› Forums › General Melanoma Community › Trials for patients who are NED
- This topic has 33 replies, 5 voices, and was last updated 11 years, 11 months ago by
Randy437.
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- June 20, 2012 at 1:17 pm
I have had single mets removed from both lungs, brain, and small intestine. I've been NED for 2 1/2 years. Is anyone aware of trials for NED patients? I do not have the BRAF mutation. Thank you.
I have had single mets removed from both lungs, brain, and small intestine. I've been NED for 2 1/2 years. Is anyone aware of trials for NED patients? I do not have the BRAF mutation. Thank you.
- Replies
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- June 20, 2012 at 4:54 pm
Randy,
My husband also had lung mets and the last mets (2 years after the lung mets) were in the small intestine which was almost 3 years ago this July. He has NED almost 3 years and we pray he stays that way. We go to NIH and have the same question at every appointment and it's always the same answer no. They have nothing for him to do and they don't offer anything.
Just curious, was your last met and surgery in your small intestine. I wonder if there is a pattern of how melanoma metastisizes (sp).
Rebecca
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- June 20, 2012 at 4:54 pm
Randy,
My husband also had lung mets and the last mets (2 years after the lung mets) were in the small intestine which was almost 3 years ago this July. He has NED almost 3 years and we pray he stays that way. We go to NIH and have the same question at every appointment and it's always the same answer no. They have nothing for him to do and they don't offer anything.
Just curious, was your last met and surgery in your small intestine. I wonder if there is a pattern of how melanoma metastisizes (sp).
Rebecca
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- June 20, 2012 at 4:54 pm
Randy,
My husband also had lung mets and the last mets (2 years after the lung mets) were in the small intestine which was almost 3 years ago this July. He has NED almost 3 years and we pray he stays that way. We go to NIH and have the same question at every appointment and it's always the same answer no. They have nothing for him to do and they don't offer anything.
Just curious, was your last met and surgery in your small intestine. I wonder if there is a pattern of how melanoma metastisizes (sp).
Rebecca
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- June 20, 2012 at 4:54 pm
Randy,
My husband also had lung mets and the last mets (2 years after the lung mets) were in the small intestine which was almost 3 years ago this July. He has NED almost 3 years and we pray he stays that way. We go to NIH and have the same question at every appointment and it's always the same answer no. They have nothing for him to do and they don't offer anything.
Just curious, was your last met and surgery in your small intestine. I wonder if there is a pattern of how melanoma metastisizes (sp).
Rebecca
-
- June 20, 2012 at 4:54 pm
Randy,
My husband also had lung mets and the last mets (2 years after the lung mets) were in the small intestine which was almost 3 years ago this July. He has NED almost 3 years and we pray he stays that way. We go to NIH and have the same question at every appointment and it's always the same answer no. They have nothing for him to do and they don't offer anything.
Just curious, was your last met and surgery in your small intestine. I wonder if there is a pattern of how melanoma metastisizes (sp).
Rebecca
-
- June 20, 2012 at 4:54 pm
Randy,
My husband also had lung mets and the last mets (2 years after the lung mets) were in the small intestine which was almost 3 years ago this July. He has NED almost 3 years and we pray he stays that way. We go to NIH and have the same question at every appointment and it's always the same answer no. They have nothing for him to do and they don't offer anything.
Just curious, was your last met and surgery in your small intestine. I wonder if there is a pattern of how melanoma metastisizes (sp).
Rebecca
-
- June 20, 2012 at 4:55 pm
Sorry for posting so many times, it didn't seem like it worked the first time.
Rebecca
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- June 20, 2012 at 4:55 pm
Sorry for posting so many times, it didn't seem like it worked the first time.
Rebecca
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- June 20, 2012 at 4:55 pm
Sorry for posting so many times, it didn't seem like it worked the first time.
Rebecca
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- June 20, 2012 at 5:02 pm
Hi Randy, my situation is somewhat similar to yours. I have previous lung and brain mets. I'm BRAF wild type as well. My lung mets are in remission (IL-2). I don't know if my brain mets are considered "NED" but they have been stable for awhile now (post-surgery, post-radiation, post-IPI).
I recently tried out the MRF's trial finder (http://www.melanoma.org/learn-more/melanoma-clinical-trials) and was really impressed — I can't believe I didn't try it before. I balked in the past because it required setting up a new account, but it returned 3 strong hits — not only the one trial I knew about but 2 more that I didn't.
1. http://clinicaltrials.gov/ct2/show/NCT01189383 "IL15 Dendritic Cell Vaccine for Patients With Resected Stage IIIc and Stage IV Melanoma"
2. http://clinicaltrials.gov/ct2/show/NCT01394016 "A Phase 1 Study of LY2835219 In Subjects With Advanced Cancer" I'd be interested what Jimmy B. thinks of this one, it's a CDK4/6 dual inhibitor. Also saw the following article about a form of the drug called LY2835219-MsOH, mainly saying that it crosses the blood-brain barrier, however I don't know if the MsOH form of the drug is the one used in the human trial above. "Abstract B234: LY2835219, a potent oral inhibitor of the cyclin-dependent kinases 4 and 6 (CDK4/6) that crosses the blood-brain barrier and demonstrates in vivo activity against intracranial human brain tumor xenografts." http://mct.aacrjournals.org/cgi/content/short/10/11_MeetingAbstracts/B234?rss=1,
3. Lynn's trial for BMS anti-PD1 with peptide vaccine, http://clinicaltrials.gov/ct2/show/NCT01176474 "Monoclonal Antibody Therapy and Vaccine Therapy in Treating Patients With Stage IV Melanoma That Has Been Removed By Surgery".
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- June 20, 2012 at 5:02 pm
Hi Randy, my situation is somewhat similar to yours. I have previous lung and brain mets. I'm BRAF wild type as well. My lung mets are in remission (IL-2). I don't know if my brain mets are considered "NED" but they have been stable for awhile now (post-surgery, post-radiation, post-IPI).
I recently tried out the MRF's trial finder (http://www.melanoma.org/learn-more/melanoma-clinical-trials) and was really impressed — I can't believe I didn't try it before. I balked in the past because it required setting up a new account, but it returned 3 strong hits — not only the one trial I knew about but 2 more that I didn't.
1. http://clinicaltrials.gov/ct2/show/NCT01189383 "IL15 Dendritic Cell Vaccine for Patients With Resected Stage IIIc and Stage IV Melanoma"
2. http://clinicaltrials.gov/ct2/show/NCT01394016 "A Phase 1 Study of LY2835219 In Subjects With Advanced Cancer" I'd be interested what Jimmy B. thinks of this one, it's a CDK4/6 dual inhibitor. Also saw the following article about a form of the drug called LY2835219-MsOH, mainly saying that it crosses the blood-brain barrier, however I don't know if the MsOH form of the drug is the one used in the human trial above. "Abstract B234: LY2835219, a potent oral inhibitor of the cyclin-dependent kinases 4 and 6 (CDK4/6) that crosses the blood-brain barrier and demonstrates in vivo activity against intracranial human brain tumor xenografts." http://mct.aacrjournals.org/cgi/content/short/10/11_MeetingAbstracts/B234?rss=1,
3. Lynn's trial for BMS anti-PD1 with peptide vaccine, http://clinicaltrials.gov/ct2/show/NCT01176474 "Monoclonal Antibody Therapy and Vaccine Therapy in Treating Patients With Stage IV Melanoma That Has Been Removed By Surgery".
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- June 20, 2012 at 5:02 pm
Hi Randy, my situation is somewhat similar to yours. I have previous lung and brain mets. I'm BRAF wild type as well. My lung mets are in remission (IL-2). I don't know if my brain mets are considered "NED" but they have been stable for awhile now (post-surgery, post-radiation, post-IPI).
I recently tried out the MRF's trial finder (http://www.melanoma.org/learn-more/melanoma-clinical-trials) and was really impressed — I can't believe I didn't try it before. I balked in the past because it required setting up a new account, but it returned 3 strong hits — not only the one trial I knew about but 2 more that I didn't.
1. http://clinicaltrials.gov/ct2/show/NCT01189383 "IL15 Dendritic Cell Vaccine for Patients With Resected Stage IIIc and Stage IV Melanoma"
2. http://clinicaltrials.gov/ct2/show/NCT01394016 "A Phase 1 Study of LY2835219 In Subjects With Advanced Cancer" I'd be interested what Jimmy B. thinks of this one, it's a CDK4/6 dual inhibitor. Also saw the following article about a form of the drug called LY2835219-MsOH, mainly saying that it crosses the blood-brain barrier, however I don't know if the MsOH form of the drug is the one used in the human trial above. "Abstract B234: LY2835219, a potent oral inhibitor of the cyclin-dependent kinases 4 and 6 (CDK4/6) that crosses the blood-brain barrier and demonstrates in vivo activity against intracranial human brain tumor xenografts." http://mct.aacrjournals.org/cgi/content/short/10/11_MeetingAbstracts/B234?rss=1,
3. Lynn's trial for BMS anti-PD1 with peptide vaccine, http://clinicaltrials.gov/ct2/show/NCT01176474 "Monoclonal Antibody Therapy and Vaccine Therapy in Treating Patients With Stage IV Melanoma That Has Been Removed By Surgery".
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- June 20, 2012 at 9:16 pm
I am in a NED trial. I was surgically resected in 2010 and started anti pd 1 and peptide trial at Moffitt….I have been NED for over 2 years and in week 90 of 128 week trial. you can find it at http://www.cancer.gov
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- June 20, 2012 at 9:16 pm
I am in a NED trial. I was surgically resected in 2010 and started anti pd 1 and peptide trial at Moffitt….I have been NED for over 2 years and in week 90 of 128 week trial. you can find it at http://www.cancer.gov
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- June 20, 2012 at 9:16 pm
I am in a NED trial. I was surgically resected in 2010 and started anti pd 1 and peptide trial at Moffitt….I have been NED for over 2 years and in week 90 of 128 week trial. you can find it at http://www.cancer.gov
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- June 21, 2012 at 1:21 am
I totally get what you are saying, I really do, but consider this.
Suppose you had a broken leg, were in a cast for six weeks while it healed and after that your leg was good and so was your mind. What preventative measure would you do so as not to get another broken leg?
Is there a clinical trial for that? No there is not. Yes indeed there is support and protocol for appropriate follow up care and prevention, but no trial for non broken leg people who previously had one.
By extension, there is no clinical trial for Melanoma Patients with no evidence of disease. Yes, there are accepted protocols in place for followup for such people, but there is no trial that accepts human beings as test subjects for a scientific experiment who have no clinical presentation of disease.
Is that fair because melanoma has a nasty way of coming back years from initial diagnosis? No, it is not. Should that aspect be studiied? Yes it should.
Is it right now? No.
Other than Astromerrs and Physicists, conventional thinking of science is looking forward. In the case of Melanoma, I would submit that some backward interpretations might be in order so as to truly assess why some, like you, have survived.
But today, there is no such logic applied to survivors and as such, no clinical trials to measure us..
May be old hat, but it is stil cut you, burn you, poison you and then you are on your own in regards to cancer, but it is true
Please take heart than we are now on our own and not one of us is on our own because you are here.
Cheers,
Charlie S
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- June 21, 2012 at 1:21 am
I totally get what you are saying, I really do, but consider this.
Suppose you had a broken leg, were in a cast for six weeks while it healed and after that your leg was good and so was your mind. What preventative measure would you do so as not to get another broken leg?
Is there a clinical trial for that? No there is not. Yes indeed there is support and protocol for appropriate follow up care and prevention, but no trial for non broken leg people who previously had one.
By extension, there is no clinical trial for Melanoma Patients with no evidence of disease. Yes, there are accepted protocols in place for followup for such people, but there is no trial that accepts human beings as test subjects for a scientific experiment who have no clinical presentation of disease.
Is that fair because melanoma has a nasty way of coming back years from initial diagnosis? No, it is not. Should that aspect be studiied? Yes it should.
Is it right now? No.
Other than Astromerrs and Physicists, conventional thinking of science is looking forward. In the case of Melanoma, I would submit that some backward interpretations might be in order so as to truly assess why some, like you, have survived.
But today, there is no such logic applied to survivors and as such, no clinical trials to measure us..
May be old hat, but it is stil cut you, burn you, poison you and then you are on your own in regards to cancer, but it is true
Please take heart than we are now on our own and not one of us is on our own because you are here.
Cheers,
Charlie S
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- June 21, 2012 at 1:21 am
I totally get what you are saying, I really do, but consider this.
Suppose you had a broken leg, were in a cast for six weeks while it healed and after that your leg was good and so was your mind. What preventative measure would you do so as not to get another broken leg?
Is there a clinical trial for that? No there is not. Yes indeed there is support and protocol for appropriate follow up care and prevention, but no trial for non broken leg people who previously had one.
By extension, there is no clinical trial for Melanoma Patients with no evidence of disease. Yes, there are accepted protocols in place for followup for such people, but there is no trial that accepts human beings as test subjects for a scientific experiment who have no clinical presentation of disease.
Is that fair because melanoma has a nasty way of coming back years from initial diagnosis? No, it is not. Should that aspect be studiied? Yes it should.
Is it right now? No.
Other than Astromerrs and Physicists, conventional thinking of science is looking forward. In the case of Melanoma, I would submit that some backward interpretations might be in order so as to truly assess why some, like you, have survived.
But today, there is no such logic applied to survivors and as such, no clinical trials to measure us..
May be old hat, but it is stil cut you, burn you, poison you and then you are on your own in regards to cancer, but it is true
Please take heart than we are now on our own and not one of us is on our own because you are here.
Cheers,
Charlie S
-
- June 21, 2012 at 9:31 pm
Charlie, even so, there are a few efforts to go even further than "cut you, burn you, poison you and then you are on your own…" The oncologist who did my IL-2 did actually use the words when I came back for course #2, "we'll poison you a little and then send you home…" I've been cut and burned too, and had multiple recurrences so I know NED does not always mean ND.
So I'm all for efforts like the one described here, http://www.cancer.gov/ncicancerbulletin/100411/page8. "Now doctors want to know if ipilimumab treatment following surgical removal of advanced melanoma tumors will help improve patient outcomes." This trial is closed, but a few others are open.
The question for me (and for my oncologist) for any of the trials I've listed is, is another treatment at this point more risky than doing nothing. Either because of the treatment itself, or because another treatment might make it harder to qualify for some unknown future clinical trial that I might want to apply for in the future.
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- June 21, 2012 at 9:31 pm
Charlie, even so, there are a few efforts to go even further than "cut you, burn you, poison you and then you are on your own…" The oncologist who did my IL-2 did actually use the words when I came back for course #2, "we'll poison you a little and then send you home…" I've been cut and burned too, and had multiple recurrences so I know NED does not always mean ND.
So I'm all for efforts like the one described here, http://www.cancer.gov/ncicancerbulletin/100411/page8. "Now doctors want to know if ipilimumab treatment following surgical removal of advanced melanoma tumors will help improve patient outcomes." This trial is closed, but a few others are open.
The question for me (and for my oncologist) for any of the trials I've listed is, is another treatment at this point more risky than doing nothing. Either because of the treatment itself, or because another treatment might make it harder to qualify for some unknown future clinical trial that I might want to apply for in the future.
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- June 22, 2012 at 2:27 am
So, you want to be treated for a disease that has no clinical evidence that it exists in your body by a clinical trial that does not exist?
Might I suggest, that what you are experiencing is more of a coping skill rather than a scientific premise. After seven recurrences over 25 years,,, there is a frame of reference for my comments.
You take your chance based upon your choice for a particular treatment with active, measureable and identifiable disease… If it works to your benifit and disease does vanish, it is a natural inclination to keep it that way..
Now, after your success, , you are wanting something that does not exist?
You have done something and it worked NOW , you want more?
Great idea, but unrealistic. Just why is it that you are not satisfied when many others cannot approach your level of success?
Melanoma comes with no warranty
You want one and think everybody else should have one.
Not.
Charlie S
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- June 22, 2012 at 2:27 am
So, you want to be treated for a disease that has no clinical evidence that it exists in your body by a clinical trial that does not exist?
Might I suggest, that what you are experiencing is more of a coping skill rather than a scientific premise. After seven recurrences over 25 years,,, there is a frame of reference for my comments.
You take your chance based upon your choice for a particular treatment with active, measureable and identifiable disease… If it works to your benifit and disease does vanish, it is a natural inclination to keep it that way..
Now, after your success, , you are wanting something that does not exist?
You have done something and it worked NOW , you want more?
Great idea, but unrealistic. Just why is it that you are not satisfied when many others cannot approach your level of success?
Melanoma comes with no warranty
You want one and think everybody else should have one.
Not.
Charlie S
-
- June 22, 2012 at 4:31 am
The useful point I take away from what you're saying, is to remember that more tx does not necessarily equal better. The kinds of downsides include:1. There is no tx out there, clinical trial or otherwise, that is not poison (mostly), cut, or burn, all of which may have small or large downsides.
2. More tx/trials, make it less likely I could qualify for some unknown, newer future clinical trial.
3. There's a theory among some radiation oncologists (as yet not validated) that immunotherapies can make radiation effect (inflammation) in the brain worse. Radiation effects have been showing on my MRIs for more than a year. And all the trials I listed are immunotherapies."You have done something and it worked…" Who are you talking to? I hope it's me, but my oncologist is not on board with that, yet. -
- June 22, 2012 at 4:31 am
The useful point I take away from what you're saying, is to remember that more tx does not necessarily equal better. The kinds of downsides include:1. There is no tx out there, clinical trial or otherwise, that is not poison (mostly), cut, or burn, all of which may have small or large downsides.
2. More tx/trials, make it less likely I could qualify for some unknown, newer future clinical trial.
3. There's a theory among some radiation oncologists (as yet not validated) that immunotherapies can make radiation effect (inflammation) in the brain worse. Radiation effects have been showing on my MRIs for more than a year. And all the trials I listed are immunotherapies."You have done something and it worked…" Who are you talking to? I hope it's me, but my oncologist is not on board with that, yet. -
- June 22, 2012 at 7:58 am
I think the thing is are the micro cells of melanoma floating around waiting for a place to happen whenever you have had surgery. The NIH said to come back in a couple months "when it returns". Given melanoma sloths off a ton of cells while it was sitting in my lymph node in my mediastinum ( it was 6.8 cent at the widest area)..I think a trial was in order to kill off the cells….melanoma is not as simple as a broken leg. Since I am in a trial using Anti PD 1 which boosts my immune system in hopes to kill off the melanoma cells I think it is important part of preventative care to prevent reoccurrence. I was told by the NIH and Moffitt that the chances of melanoma returning was 99% if I did nothing….
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- June 22, 2012 at 7:58 am
I think the thing is are the micro cells of melanoma floating around waiting for a place to happen whenever you have had surgery. The NIH said to come back in a couple months "when it returns". Given melanoma sloths off a ton of cells while it was sitting in my lymph node in my mediastinum ( it was 6.8 cent at the widest area)..I think a trial was in order to kill off the cells….melanoma is not as simple as a broken leg. Since I am in a trial using Anti PD 1 which boosts my immune system in hopes to kill off the melanoma cells I think it is important part of preventative care to prevent reoccurrence. I was told by the NIH and Moffitt that the chances of melanoma returning was 99% if I did nothing….
-
- June 22, 2012 at 7:58 am
I think the thing is are the micro cells of melanoma floating around waiting for a place to happen whenever you have had surgery. The NIH said to come back in a couple months "when it returns". Given melanoma sloths off a ton of cells while it was sitting in my lymph node in my mediastinum ( it was 6.8 cent at the widest area)..I think a trial was in order to kill off the cells….melanoma is not as simple as a broken leg. Since I am in a trial using Anti PD 1 which boosts my immune system in hopes to kill off the melanoma cells I think it is important part of preventative care to prevent reoccurrence. I was told by the NIH and Moffitt that the chances of melanoma returning was 99% if I did nothing….
-
- June 22, 2012 at 4:31 am
The useful point I take away from what you're saying, is to remember that more tx does not necessarily equal better. The kinds of downsides include:1. There is no tx out there, clinical trial or otherwise, that is not poison (mostly), cut, or burn, all of which may have small or large downsides.
2. More tx/trials, make it less likely I could qualify for some unknown, newer future clinical trial.
3. There's a theory among some radiation oncologists (as yet not validated) that immunotherapies can make radiation effect (inflammation) in the brain worse. Radiation effects have been showing on my MRIs for more than a year. And all the trials I listed are immunotherapies."You have done something and it worked…" Who are you talking to? I hope it's me, but my oncologist is not on board with that, yet. -
- June 22, 2012 at 2:27 am
So, you want to be treated for a disease that has no clinical evidence that it exists in your body by a clinical trial that does not exist?
Might I suggest, that what you are experiencing is more of a coping skill rather than a scientific premise. After seven recurrences over 25 years,,, there is a frame of reference for my comments.
You take your chance based upon your choice for a particular treatment with active, measureable and identifiable disease… If it works to your benifit and disease does vanish, it is a natural inclination to keep it that way..
Now, after your success, , you are wanting something that does not exist?
You have done something and it worked NOW , you want more?
Great idea, but unrealistic. Just why is it that you are not satisfied when many others cannot approach your level of success?
Melanoma comes with no warranty
You want one and think everybody else should have one.
Not.
Charlie S
-
- June 21, 2012 at 9:31 pm
Charlie, even so, there are a few efforts to go even further than "cut you, burn you, poison you and then you are on your own…" The oncologist who did my IL-2 did actually use the words when I came back for course #2, "we'll poison you a little and then send you home…" I've been cut and burned too, and had multiple recurrences so I know NED does not always mean ND.
So I'm all for efforts like the one described here, http://www.cancer.gov/ncicancerbulletin/100411/page8. "Now doctors want to know if ipilimumab treatment following surgical removal of advanced melanoma tumors will help improve patient outcomes." This trial is closed, but a few others are open.
The question for me (and for my oncologist) for any of the trials I've listed is, is another treatment at this point more risky than doing nothing. Either because of the treatment itself, or because another treatment might make it harder to qualify for some unknown future clinical trial that I might want to apply for in the future.
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