› Forums › General Melanoma Community › 2 year anniversary; substantial responder GSK BRAf/MEK inhibitors trial
- This topic has 33 replies, 7 voices, and was last updated 11 years, 4 months ago by
john partrick michael murphy.
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- December 28, 2012 at 5:23 pm
What a great day. This is my second anniversary on these two life prolonging (saving?) drugs. No evidence of any tumors but one, and it is a little shrimp compared to when I started. Thank you GSK. Thank you MGH. Thank you doctors Chabner, Flaherty, and Lawrence. Thank you Phase 1 participants on BRAf alone, opening this door of life for us. Thank you FDA for allowing this trial using both drugs, for you also played a great part. Most of all I wish to thank my terrific brother, Dr. Martin J.What a great day. This is my second anniversary on these two life prolonging (saving?) drugs. No evidence of any tumors but one, and it is a little shrimp compared to when I started. Thank you GSK. Thank you MGH. Thank you doctors Chabner, Flaherty, and Lawrence. Thank you Phase 1 participants on BRAf alone, opening this door of life for us. Thank you FDA for allowing this trial using both drugs, for you also played a great part. Most of all I wish to thank my terrific brother, Dr. Martin J. Murphy, who knew about all this, and gave me the courage to have hope, and sent me off to Boston to get it.
John Patrick Michael Murphy
Colorado Springs, CO
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- December 28, 2012 at 10:50 pm
Great news! I've "only" been on these drugs since May 2011, but my experience mirrors yours. Have you heard anything about FDA approval?
Best wishes,
Harry
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- December 29, 2012 at 4:14 pm
Harry our doctors tell us “the data is almost mature, but not yet.” Indeed, GSK has bundled a truckload of documentation for the FDA, in anticipation of the hearing when it gets scheduled. I am grateful to the FDA, but why are they part of the Dept. of Agricultural, and mixed in with Rural Concerns, instead of having their own department? Our drugs did not come from the earth. They are molecules that never existed before…the products of the genius of men, going from their brains to a petri dish. We are so proud to play our part. Lots of hope out there, but there would be more if we could question the entrenched dogmas of the past. -
- December 29, 2012 at 4:14 pm
Harry our doctors tell us “the data is almost mature, but not yet.” Indeed, GSK has bundled a truckload of documentation for the FDA, in anticipation of the hearing when it gets scheduled. I am grateful to the FDA, but why are they part of the Dept. of Agricultural, and mixed in with Rural Concerns, instead of having their own department? Our drugs did not come from the earth. They are molecules that never existed before…the products of the genius of men, going from their brains to a petri dish. We are so proud to play our part. Lots of hope out there, but there would be more if we could question the entrenched dogmas of the past. -
- December 29, 2012 at 4:14 pm
Harry our doctors tell us “the data is almost mature, but not yet.” Indeed, GSK has bundled a truckload of documentation for the FDA, in anticipation of the hearing when it gets scheduled. I am grateful to the FDA, but why are they part of the Dept. of Agricultural, and mixed in with Rural Concerns, instead of having their own department? Our drugs did not come from the earth. They are molecules that never existed before…the products of the genius of men, going from their brains to a petri dish. We are so proud to play our part. Lots of hope out there, but there would be more if we could question the entrenched dogmas of the past. -
- December 29, 2012 at 4:15 pm
Harry our doctors tell us “the data is almost mature, but not yet.” Indeed, GSK has bundled a truckload of documentation for the FDA, in anticipation of the hearing when it gets scheduled. I am grateful to the FDA, but why are they part of the Dept. of Agricultural, and mixed in with Rural Concerns, instead of having their own department? Our drugs did not come from the earth. They are molecules that never existed before…the products of the genius of men, going from their brains to a petri dish. We are so proud to play our part. Lots of hope out there, but there would be more if we could question the entrenched dogmas of the past. -
- December 29, 2012 at 4:15 pm
Harry our doctors tell us “the data is almost mature, but not yet.” Indeed, GSK has bundled a truckload of documentation for the FDA, in anticipation of the hearing when it gets scheduled. I am grateful to the FDA, but why are they part of the Dept. of Agricultural, and mixed in with Rural Concerns, instead of having their own department? Our drugs did not come from the earth. They are molecules that never existed before…the products of the genius of men, going from their brains to a petri dish. We are so proud to play our part. Lots of hope out there, but there would be more if we could question the entrenched dogmas of the past. -
- December 29, 2012 at 4:15 pm
Harry our doctors tell us “the data is almost mature, but not yet.” Indeed, GSK has bundled a truckload of documentation for the FDA, in anticipation of the hearing when it gets scheduled. I am grateful to the FDA, but why are they part of the Dept. of Agricultural, and mixed in with Rural Concerns, instead of having their own department? Our drugs did not come from the earth. They are molecules that never existed before…the products of the genius of men, going from their brains to a petri dish. We are so proud to play our part. Lots of hope out there, but there would be more if we could question the entrenched dogmas of the past.
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- December 28, 2012 at 10:50 pm
Great news! I've "only" been on these drugs since May 2011, but my experience mirrors yours. Have you heard anything about FDA approval?
Best wishes,
Harry
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- December 28, 2012 at 10:50 pm
Great news! I've "only" been on these drugs since May 2011, but my experience mirrors yours. Have you heard anything about FDA approval?
Best wishes,
Harry
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- December 29, 2012 at 4:50 am
It's been awhile, good to hear from you! Congratulations and wishing you a life time of NED status! Thank you for posting, especially stage IV…..gives so much hope to all of us who are stage IV and must totally bring confidence to all those who are not…..we will beat this! God bless you John Patrick Michael Murphy…….love that name!
Swanee
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- December 29, 2012 at 4:50 am
It's been awhile, good to hear from you! Congratulations and wishing you a life time of NED status! Thank you for posting, especially stage IV…..gives so much hope to all of us who are stage IV and must totally bring confidence to all those who are not…..we will beat this! God bless you John Patrick Michael Murphy…….love that name!
Swanee
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- December 29, 2012 at 4:21 pm
Thanks Swanee, I was named for my three uncles. John and Patrick never left Ireland! I knew uncle Mike though and loved him. Dad was the only child born in the USA. I hope you continue to do well…what battles you have behind you! Thanks for your inspiration and research. -
- December 29, 2012 at 4:21 pm
Thanks Swanee, I was named for my three uncles. John and Patrick never left Ireland! I knew uncle Mike though and loved him. Dad was the only child born in the USA. I hope you continue to do well…what battles you have behind you! Thanks for your inspiration and research. -
- December 29, 2012 at 4:21 pm
Thanks Swanee, I was named for my three uncles. John and Patrick never left Ireland! I knew uncle Mike though and loved him. Dad was the only child born in the USA. I hope you continue to do well…what battles you have behind you! Thanks for your inspiration and research.
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- December 29, 2012 at 4:50 am
It's been awhile, good to hear from you! Congratulations and wishing you a life time of NED status! Thank you for posting, especially stage IV…..gives so much hope to all of us who are stage IV and must totally bring confidence to all those who are not…..we will beat this! God bless you John Patrick Michael Murphy…….love that name!
Swanee
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- December 29, 2012 at 8:07 pm
Dear J.P.M.M.!
Fantastic news. My best friend is on these drugs. She is struggling to come to terms with her diagnosis and she was given six months to live (with drugs). She doesn't come on this site as she is afraid of any negative news. We are all working on helping her remain positive. I am on this site everyday as I believe it's the best place to find information, supportive(actually brilliantly caring people) and news like this. I, too thank research and scientists for making the breakthrough, but I also thank people like you who give others hope and positivity.
Many, many best wishes,
Vic.
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- December 29, 2012 at 8:07 pm
Dear J.P.M.M.!
Fantastic news. My best friend is on these drugs. She is struggling to come to terms with her diagnosis and she was given six months to live (with drugs). She doesn't come on this site as she is afraid of any negative news. We are all working on helping her remain positive. I am on this site everyday as I believe it's the best place to find information, supportive(actually brilliantly caring people) and news like this. I, too thank research and scientists for making the breakthrough, but I also thank people like you who give others hope and positivity.
Many, many best wishes,
Vic.
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- December 29, 2012 at 11:22 pm
Vic, I know where she is…in the lonesome valley, not feeling lonely, but rather forsaken. That’s all well and good, but if you stay there you become a cancer victim, and her soothsayer may be right about the six months.Now, if she would like to get on with life, and become a cancer warrior, she has to ratchet up her courage, and gather an arsenal about her. She should be prepared for knife fights with it, and radiation, and chemical warfare is just fine, and human trials, but it all starts with her.
No matter how well our drugs work they need our auto-immune to keep working, and when she screams “NO!” at her cancer, it tunes up our immune just right. The instant she has hope, her strength will come back. If she will concentrate on how well she is today, and be grateful for her tumor fighting medications, and friends like you, she can write her soothsayer each anniversary, and tell him, “To the mind of the fool, all things have been revealed, as I remain part of the un-dead.”
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- December 29, 2012 at 11:22 pm
Vic, I know where she is…in the lonesome valley, not feeling lonely, but rather forsaken. That’s all well and good, but if you stay there you become a cancer victim, and her soothsayer may be right about the six months.Now, if she would like to get on with life, and become a cancer warrior, she has to ratchet up her courage, and gather an arsenal about her. She should be prepared for knife fights with it, and radiation, and chemical warfare is just fine, and human trials, but it all starts with her.
No matter how well our drugs work they need our auto-immune to keep working, and when she screams “NO!” at her cancer, it tunes up our immune just right. The instant she has hope, her strength will come back. If she will concentrate on how well she is today, and be grateful for her tumor fighting medications, and friends like you, she can write her soothsayer each anniversary, and tell him, “To the mind of the fool, all things have been revealed, as I remain part of the un-dead.”
-
- December 29, 2012 at 11:22 pm
Vic, I know where she is…in the lonesome valley, not feeling lonely, but rather forsaken. That’s all well and good, but if you stay there you become a cancer victim, and her soothsayer may be right about the six months.Now, if she would like to get on with life, and become a cancer warrior, she has to ratchet up her courage, and gather an arsenal about her. She should be prepared for knife fights with it, and radiation, and chemical warfare is just fine, and human trials, but it all starts with her.
No matter how well our drugs work they need our auto-immune to keep working, and when she screams “NO!” at her cancer, it tunes up our immune just right. The instant she has hope, her strength will come back. If she will concentrate on how well she is today, and be grateful for her tumor fighting medications, and friends like you, she can write her soothsayer each anniversary, and tell him, “To the mind of the fool, all things have been revealed, as I remain part of the un-dead.”
-
- December 29, 2012 at 8:07 pm
Dear J.P.M.M.!
Fantastic news. My best friend is on these drugs. She is struggling to come to terms with her diagnosis and she was given six months to live (with drugs). She doesn't come on this site as she is afraid of any negative news. We are all working on helping her remain positive. I am on this site everyday as I believe it's the best place to find information, supportive(actually brilliantly caring people) and news like this. I, too thank research and scientists for making the breakthrough, but I also thank people like you who give others hope and positivity.
Many, many best wishes,
Vic.
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- December 30, 2012 at 6:13 pm
Hi John Patrick Michael,
Congrats on making it to 2 years.
I have seen on posts that Doctors have stopped GSK BRAF/MEK on patients that have been stable or NED for a extended period of time because the doctor is concerned that the drugs might stop working then the patient will progress.
Question: Have any of your doctor discussed stopping the BRAF/MEK drug for you??? How long to you plan on staying on these drugs??? Do you have any side effects?
Continued Good Luck!
MaryBeth
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- December 30, 2012 at 6:13 pm
Hi John Patrick Michael,
Congrats on making it to 2 years.
I have seen on posts that Doctors have stopped GSK BRAF/MEK on patients that have been stable or NED for a extended period of time because the doctor is concerned that the drugs might stop working then the patient will progress.
Question: Have any of your doctor discussed stopping the BRAF/MEK drug for you??? How long to you plan on staying on these drugs??? Do you have any side effects?
Continued Good Luck!
MaryBeth
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- December 31, 2012 at 12:46 pm
MaryBeth, I don’t know about my doctors but I won’t change anything. I showed up at MGH near death, and I have felt good for these two years, in their care. Very few side affects for over 700 days of treatment. I guess I would have missed about 9 days work in 2 years due to the side affects, if I still worked.
If other doctors take their successful patients off these life saving drugs, that is their business, and I have no right to poach in their grove, or try to second guess them. Good fortune to them and their patients I say.
However, I know of no such plan in my particular study, but I think I would have heard of it, if it were part of the protocol. I would sooner part with a finger or two, and all my toes, than give up my “four red caps and the white pill” each day. It has become a secular sacrament to me personally.
I don’t want to change anything…every 28 days we fly from DIA to Logan on jetBlue, stay at the same hotel, see the same staff, and get the same great news. I’m like a Prius that only has one spot to get plugged in, and it is The General, our Nation’s Hospital, in Boston.
Won’t take an aspirin in the Rockies without checking in with my team on the Boston side of the Longfellow Bridge. -
- December 31, 2012 at 12:46 pm
MaryBeth, I don’t know about my doctors but I won’t change anything. I showed up at MGH near death, and I have felt good for these two years, in their care. Very few side affects for over 700 days of treatment. I guess I would have missed about 9 days work in 2 years due to the side affects, if I still worked.
If other doctors take their successful patients off these life saving drugs, that is their business, and I have no right to poach in their grove, or try to second guess them. Good fortune to them and their patients I say.
However, I know of no such plan in my particular study, but I think I would have heard of it, if it were part of the protocol. I would sooner part with a finger or two, and all my toes, than give up my “four red caps and the white pill” each day. It has become a secular sacrament to me personally.
I don’t want to change anything…every 28 days we fly from DIA to Logan on jetBlue, stay at the same hotel, see the same staff, and get the same great news. I’m like a Prius that only has one spot to get plugged in, and it is The General, our Nation’s Hospital, in Boston.
Won’t take an aspirin in the Rockies without checking in with my team on the Boston side of the Longfellow Bridge. -
- December 31, 2012 at 12:46 pm
MaryBeth, I don’t know about my doctors but I won’t change anything. I showed up at MGH near death, and I have felt good for these two years, in their care. Very few side affects for over 700 days of treatment. I guess I would have missed about 9 days work in 2 years due to the side affects, if I still worked.
If other doctors take their successful patients off these life saving drugs, that is their business, and I have no right to poach in their grove, or try to second guess them. Good fortune to them and their patients I say.
However, I know of no such plan in my particular study, but I think I would have heard of it, if it were part of the protocol. I would sooner part with a finger or two, and all my toes, than give up my “four red caps and the white pill” each day. It has become a secular sacrament to me personally.
I don’t want to change anything…every 28 days we fly from DIA to Logan on jetBlue, stay at the same hotel, see the same staff, and get the same great news. I’m like a Prius that only has one spot to get plugged in, and it is The General, our Nation’s Hospital, in Boston.
Won’t take an aspirin in the Rockies without checking in with my team on the Boston side of the Longfellow Bridge.
-
- December 30, 2012 at 6:13 pm
Hi John Patrick Michael,
Congrats on making it to 2 years.
I have seen on posts that Doctors have stopped GSK BRAF/MEK on patients that have been stable or NED for a extended period of time because the doctor is concerned that the drugs might stop working then the patient will progress.
Question: Have any of your doctor discussed stopping the BRAF/MEK drug for you??? How long to you plan on staying on these drugs??? Do you have any side effects?
Continued Good Luck!
MaryBeth
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