› Forums › General Melanoma Community › Too late for clinical trials
- This topic has 27 replies, 7 voices, and was last updated 13 years, 1 month ago by
kylez.
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- January 4, 2013 at 10:57 am
MRI and CT scans in early December showed that all of my brother's mets, including his brain mets, were stable except for one lung met which increased from 3 cm to 4 cm. His oncologist felt that the melanoma was becoming resistant to Zelboraf so he took him off Z for 30 days to prepare for either ipi or a clinical trial. Three weeks later, I noticed my brother was again experiencing speech aphasia and mental confusion and I worried that the brain tumors were coming back. Sure enough, they are. My brother had a brain scan at Moffitt yesterday to prepare for the LGX818 clinical trial.
MRI and CT scans in early December showed that all of my brother's mets, including his brain mets, were stable except for one lung met which increased from 3 cm to 4 cm. His oncologist felt that the melanoma was becoming resistant to Zelboraf so he took him off Z for 30 days to prepare for either ipi or a clinical trial. Three weeks later, I noticed my brother was again experiencing speech aphasia and mental confusion and I worried that the brain tumors were coming back. Sure enough, they are. My brother had a brain scan at Moffitt yesterday to prepare for the LGX818 clinical trial. They found 6 brain mets– 2 old ones growing and 4 new ones. They are located all over his brain. So clinical trials are out. Damn!
My brother still wants to try ipi at the VA. He is supposed to start that next week. But given how fast his melanoma is progressing now, we're all feeling frightened and discouraged.
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- January 4, 2013 at 1:47 pm
Dear POW,
I was so sorry to read this. I've come to know your dedicated commitment to your brother over the last few weeks and, from our exchanges, you have become a very real person to me for whom I have a great deal of respect. Your brother is a very courageous man in all he has gone through and his willingness to continue the fight. It was sad for me to read of this recent activity in the brain and that it eliminates the clinical trial possibility. I will be praying for both of you today and in the days to come!
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- January 4, 2013 at 1:47 pm
Dear POW,
I was so sorry to read this. I've come to know your dedicated commitment to your brother over the last few weeks and, from our exchanges, you have become a very real person to me for whom I have a great deal of respect. Your brother is a very courageous man in all he has gone through and his willingness to continue the fight. It was sad for me to read of this recent activity in the brain and that it eliminates the clinical trial possibility. I will be praying for both of you today and in the days to come!
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- January 4, 2013 at 1:47 pm
Dear POW,
I was so sorry to read this. I've come to know your dedicated commitment to your brother over the last few weeks and, from our exchanges, you have become a very real person to me for whom I have a great deal of respect. Your brother is a very courageous man in all he has gone through and his willingness to continue the fight. It was sad for me to read of this recent activity in the brain and that it eliminates the clinical trial possibility. I will be praying for both of you today and in the days to come!
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- January 4, 2013 at 5:33 pm
So very sorry to hear this. Is your brother a candidate for SRS on any of the brain mets?? I’m attaching an article that talks about improved survival by combining Radiation & Ipi and there are several trials in place studying it along with a few institutions trying it as standard practice. I ended up doing SRS between Ipi Rnd 1 & 2, scan results soon.http://thejns.org/doi/pdf/10.3171/2012.5.JNS111929
Amy
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- January 4, 2013 at 5:33 pm
So very sorry to hear this. Is your brother a candidate for SRS on any of the brain mets?? I’m attaching an article that talks about improved survival by combining Radiation & Ipi and there are several trials in place studying it along with a few institutions trying it as standard practice. I ended up doing SRS between Ipi Rnd 1 & 2, scan results soon.http://thejns.org/doi/pdf/10.3171/2012.5.JNS111929
Amy
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- January 4, 2013 at 5:33 pm
So very sorry to hear this. Is your brother a candidate for SRS on any of the brain mets?? I’m attaching an article that talks about improved survival by combining Radiation & Ipi and there are several trials in place studying it along with a few institutions trying it as standard practice. I ended up doing SRS between Ipi Rnd 1 & 2, scan results soon.http://thejns.org/doi/pdf/10.3171/2012.5.JNS111929
Amy
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- January 4, 2013 at 7:48 pm
Dear POW,
So sorry you are dealing with this latest blow and I can only imagine how scared and discouraged you and your brother must feel.
I have read on this board time and time again, the many success stories, when the patient was feeling no hope and the next treatment they tried was… the "magic potion" that worked! One particular survivor wrote "don't underestimate the standard treatments" so many are believing in the clinical trials as the only hope, which is not true, many have seen long remissions from standard treatments. I believe the survivor is Charlie S. although I cannot find the exact post! You might be inspired by Charlie S. post titled "Stage IV…Roll Call for the Undead" … many stage IV survivors talk about their journey with melanoma, treatments and the many obstacles they have faced. The survivors are new and old but all share a common strength of a fierce and determined attitude to fight back!
Sadly, some of these warriors have lost their battle but not without leaving behind a battle note for us, indicating a weak link in melanoma's scheme that we have all benefited from in our own battle and inspired so many of us here with incredible knowledge, hope and renewed spirit to fight back with everything we've got! Charlie S. put's it into perspective from a post on 10-31-2010 to Emily, "Stage IV advice, not medical but mental" which I encourage you to read…..and all his posts for that matter! He has a good way of taking the fear out of this disease and replacing it with a fierce determined spirit, that doesn't back down!
Wishing your brother success in the next treatment path and thoughts of thanks to those who have gone on before us!
Swanee
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- January 4, 2013 at 7:48 pm
Dear POW,
So sorry you are dealing with this latest blow and I can only imagine how scared and discouraged you and your brother must feel.
I have read on this board time and time again, the many success stories, when the patient was feeling no hope and the next treatment they tried was… the "magic potion" that worked! One particular survivor wrote "don't underestimate the standard treatments" so many are believing in the clinical trials as the only hope, which is not true, many have seen long remissions from standard treatments. I believe the survivor is Charlie S. although I cannot find the exact post! You might be inspired by Charlie S. post titled "Stage IV…Roll Call for the Undead" … many stage IV survivors talk about their journey with melanoma, treatments and the many obstacles they have faced. The survivors are new and old but all share a common strength of a fierce and determined attitude to fight back!
Sadly, some of these warriors have lost their battle but not without leaving behind a battle note for us, indicating a weak link in melanoma's scheme that we have all benefited from in our own battle and inspired so many of us here with incredible knowledge, hope and renewed spirit to fight back with everything we've got! Charlie S. put's it into perspective from a post on 10-31-2010 to Emily, "Stage IV advice, not medical but mental" which I encourage you to read…..and all his posts for that matter! He has a good way of taking the fear out of this disease and replacing it with a fierce determined spirit, that doesn't back down!
Wishing your brother success in the next treatment path and thoughts of thanks to those who have gone on before us!
Swanee
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- January 5, 2013 at 4:06 am
Definitely one should read Charley S's postings. Charley is a true fighter and a good though often, blunt man man with extremely valid comments. I have often written about not totally ruling out the old, toxic, seldom working treatments. They do sometimes do miracles for some patients, just wish we knew why they work on the few they do. (Love to be able to cherrypick treatments!)
If my tumors were continuing to grow, I would look first at anti-PD-1 treatments. There are 5 different drugs being tested for anti-PD-1. If one has PDL-1 they are more likely to be successful. I haven't had time to look up what PD-1 trials can be entered if one has brain tumors. -
- January 5, 2013 at 4:06 am
Definitely one should read Charley S's postings. Charley is a true fighter and a good though often, blunt man man with extremely valid comments. I have often written about not totally ruling out the old, toxic, seldom working treatments. They do sometimes do miracles for some patients, just wish we knew why they work on the few they do. (Love to be able to cherrypick treatments!)
If my tumors were continuing to grow, I would look first at anti-PD-1 treatments. There are 5 different drugs being tested for anti-PD-1. If one has PDL-1 they are more likely to be successful. I haven't had time to look up what PD-1 trials can be entered if one has brain tumors. -
- January 5, 2013 at 4:06 am
Definitely one should read Charley S's postings. Charley is a true fighter and a good though often, blunt man man with extremely valid comments. I have often written about not totally ruling out the old, toxic, seldom working treatments. They do sometimes do miracles for some patients, just wish we knew why they work on the few they do. (Love to be able to cherrypick treatments!)
If my tumors were continuing to grow, I would look first at anti-PD-1 treatments. There are 5 different drugs being tested for anti-PD-1. If one has PDL-1 they are more likely to be successful. I haven't had time to look up what PD-1 trials can be entered if one has brain tumors.
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- January 4, 2013 at 7:48 pm
Dear POW,
So sorry you are dealing with this latest blow and I can only imagine how scared and discouraged you and your brother must feel.
I have read on this board time and time again, the many success stories, when the patient was feeling no hope and the next treatment they tried was… the "magic potion" that worked! One particular survivor wrote "don't underestimate the standard treatments" so many are believing in the clinical trials as the only hope, which is not true, many have seen long remissions from standard treatments. I believe the survivor is Charlie S. although I cannot find the exact post! You might be inspired by Charlie S. post titled "Stage IV…Roll Call for the Undead" … many stage IV survivors talk about their journey with melanoma, treatments and the many obstacles they have faced. The survivors are new and old but all share a common strength of a fierce and determined attitude to fight back!
Sadly, some of these warriors have lost their battle but not without leaving behind a battle note for us, indicating a weak link in melanoma's scheme that we have all benefited from in our own battle and inspired so many of us here with incredible knowledge, hope and renewed spirit to fight back with everything we've got! Charlie S. put's it into perspective from a post on 10-31-2010 to Emily, "Stage IV advice, not medical but mental" which I encourage you to read…..and all his posts for that matter! He has a good way of taking the fear out of this disease and replacing it with a fierce determined spirit, that doesn't back down!
Wishing your brother success in the next treatment path and thoughts of thanks to those who have gone on before us!
Swanee
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- January 5, 2013 at 4:02 am
Hi POW,
I'm sorry your brother is hitting this setback.
My most recent treatment (for 1 recurring and 3 new brain mets) was a double craniotomy for the 2 biggest, then 17 days later Gamma Knife on the 2 tumor beds and 2 other mets, then 10 days later started IPI. I seem to have gotten lucky / good response so far as that was all in June 2011.
Each time I've had brain met(s) it's been a set back. They grew far faster than melanoma in my body, seemingly doubling in size in a couple of weeks, which in my case would have been too long for IPI to act on its own.
If brain surgery and/or SRS (my rad oncologist likes Gamma Knife because of the increased accuracy from the metal frame that goes on your head) makes sense does your brother have options to choose from (like Moffitt) or is the VA his only choice for treatment? -
- January 5, 2013 at 4:02 am
Hi POW,
I'm sorry your brother is hitting this setback.
My most recent treatment (for 1 recurring and 3 new brain mets) was a double craniotomy for the 2 biggest, then 17 days later Gamma Knife on the 2 tumor beds and 2 other mets, then 10 days later started IPI. I seem to have gotten lucky / good response so far as that was all in June 2011.
Each time I've had brain met(s) it's been a set back. They grew far faster than melanoma in my body, seemingly doubling in size in a couple of weeks, which in my case would have been too long for IPI to act on its own.
If brain surgery and/or SRS (my rad oncologist likes Gamma Knife because of the increased accuracy from the metal frame that goes on your head) makes sense does your brother have options to choose from (like Moffitt) or is the VA his only choice for treatment? -
- January 5, 2013 at 4:02 am
Hi POW,
I'm sorry your brother is hitting this setback.
My most recent treatment (for 1 recurring and 3 new brain mets) was a double craniotomy for the 2 biggest, then 17 days later Gamma Knife on the 2 tumor beds and 2 other mets, then 10 days later started IPI. I seem to have gotten lucky / good response so far as that was all in June 2011.
Each time I've had brain met(s) it's been a set back. They grew far faster than melanoma in my body, seemingly doubling in size in a couple of weeks, which in my case would have been too long for IPI to act on its own.
If brain surgery and/or SRS (my rad oncologist likes Gamma Knife because of the increased accuracy from the metal frame that goes on your head) makes sense does your brother have options to choose from (like Moffitt) or is the VA his only choice for treatment? -
- January 5, 2013 at 11:34 pm
I haven't got any advice but want you to know that I am thinking of your brother, you and your family and willing something good to happen.
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- January 6, 2013 at 5:04 am
Hi, Folks-Thank you all for your support and advice. I really needed it just now and I feel comforted by your concern and your prayers. Thank you.As far as treatment options are concerned, my brother's choices are limited. Fortunately, the Tampa VA Medical Center has a close relationship with Moffitt. His VA doctors have been very good about referring my brother to Moffitt when necessary– for clinical trial information, cyber knife treatment, etc. It was Dr. Gibney at Moffitt who told us that all of their anti-PD-1 trials are fully subscribed. Actually, they are now thinking about only allowing patients to enter new anti-PD-1 trials after they have tried and failed ipi. I don't know why or whether this has actually been decided. Just thought you should know.The only trials my brother was elegible for were LGX818 (a BRAF inhibitor) or another trail combining ipi + some other immune modulator (I don't remember the name). However, when Dr. Gibney saw the brain mets a few days later, that was the end of all clinical trial possibilities at Moffitt.I asked Dr. Gibney about SRS but he was against it. My brother already had WBR in July and one SRS in October. I suspect that with so many widely dispersed brain mets appearing so quickly it means that there are others too small to see yet. WBR might get them, but SRS won't. And since he already had WBR he can't have it again. His only options now are FDA approved treatments at the VA– which means ipi or standard chemo. My brother has chosen ipi.In the last week, we have noticed worsening speech aphasia and more mental confusion– he is unable to back the golf cart out of the garage, for example, or to measure the correct dose of insulin. He can barely walk because his right foot is dragging. Most heartbreaking was that we had to take away his car keys today. During his Zelboraf-induced remission his driving wasn't great, but it wasn't all that bad. But now he would be a serious hazard on the road. When we talked to him about it this morning, he said we were flat wrong and he could still drive (poor judgement is also associated with right hemisphere brain mets). The family truly believes that if he hurt anyone while driving, we would be morally responsible because we know how bad off he is. So we hid his car keys and now he is not speaking to any of us. Gosh! I know how important driving is to him and wresting contol like this makes me feel absolutely terrible. Having him not speaking to me is even worse. But enabling him to drive would just not be fair to the rest of the community. I told him that if ipi works and his brain mets get back under control, he will be able to drive again. I so hope and pray that is what transpires! The many successful ipi warriors here continue to give me hope. -
- January 6, 2013 at 5:04 am
Hi, Folks-Thank you all for your support and advice. I really needed it just now and I feel comforted by your concern and your prayers. Thank you.As far as treatment options are concerned, my brother's choices are limited. Fortunately, the Tampa VA Medical Center has a close relationship with Moffitt. His VA doctors have been very good about referring my brother to Moffitt when necessary– for clinical trial information, cyber knife treatment, etc. It was Dr. Gibney at Moffitt who told us that all of their anti-PD-1 trials are fully subscribed. Actually, they are now thinking about only allowing patients to enter new anti-PD-1 trials after they have tried and failed ipi. I don't know why or whether this has actually been decided. Just thought you should know.The only trials my brother was elegible for were LGX818 (a BRAF inhibitor) or another trail combining ipi + some other immune modulator (I don't remember the name). However, when Dr. Gibney saw the brain mets a few days later, that was the end of all clinical trial possibilities at Moffitt.I asked Dr. Gibney about SRS but he was against it. My brother already had WBR in July and one SRS in October. I suspect that with so many widely dispersed brain mets appearing so quickly it means that there are others too small to see yet. WBR might get them, but SRS won't. And since he already had WBR he can't have it again. His only options now are FDA approved treatments at the VA– which means ipi or standard chemo. My brother has chosen ipi.In the last week, we have noticed worsening speech aphasia and more mental confusion– he is unable to back the golf cart out of the garage, for example, or to measure the correct dose of insulin. He can barely walk because his right foot is dragging. Most heartbreaking was that we had to take away his car keys today. During his Zelboraf-induced remission his driving wasn't great, but it wasn't all that bad. But now he would be a serious hazard on the road. When we talked to him about it this morning, he said we were flat wrong and he could still drive (poor judgement is also associated with right hemisphere brain mets). The family truly believes that if he hurt anyone while driving, we would be morally responsible because we know how bad off he is. So we hid his car keys and now he is not speaking to any of us. Gosh! I know how important driving is to him and wresting contol like this makes me feel absolutely terrible. Having him not speaking to me is even worse. But enabling him to drive would just not be fair to the rest of the community. I told him that if ipi works and his brain mets get back under control, he will be able to drive again. I so hope and pray that is what transpires! The many successful ipi warriors here continue to give me hope. -
- January 7, 2013 at 7:08 am
I wish your brother a good response with IPI. It sounds like he's on track to get his first infusion very soon. There seems to be quite a bit of evidence that IPI's effects work just as well for brain as in the body.
The issues you're going through as caretaker sound very rough but It sounds like you and your family did the right thing on the issue of driving, under very trying circumstances.
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- January 7, 2013 at 7:08 am
I wish your brother a good response with IPI. It sounds like he's on track to get his first infusion very soon. There seems to be quite a bit of evidence that IPI's effects work just as well for brain as in the body.
The issues you're going through as caretaker sound very rough but It sounds like you and your family did the right thing on the issue of driving, under very trying circumstances.
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- January 7, 2013 at 7:08 am
I wish your brother a good response with IPI. It sounds like he's on track to get his first infusion very soon. There seems to be quite a bit of evidence that IPI's effects work just as well for brain as in the body.
The issues you're going through as caretaker sound very rough but It sounds like you and your family did the right thing on the issue of driving, under very trying circumstances.
-
- January 6, 2013 at 5:04 am
Hi, Folks-Thank you all for your support and advice. I really needed it just now and I feel comforted by your concern and your prayers. Thank you.As far as treatment options are concerned, my brother's choices are limited. Fortunately, the Tampa VA Medical Center has a close relationship with Moffitt. His VA doctors have been very good about referring my brother to Moffitt when necessary– for clinical trial information, cyber knife treatment, etc. It was Dr. Gibney at Moffitt who told us that all of their anti-PD-1 trials are fully subscribed. Actually, they are now thinking about only allowing patients to enter new anti-PD-1 trials after they have tried and failed ipi. I don't know why or whether this has actually been decided. Just thought you should know.The only trials my brother was elegible for were LGX818 (a BRAF inhibitor) or another trail combining ipi + some other immune modulator (I don't remember the name). However, when Dr. Gibney saw the brain mets a few days later, that was the end of all clinical trial possibilities at Moffitt.I asked Dr. Gibney about SRS but he was against it. My brother already had WBR in July and one SRS in October. I suspect that with so many widely dispersed brain mets appearing so quickly it means that there are others too small to see yet. WBR might get them, but SRS won't. And since he already had WBR he can't have it again. His only options now are FDA approved treatments at the VA– which means ipi or standard chemo. My brother has chosen ipi.In the last week, we have noticed worsening speech aphasia and more mental confusion– he is unable to back the golf cart out of the garage, for example, or to measure the correct dose of insulin. He can barely walk because his right foot is dragging. Most heartbreaking was that we had to take away his car keys today. During his Zelboraf-induced remission his driving wasn't great, but it wasn't all that bad. But now he would be a serious hazard on the road. When we talked to him about it this morning, he said we were flat wrong and he could still drive (poor judgement is also associated with right hemisphere brain mets). The family truly believes that if he hurt anyone while driving, we would be morally responsible because we know how bad off he is. So we hid his car keys and now he is not speaking to any of us. Gosh! I know how important driving is to him and wresting contol like this makes me feel absolutely terrible. Having him not speaking to me is even worse. But enabling him to drive would just not be fair to the rest of the community. I told him that if ipi works and his brain mets get back under control, he will be able to drive again. I so hope and pray that is what transpires! The many successful ipi warriors here continue to give me hope.
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