 9, 2013 at 5:21 pm
Kim, What a remarkable story and thanks so much for sharing it with me.
What is exciting is that this trial combines both Z and IL2, with the hope of course that it turns the 5% into 50%. Wouldn't that be amazing for all of us? In my daughters case may never really know if it is the Z or the IL2 or both that made the tumor go away. I guess thats a great problem to have. We are fortunate to know in advance that the Z is working, as she has stopped coughing and had a scan to back it up.
The trial format has backed us up against the holidays, giving us little time get another opinion. I hate the idea of being in intensive care when the hospital may not have the A team on duty. Also, unfortunately, we don't have a what I would call a great relationship with our oncologist (who credentials are impecable) but who is a poor communicator and typically leaves her checkups to his PA. Inexcusable I think and something we must deal with soon. Its a marriage of convenience to be honest. Anyway, it makes me wonder if he'll really be there everyday as we have been promised, including New Years Day. I guess this is where the trust needs to come in. I've challenged the start dates until I'm blue in the face. Just the luck of the draw I guess
On a happy note, my daughter got engaged yesterday. She has much to fight for.
Thanks again for your great advice. Brad
-
- December 9, 2013 at 9:27 pm
Brad,
So happy for your daughter and her engagement as well as the joy you will have walking her down the aisle. My experience with the holidays was good. I saw two consecititive New Years from a hospital bed. One at Northwestern in Chicago for IL2 and I got the A team, didn't feel a difference in care level.
let us know how we can help.
Matt
-
- December 9, 2013 at 9:27 pm
Brad,
So happy for your daughter and her engagement as well as the joy you will have walking her down the aisle. My experience with the holidays was good. I saw two consecititive New Years from a hospital bed. One at Northwestern in Chicago for IL2 and I got the A team, didn't feel a difference in care level.
let us know how we can help.
Matt
-
- December 9, 2013 at 9:27 pm
Brad,
So happy for your daughter and her engagement as well as the joy you will have walking her down the aisle. My experience with the holidays was good. I saw two consecititive New Years from a hospital bed. One at Northwestern in Chicago for IL2 and I got the A team, didn't feel a difference in care level.
let us know how we can help.
Matt
-
- December 11, 2013 at 8:31 am
Congratulations for your family! Not only on the tumor shrinkage, but the upcoming marriage.
The issues with your onc. explain a lot about your aprehensions about doing the IL-2. I had one nurse I refused to have again. I won't go into details other than the ability to communicate with all your docs on the IL-2 team is madatory. She wasn't with the program on that, so I fired her.
If it helps, there are many centers that do an excellent job of administering IL-2. You have to have the trust however. I remember Diane who had a single lung met pop up after being NED for years. She spent quite a bit of time debating her options and finally underwent IL-2.
I think she initially became NED as a result but had a rare stroke right after being discharged after the first half of her treatment. It was pretty bad. She never got over it fully, and unfortunately passed away shortly afterwards with brain mets etc. I was in shock and am still saddended by the unexpected turn of events.
If you don't have good communication with your team, most, including myself would have wondered if it was preventable versus dumb luck. If there is doubt and mistrust and an unforseen devastating complication comes up, then what? I wouldn't want to be in that situation.
If on the other hand, if we were working well as a team and it happened, it is a less bitter pill to swallow and would ease my path to dealing with getting past it and moving on to plan B.
Good IL-2 centers have their A game all the time. For me in Hawaii, they made sure all the specialist were in town for my entire course of treatment, both rounds. Other centers have very strict protocols to ensure the best care, no matter what time of year or day it is. I often was getting a bag around 2-4 AM, and stayed over the course of a weekend or two.
You have much on your plate, but I see a big peice of dessert on it! I am happy for your daughter, and hope you can take the time to grasp the good times inbetween this fight.
Again, take care of yourself as well 🙂
Kim K
-
- December 11, 2013 at 8:31 am
Congratulations for your family! Not only on the tumor shrinkage, but the upcoming marriage.
The issues with your onc. explain a lot about your aprehensions about doing the IL-2. I had one nurse I refused to have again. I won't go into details other than the ability to communicate with all your docs on the IL-2 team is madatory. She wasn't with the program on that, so I fired her.
If it helps, there are many centers that do an excellent job of administering IL-2. You have to have the trust however. I remember Diane who had a single lung met pop up after being NED for years. She spent quite a bit of time debating her options and finally underwent IL-2.
I think she initially became NED as a result but had a rare stroke right after being discharged after the first half of her treatment. It was pretty bad. She never got over it fully, and unfortunately passed away shortly afterwards with brain mets etc. I was in shock and am still saddended by the unexpected turn of events.
If you don't have good communication with your team, most, including myself would have wondered if it was preventable versus dumb luck. If there is doubt and mistrust and an unforseen devastating complication comes up, then what? I wouldn't want to be in that situation.
If on the other hand, if we were working well as a team and it happened, it is a less bitter pill to swallow and would ease my path to dealing with getting past it and moving on to plan B.
Good IL-2 centers have their A game all the time. For me in Hawaii, they made sure all the specialist were in town for my entire course of treatment, both rounds. Other centers have very strict protocols to ensure the best care, no matter what time of year or day it is. I often was getting a bag around 2-4 AM, and stayed over the course of a weekend or two.
You have much on your plate, but I see a big peice of dessert on it! I am happy for your daughter, and hope you can take the time to grasp the good times inbetween this fight.
Again, take care of yourself as well 🙂
Kim K
-
- December 11, 2013 at 8:31 am
Congratulations for your family! Not only on the tumor shrinkage, but the upcoming marriage.
The issues with your onc. explain a lot about your aprehensions about doing the IL-2. I had one nurse I refused to have again. I won't go into details other than the ability to communicate with all your docs on the IL-2 team is madatory. She wasn't with the program on that, so I fired her.
If it helps, there are many centers that do an excellent job of administering IL-2. You have to have the trust however. I remember Diane who had a single lung met pop up after being NED for years. She spent quite a bit of time debating her options and finally underwent IL-2.
I think she initially became NED as a result but had a rare stroke right after being discharged after the first half of her treatment. It was pretty bad. She never got over it fully, and unfortunately passed away shortly afterwards with brain mets etc. I was in shock and am still saddended by the unexpected turn of events.
If you don't have good communication with your team, most, including myself would have wondered if it was preventable versus dumb luck. If there is doubt and mistrust and an unforseen devastating complication comes up, then what? I wouldn't want to be in that situation.
If on the other hand, if we were working well as a team and it happened, it is a less bitter pill to swallow and would ease my path to dealing with getting past it and moving on to plan B.
Good IL-2 centers have their A game all the time. For me in Hawaii, they made sure all the specialist were in town for my entire course of treatment, both rounds. Other centers have very strict protocols to ensure the best care, no matter what time of year or day it is. I often was getting a bag around 2-4 AM, and stayed over the course of a weekend or two.
You have much on your plate, but I see a big peice of dessert on it! I am happy for your daughter, and hope you can take the time to grasp the good times inbetween this fight.
Again, take care of yourself as well 🙂
Kim K
-
- December 9, 2013 at 5:21 pm
Kim, What a remarkable story and thanks so much for sharing it with me.
What is exciting is that this trial combines both Z and IL2, with the hope of course that it turns the 5% into 50%. Wouldn't that be amazing for all of us? In my daughters case may never really know if it is the Z or the IL2 or both that made the tumor go away. I guess thats a great problem to have. We are fortunate to know in advance that the Z is working, as she has stopped coughing and had a scan to back it up.
The trial format has backed us up against the holidays, giving us little time get another opinion. I hate the idea of being in intensive care when the hospital may not have the A team on duty. Also, unfortunately, we don't have a what I would call a great relationship with our oncologist (who credentials are impecable) but who is a poor communicator and typically leaves her checkups to his PA. Inexcusable I think and something we must deal with soon. Its a marriage of convenience to be honest. Anyway, it makes me wonder if he'll really be there everyday as we have been promised, including New Years Day. I guess this is where the trust needs to come in. I've challenged the start dates until I'm blue in the face. Just the luck of the draw I guess
On a happy note, my daughter got engaged yesterday. She has much to fight for.
Thanks again for your great advice. Brad
-
- December 9, 2013 at 10:03 am
Hi Brad,
Yes, I would do IL-2 again in spite of the toxicity. Yes you do get very sick, but you are in the ICU being closely monitored. I had an excellent team of doctors there to keep me alive. They were there before each and every dose, or at least called before a group decision was made to give me another bag. You have to have trust. Period.
Many oncs will scare the Sh#@!*! out of you and may even shy away from the treatment. I was scared and am in the medical profession. I went with the numbers. Again, to date, NOTHING so far has a co-hort of proven NED survivors of over 20+ years. Granted it is a small number, but it exists. Nothing else to date can touch that.
It is tough but doable and there are many here that will help prepare your family for the side effects should your daughter decide to go that route. As a patient, I was premeded and on at least 7 other meds to counteract the side effects. Yes, I had them all. Most of which were controlled with meds. I kept my eye on the prize, my 2 young girls at the time, 2 & 4 years old. I am a single parent.
I was destined to die, therefore if I came close to death during treatment, and yet inspite of IL-2 went the way of the 94-97% of mel patients, at least I can say I did my best. I had a pulmonary embolus the night after my lung surgery. While gasping for air and unable to breath while in the CT tube, I became angry because I never had the chance to fight my mel. IL-2 gave me that chance. It was worth it. If I failed at least I still had the newer drugs as my ace in the hole. The B-raf inhibitors had just started phase III trials and I was B-raf pos.
I debated surgery to become NED, but would always have the worry that it would come back because I didn't do anything systemic. You can do surgery later to remove any stubborn mets if otherwise stable, as well as save the newer drugs and trials as her ace in the hole.
It either works or it doesn't. You find out quickly. You can always enter another trial if it fails. If you wait too long and develop a high tumor burden, it is very very rare that IL-2 will give you a complete response, and you will probably be too sick to undergo treatment. My oncs knew of these great drugs that were in trials, yet they said the first course they would do if it was them, was IL-2. IL-2 is an upfront treatment for strong, healthy, low tumor burden patients without brain mets, pretty much ONLY.
I even flew to UCLA for a second opinion with Dr. Ribas' group.
For me it was harder on my mom to watch me be so sick. Basically I just slept, had the runs real bad and throat / mouth ulcers that bothered me. My heart arrythmias were annoying as well (only at the end of my last cycle), and a little spooky since I knew how to read an ECG. Not a heart rythm I would be happy to see in one of my veterinary patients. I also felt my heart flip-flopping while slamming agianst my chest wall which made it impossible to sleep. I guess that is why I had my day dream. Yes I had many more side effects, but my treatment was stopped as a result and issues quickly resolved, and I wasn't in any pain (except sore throat and bum). After the 3rd day I just slept and used the bathroom……
The so-called single hallucination I had was like having a dream but woke up mid dream. I was talking to my 2 dogs asking them if they wanted to go to the lake to swim and play. Mom interrupted me and asked if I knew where I was. Oh, damn why did she have to wake me up, it was a really good dream! I guess her feelings were hurt because I was dreaming about my dogs – LOL.
The other side effects I didn't notice eventhough I knew how close to the edge of life I was walking on. The IL-2 pushed me into the chasm of the afterworld, but the bungee cord my doctors attached to me securely always snatched me back.
I admit, if I was a partial responder, it would have taken all of the few months between cycles to push myself to go back for another round. I am glad I didn't have to go there. My 2 girls and MPIP really did give me the strength to perservere. I thought of my other friends and warriors who lead the gallant fight before me, and I drew from their courage. Cindy Trauble, Glenda, Lori P, Diane from Spokane, Carole Kelley, the entire Asheville gange, Allen Carr, Stan N, AK mom, Debbie R, Janner, Charlie S, Marie M, Barbie Girl and on and on, I can't even begin to name them all. It was as if they were there carrying me onwards when I couldn't do it myself. We spent hours in chat, something that unfortunately isn't as acitve anymore. Hopefully that will change with each update to this site.
This place gave me the courage. I never thought I would be an "old timer", but after 12 years from my initial diagnosis, I guess I am…..
Regardless, whatever her decision, never ever look back and play the shouida coulda game, it serves no purpose. She needs to buy into her treatment 100% whatever it is. You will get support no matter which way her path takes her. I look at the numbers. I just hate it when an otherwise ideal patient turns IL-2 down because of fear alone. Make a concious decision not to do it for valid reasons, just as you decide what treatment to ultimately pursue.
Sorry, but over the past couple of years I have seen a vailid option being marginalized with all these great drugs. Unfortunately, just like IL-2, there are very few long-term survivors and there hasn't been enough time to see just how durable those long term remissions are. I truely hope they are though…..
Lastly, a few months ago I think POW posted the latest ASCO proceedings and one of the topics was a flowchart of treatment for stage III, IV patients based on what is known about all the drug classes. It may help with her decision.
Hugs from Hawaii,
Kim K
-
- December 9, 2013 at 10:03 am
Hi Brad,
Yes, I would do IL-2 again in spite of the toxicity. Yes you do get very sick, but you are in the ICU being closely monitored. I had an excellent team of doctors there to keep me alive. They were there before each and every dose, or at least called before a group decision was made to give me another bag. You have to have trust. Period.
Many oncs will scare the Sh#@!*! out of you and may even shy away from the treatment. I was scared and am in the medical profession. I went with the numbers. Again, to date, NOTHING so far has a co-hort of proven NED survivors of over 20+ years. Granted it is a small number, but it exists. Nothing else to date can touch that.
It is tough but doable and there are many here that will help prepare your family for the side effects should your daughter decide to go that route. As a patient, I was premeded and on at least 7 other meds to counteract the side effects. Yes, I had them all. Most of which were controlled with meds. I kept my eye on the prize, my 2 young girls at the time, 2 & 4 years old. I am a single parent.
I was destined to die, therefore if I came close to death during treatment, and yet inspite of IL-2 went the way of the 94-97% of mel patients, at least I can say I did my best. I had a pulmonary embolus the night after my lung surgery. While gasping for air and unable to breath while in the CT tube, I became angry because I never had the chance to fight my mel. IL-2 gave me that chance. It was worth it. If I failed at least I still had the newer drugs as my ace in the hole. The B-raf inhibitors had just started phase III trials and I was B-raf pos.
I debated surgery to become NED, but would always have the worry that it would come back because I didn't do anything systemic. You can do surgery later to remove any stubborn mets if otherwise stable, as well as save the newer drugs and trials as her ace in the hole.
It either works or it doesn't. You find out quickly. You can always enter another trial if it fails. If you wait too long and develop a high tumor burden, it is very very rare that IL-2 will give you a complete response, and you will probably be too sick to undergo treatment. My oncs knew of these great drugs that were in trials, yet they said the first course they would do if it was them, was IL-2. IL-2 is an upfront treatment for strong, healthy, low tumor burden patients without brain mets, pretty much ONLY.
I even flew to UCLA for a second opinion with Dr. Ribas' group.
For me it was harder on my mom to watch me be so sick. Basically I just slept, had the runs real bad and throat / mouth ulcers that bothered me. My heart arrythmias were annoying as well (only at the end of my last cycle), and a little spooky since I knew how to read an ECG. Not a heart rythm I would be happy to see in one of my veterinary patients. I also felt my heart flip-flopping while slamming agianst my chest wall which made it impossible to sleep. I guess that is why I had my day dream. Yes I had many more side effects, but my treatment was stopped as a result and issues quickly resolved, and I wasn't in any pain (except sore throat and bum). After the 3rd day I just slept and used the bathroom……
The so-called single hallucination I had was like having a dream but woke up mid dream. I was talking to my 2 dogs asking them if they wanted to go to the lake to swim and play. Mom interrupted me and asked if I knew where I was. Oh, damn why did she have to wake me up, it was a really good dream! I guess her feelings were hurt because I was dreaming about my dogs – LOL.
The other side effects I didn't notice eventhough I knew how close to the edge of life I was walking on. The IL-2 pushed me into the chasm of the afterworld, but the bungee cord my doctors attached to me securely always snatched me back.
I admit, if I was a partial responder, it would have taken all of the few months between cycles to push myself to go back for another round. I am glad I didn't have to go there. My 2 girls and MPIP really did give me the strength to perservere. I thought of my other friends and warriors who lead the gallant fight before me, and I drew from their courage. Cindy Trauble, Glenda, Lori P, Diane from Spokane, Carole Kelley, the entire Asheville gange, Allen Carr, Stan N, AK mom, Debbie R, Janner, Charlie S, Marie M, Barbie Girl and on and on, I can't even begin to name them all. It was as if they were there carrying me onwards when I couldn't do it myself. We spent hours in chat, something that unfortunately isn't as acitve anymore. Hopefully that will change with each update to this site.
This place gave me the courage. I never thought I would be an "old timer", but after 12 years from my initial diagnosis, I guess I am…..
Regardless, whatever her decision, never ever look back and play the shouida coulda game, it serves no purpose. She needs to buy into her treatment 100% whatever it is. You will get support no matter which way her path takes her. I look at the numbers. I just hate it when an otherwise ideal patient turns IL-2 down because of fear alone. Make a concious decision not to do it for valid reasons, just as you decide what treatment to ultimately pursue.
Sorry, but over the past couple of years I have seen a vailid option being marginalized with all these great drugs. Unfortunately, just like IL-2, there are very few long-term survivors and there hasn't been enough time to see just how durable those long term remissions are. I truely hope they are though…..
Lastly, a few months ago I think POW posted the latest ASCO proceedings and one of the topics was a flowchart of treatment for stage III, IV patients based on what is known about all the drug classes. It may help with her decision.
Hugs from Hawaii,
Kim K
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