› Forums › General Melanoma Community › Stage IV Brain, Pelvis, Adrenal, Lungs, Along Spine — Where is “best” melanoma specialist, and treatment alternatives
- This topic has 15 replies, 5 voices, and was last updated 13 years ago by
Janet Lee.
- Post
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- January 26, 2013 at 8:08 pm
You all know how devastated we feel right now. My beautiful, loving 63-year old husband has Stage IV Melanoma with a tumor in his brain, several in pelvic area, one on adrenal gland, several along spine, and some small lung nodules. My God, how could this be? He's always been so strong and so healthy!
You all know how devastated we feel right now. My beautiful, loving 63-year old husband has Stage IV Melanoma with a tumor in his brain, several in pelvic area, one on adrenal gland, several along spine, and some small lung nodules. My God, how could this be? He's always been so strong and so healthy!
We've been to Dana Farber and met with a melanoma specialist. But is she the best? Does she know everything that will help my husband? Should I go somewhere else for another opinion? Anyone know anything about the Sylvester cancer center affiliated with University of Miami for melanoma treatments?
Radiation started Friday to pelvic area (he's in a lot of pain). Cyberknife will be performed on brain lesion maybe this coming week. Dana Farber neuro-oncologists agreed with this approach. Dana Farber melanoma doctor is suggesting Yervoy in a week (if he has the right "markers?")??
What else do we need to know? So much to learn, so much to think about. All I know if that I want more years with this wonderful man! Please help!
Thankyou.
Janet
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- January 27, 2013 at 3:07 am
I think Mass General in Boston has some of the top specialists doesn’t it? You could go there for a 2nd. The board is often slow on the weekend, but it sounds like you are already in good hands at DF with a good plan You just have to find a mel doc and a plan you trust and move forward. Sounds like radiation/cyber knife is a good start – get that pain and brain taken care of. I’m not aware of markers being tested for Yervoy, but if his tumor tests positive for the BRAF v600 mutation, he would be eligible to take Zelboraf. Maybe they meant Zelboraf?Anyone can take Yervoy but they dont know who it will work for, or why, and
when it works its slower acting than Zelboraf. Yervoy can have long lasting responses where a patient is stable or becomes NED. Still lots of debate in the community about which of these drugs to try first and why.You are doing a great job Janet. I wish I could give you an answer to guarantee more health and more years, we all want that, but it just doesn’t exist. What works for one person often doesn’t work for the next. Yet some people have one surgery and it never comes back. There is so much left to learn.
Best of luck & hope this helps a little.
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- January 27, 2013 at 3:07 am
I think Mass General in Boston has some of the top specialists doesn’t it? You could go there for a 2nd. The board is often slow on the weekend, but it sounds like you are already in good hands at DF with a good plan You just have to find a mel doc and a plan you trust and move forward. Sounds like radiation/cyber knife is a good start – get that pain and brain taken care of. I’m not aware of markers being tested for Yervoy, but if his tumor tests positive for the BRAF v600 mutation, he would be eligible to take Zelboraf. Maybe they meant Zelboraf?Anyone can take Yervoy but they dont know who it will work for, or why, and
when it works its slower acting than Zelboraf. Yervoy can have long lasting responses where a patient is stable or becomes NED. Still lots of debate in the community about which of these drugs to try first and why.You are doing a great job Janet. I wish I could give you an answer to guarantee more health and more years, we all want that, but it just doesn’t exist. What works for one person often doesn’t work for the next. Yet some people have one surgery and it never comes back. There is so much left to learn.
Best of luck & hope this helps a little.
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- January 27, 2013 at 3:07 am
I think Mass General in Boston has some of the top specialists doesn’t it? You could go there for a 2nd. The board is often slow on the weekend, but it sounds like you are already in good hands at DF with a good plan You just have to find a mel doc and a plan you trust and move forward. Sounds like radiation/cyber knife is a good start – get that pain and brain taken care of. I’m not aware of markers being tested for Yervoy, but if his tumor tests positive for the BRAF v600 mutation, he would be eligible to take Zelboraf. Maybe they meant Zelboraf?Anyone can take Yervoy but they dont know who it will work for, or why, and
when it works its slower acting than Zelboraf. Yervoy can have long lasting responses where a patient is stable or becomes NED. Still lots of debate in the community about which of these drugs to try first and why.You are doing a great job Janet. I wish I could give you an answer to guarantee more health and more years, we all want that, but it just doesn’t exist. What works for one person often doesn’t work for the next. Yet some people have one surgery and it never comes back. There is so much left to learn.
Best of luck & hope this helps a little.
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- January 27, 2013 at 3:03 pm
Janet,
I so sorry to hear that your husband is facing this and that you are as well. I've been a Stage IV melanoma patient/survivor since 2005. I'm very partial to Dana Farber (DFCI)
I go to DFCI. I've been NED since ~2009. Your Doctor/Mel Specialist is part of Melanoma team that includes Dr. F. Stephen Hodi and a host of specialists through Brigham and Women's if needed. A team that I've trusted to help me fight (and fight hard!) mel when needed to over the years. A team that listened to me when I advocated/pushed at times – which all patients need to do no matter where they end up for treatment.
I consulted with other major cancer hospitals (MD Anderson, Sloan Kettering, etc) before starting my path with DFCI. I chose them since they had access to cutting edge trials (I was on 2), lab facilities, top docs and the entire hospital is geared toward cancer. They get it – they know what is at stake. As I said, I'm partial -but they worked hard to save my life. I'm still here.
I wish your husband well on the treatments and decisions to come – I know this isn't easy for eithr of you.
Hang in there!
Rocco in NH, stage IV since 2005, IPI (MDX-010 trial) responder, NED
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- January 27, 2013 at 3:03 pm
Janet,
I so sorry to hear that your husband is facing this and that you are as well. I've been a Stage IV melanoma patient/survivor since 2005. I'm very partial to Dana Farber (DFCI)
I go to DFCI. I've been NED since ~2009. Your Doctor/Mel Specialist is part of Melanoma team that includes Dr. F. Stephen Hodi and a host of specialists through Brigham and Women's if needed. A team that I've trusted to help me fight (and fight hard!) mel when needed to over the years. A team that listened to me when I advocated/pushed at times – which all patients need to do no matter where they end up for treatment.
I consulted with other major cancer hospitals (MD Anderson, Sloan Kettering, etc) before starting my path with DFCI. I chose them since they had access to cutting edge trials (I was on 2), lab facilities, top docs and the entire hospital is geared toward cancer. They get it – they know what is at stake. As I said, I'm partial -but they worked hard to save my life. I'm still here.
I wish your husband well on the treatments and decisions to come – I know this isn't easy for eithr of you.
Hang in there!
Rocco in NH, stage IV since 2005, IPI (MDX-010 trial) responder, NED
.
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- January 27, 2013 at 3:03 pm
Janet,
I so sorry to hear that your husband is facing this and that you are as well. I've been a Stage IV melanoma patient/survivor since 2005. I'm very partial to Dana Farber (DFCI)
I go to DFCI. I've been NED since ~2009. Your Doctor/Mel Specialist is part of Melanoma team that includes Dr. F. Stephen Hodi and a host of specialists through Brigham and Women's if needed. A team that I've trusted to help me fight (and fight hard!) mel when needed to over the years. A team that listened to me when I advocated/pushed at times – which all patients need to do no matter where they end up for treatment.
I consulted with other major cancer hospitals (MD Anderson, Sloan Kettering, etc) before starting my path with DFCI. I chose them since they had access to cutting edge trials (I was on 2), lab facilities, top docs and the entire hospital is geared toward cancer. They get it – they know what is at stake. As I said, I'm partial -but they worked hard to save my life. I'm still here.
I wish your husband well on the treatments and decisions to come – I know this isn't easy for eithr of you.
Hang in there!
Rocco in NH, stage IV since 2005, IPI (MDX-010 trial) responder, NED
.
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- January 27, 2013 at 5:43 pm
Janet, might check out the Melanoma International Foundation web site http://www.melanomainternational.org/
They have a lot of useful information and I particularly recommend you check out their "Webinars", especially the ones on ipilumimab (ipi, Yervoy) and on brain radiation. All of these webinars provide up-to-date information presented by nationally recognized melanoma specialists. They will give you an excellent orientation to melanoma and its various possible treatments (most of which are still in clinical trials).
Melanoma and its treatment is a very complex topic and every case is different. Unfortunately, none of us can all we want to know instantly. It takes time. Medically, your husband seems to be in good hands right now so try to take a deep breath, try to let go of your feeling of panic and replace it with PMA (positive mental attitude), and begin to gradually learn what you want or need to know about melanoma. I know this is a lot to ask of you, but it is the path we all must take eventually.
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- January 27, 2013 at 5:43 pm
Janet, might check out the Melanoma International Foundation web site http://www.melanomainternational.org/
They have a lot of useful information and I particularly recommend you check out their "Webinars", especially the ones on ipilumimab (ipi, Yervoy) and on brain radiation. All of these webinars provide up-to-date information presented by nationally recognized melanoma specialists. They will give you an excellent orientation to melanoma and its various possible treatments (most of which are still in clinical trials).
Melanoma and its treatment is a very complex topic and every case is different. Unfortunately, none of us can all we want to know instantly. It takes time. Medically, your husband seems to be in good hands right now so try to take a deep breath, try to let go of your feeling of panic and replace it with PMA (positive mental attitude), and begin to gradually learn what you want or need to know about melanoma. I know this is a lot to ask of you, but it is the path we all must take eventually.
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- January 29, 2013 at 12:57 am
Hi Janet,
I just want to add my support.
It must have been BRAF to which you were referring. As was mentioned, there’s no criteria for Yervoy except staging.
If your husband is BRAF+, the drug treatment can work remarkably fast–within days.
Please keep us posted.
Karen -
- January 29, 2013 at 12:57 am
Hi Janet,
I just want to add my support.
It must have been BRAF to which you were referring. As was mentioned, there’s no criteria for Yervoy except staging.
If your husband is BRAF+, the drug treatment can work remarkably fast–within days.
Please keep us posted.
Karen -
- January 29, 2013 at 12:57 am
Hi Janet,
I just want to add my support.
It must have been BRAF to which you were referring. As was mentioned, there’s no criteria for Yervoy except staging.
If your husband is BRAF+, the drug treatment can work remarkably fast–within days.
Please keep us posted.
Karen
-
- January 27, 2013 at 5:43 pm
Janet, might check out the Melanoma International Foundation web site http://www.melanomainternational.org/
They have a lot of useful information and I particularly recommend you check out their "Webinars", especially the ones on ipilumimab (ipi, Yervoy) and on brain radiation. All of these webinars provide up-to-date information presented by nationally recognized melanoma specialists. They will give you an excellent orientation to melanoma and its various possible treatments (most of which are still in clinical trials).
Melanoma and its treatment is a very complex topic and every case is different. Unfortunately, none of us can all we want to know instantly. It takes time. Medically, your husband seems to be in good hands right now so try to take a deep breath, try to let go of your feeling of panic and replace it with PMA (positive mental attitude), and begin to gradually learn what you want or need to know about melanoma. I know this is a lot to ask of you, but it is the path we all must take eventually.
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- February 3, 2013 at 10:18 pm
I have not been on this site for several days; I thank you all for your responses and help. You've been so helpful and right on in your suggestions. I have let go of the panic and will help Don attack this disease with every inch of me.
I had my drugs mixed up. We've been back to Dana Farber, and he does have the B-RAF mutation. We will finish radiation in 10 days, and then back to Dana Farber to start Zelboraf. The oncologist says the Zelboraf works faster, and hopes to keep Don on it until it stops working. If it does stop working, she says we will go to Yervoy/Ipi. This sounds like a good plan, according to all the information you guys have replied with.
I'm wondering if any of you would share your experience with Zelboraf. We would like to fly south to our condo in SE Florida once Don starts on Zelboraf; we've posed the question to the oncologist's PA (unfortunately we didn't see the onc on our last visit).
Another drug the onc is suggesting is Zometa for Don's bones (his pelvis has been compromised by tumors). There's a scary side effect of narcosis of the jaw which is unstoppable if it happens. Don has hereditary bone loss which has caused him to lose most of his teeth at an early age.
If you see this post again, please bear with me, as I'm trying to figure out how best to use this website. I'm still not sure if I should be replying to my original post (which I am now) or starting a new thread.
Thanks again everyone. And a particular thanks for the website with webinars — going to go learn somthing!
Janet
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- February 3, 2013 at 10:18 pm
I have not been on this site for several days; I thank you all for your responses and help. You've been so helpful and right on in your suggestions. I have let go of the panic and will help Don attack this disease with every inch of me.
I had my drugs mixed up. We've been back to Dana Farber, and he does have the B-RAF mutation. We will finish radiation in 10 days, and then back to Dana Farber to start Zelboraf. The oncologist says the Zelboraf works faster, and hopes to keep Don on it until it stops working. If it does stop working, she says we will go to Yervoy/Ipi. This sounds like a good plan, according to all the information you guys have replied with.
I'm wondering if any of you would share your experience with Zelboraf. We would like to fly south to our condo in SE Florida once Don starts on Zelboraf; we've posed the question to the oncologist's PA (unfortunately we didn't see the onc on our last visit).
Another drug the onc is suggesting is Zometa for Don's bones (his pelvis has been compromised by tumors). There's a scary side effect of narcosis of the jaw which is unstoppable if it happens. Don has hereditary bone loss which has caused him to lose most of his teeth at an early age.
If you see this post again, please bear with me, as I'm trying to figure out how best to use this website. I'm still not sure if I should be replying to my original post (which I am now) or starting a new thread.
Thanks again everyone. And a particular thanks for the website with webinars — going to go learn somthing!
Janet
-
- February 3, 2013 at 10:18 pm
I have not been on this site for several days; I thank you all for your responses and help. You've been so helpful and right on in your suggestions. I have let go of the panic and will help Don attack this disease with every inch of me.
I had my drugs mixed up. We've been back to Dana Farber, and he does have the B-RAF mutation. We will finish radiation in 10 days, and then back to Dana Farber to start Zelboraf. The oncologist says the Zelboraf works faster, and hopes to keep Don on it until it stops working. If it does stop working, she says we will go to Yervoy/Ipi. This sounds like a good plan, according to all the information you guys have replied with.
I'm wondering if any of you would share your experience with Zelboraf. We would like to fly south to our condo in SE Florida once Don starts on Zelboraf; we've posed the question to the oncologist's PA (unfortunately we didn't see the onc on our last visit).
Another drug the onc is suggesting is Zometa for Don's bones (his pelvis has been compromised by tumors). There's a scary side effect of narcosis of the jaw which is unstoppable if it happens. Don has hereditary bone loss which has caused him to lose most of his teeth at an early age.
If you see this post again, please bear with me, as I'm trying to figure out how best to use this website. I'm still not sure if I should be replying to my original post (which I am now) or starting a new thread.
Thanks again everyone. And a particular thanks for the website with webinars — going to go learn somthing!
Janet
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