› Forums › General Melanoma Community › My dad diagnosed stage 4 Melanoma with metastasizes to the brain and lungs
- This topic has 12 replies, 4 voices, and was last updated 9 years, 2 months ago by
nursemeliss.
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- January 26, 2015 at 3:57 am
About 2008 my dad was diagnosed with Melanoma on his head and forehead. The doctor removed it and on both samples it showed clear margins. fast forward to December 4th 2014 my dad was playing poker which is a pretty routine thing since he retired. A lot of the people know him there and noticed that he was acting strange so they called for an ambulance. Thinking he may of had a stroke they did a CT and later an MRI, they found a total of 18 tumors in his brain. The largest ones are not operable because they are so close to the brain stem. They scanned his chest and abdomen and found a large tumor there 4cm x 5cm. It is likely that he has lymph node involvement also. They did a biopsy of the tumor in the lung and that came back BRAF Negative. Not sure really what that means. He has been on steroids for brain swelling, anti seizure meds, and ativan so he can sleep because those steroids were only allowing him to sleep for 3-4 hours. He has had about 10 whole brain radiations done, now we are going to start on immunology and I beleive Yervoy. Metting with the MD on Wednesday. What questions should I ask? I am a regisitered nurse, but my specialty has never been oncology, so I am lost. I am devestated and not ready to lose my dad, I love him so much. Any help is greatly appreciated!!!
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- January 26, 2015 at 8:38 am
I just wanted to reply so you know you are not alone. I am going through something very similar with my grandfather. He also had melanoma removed from his forehead but also on his back. That was 12 years ago! Fast forward to a week before xmas he was feeling very dizzy and had a headache in the back of his lower head. I also work in a hospital but in radiology. So I got him in for an MRI on xmas eve only to find a large tumor in his cerebellum. He was also on sterroids and ativan for sleep. But about a week ago after meeting with an oncologist who specialized in Melanoma he went in the same day as our oncology appointment to check in for brain surgery! This was very very scary with the added stress that he is 83. Thank god it all went well and the tumor was removed. Tomorrow he starts his 5 days of radiation to the site of where the tumor was. They said that if he has radiation where the tumor was it drops the chances of it coming back to 10%. But they also found multiple lung nodules on a CT when found out about the brain tumor. So this week he also starts Yervoy and Temodar. After reading up on Yervoy I am very nervous. There are some pretty bad side effects. But I also know that the outcome could be very rewarding. Is your father seeing an oncologist that specialized in Melanoma? One thing I have learned from this site is that is very important. I did some major research to find a well known one here in LA. If you find out any further information on Yervoy pleas let us know. Good luck!!
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- January 26, 2015 at 8:38 am
I just wanted to reply so you know you are not alone. I am going through something very similar with my grandfather. He also had melanoma removed from his forehead but also on his back. That was 12 years ago! Fast forward to a week before xmas he was feeling very dizzy and had a headache in the back of his lower head. I also work in a hospital but in radiology. So I got him in for an MRI on xmas eve only to find a large tumor in his cerebellum. He was also on sterroids and ativan for sleep. But about a week ago after meeting with an oncologist who specialized in Melanoma he went in the same day as our oncology appointment to check in for brain surgery! This was very very scary with the added stress that he is 83. Thank god it all went well and the tumor was removed. Tomorrow he starts his 5 days of radiation to the site of where the tumor was. They said that if he has radiation where the tumor was it drops the chances of it coming back to 10%. But they also found multiple lung nodules on a CT when found out about the brain tumor. So this week he also starts Yervoy and Temodar. After reading up on Yervoy I am very nervous. There are some pretty bad side effects. But I also know that the outcome could be very rewarding. Is your father seeing an oncologist that specialized in Melanoma? One thing I have learned from this site is that is very important. I did some major research to find a well known one here in LA. If you find out any further information on Yervoy pleas let us know. Good luck!!
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- January 26, 2015 at 8:38 am
I just wanted to reply so you know you are not alone. I am going through something very similar with my grandfather. He also had melanoma removed from his forehead but also on his back. That was 12 years ago! Fast forward to a week before xmas he was feeling very dizzy and had a headache in the back of his lower head. I also work in a hospital but in radiology. So I got him in for an MRI on xmas eve only to find a large tumor in his cerebellum. He was also on sterroids and ativan for sleep. But about a week ago after meeting with an oncologist who specialized in Melanoma he went in the same day as our oncology appointment to check in for brain surgery! This was very very scary with the added stress that he is 83. Thank god it all went well and the tumor was removed. Tomorrow he starts his 5 days of radiation to the site of where the tumor was. They said that if he has radiation where the tumor was it drops the chances of it coming back to 10%. But they also found multiple lung nodules on a CT when found out about the brain tumor. So this week he also starts Yervoy and Temodar. After reading up on Yervoy I am very nervous. There are some pretty bad side effects. But I also know that the outcome could be very rewarding. Is your father seeing an oncologist that specialized in Melanoma? One thing I have learned from this site is that is very important. I did some major research to find a well known one here in LA. If you find out any further information on Yervoy pleas let us know. Good luck!!
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- January 26, 2015 at 4:05 pm
Braf negative means he cannot have the medicines that target the B-RAF gene mutation. Thus those treatment options are not available to him. However after awhile tumors can mutate and express enough of the braf gene so he could be retested and test positive. But that is usually many months at least down the road.
The rest of the FDA approved treatment path that seems to becoming more standard is Yervoy is next. Depending on how he does with this treatment and how affective it is the doc would probably go with one of the recently approved pd1 medicines. Either keytruda which is ever 3 weeks or opdivo which is every 2 weeks.
There are some older fda approved med as well.
The other route is a clinical trial but you have to go where the trial is.
Like was said making sure your doc is a melanoma specialist is important. Although it sounds like your doc is following the latest standard.
Going to one of the big centers for treatment could be very important. Like msk in ny, mofffitt in Tampa, mda in Houston and so forth.
Artie
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- March 14, 2015 at 2:41 am
First thank you for all the responses, I read them several weeks ago, but could not bring myself to reply at the time because it was just too painful at the time. My dad had 15 whole brain radiation treatments to start with he tolerated it quite well except for having a poor appetite due to food tasting different to him and getting less sleep due to the steroids. No complaints of pain/nausea/vomiting. He ended up having a seizure and went back into the hospital, this time they did do neurosurgery, I was told they removed 14 out of 18 tumors. The other 4 are too close to the brain stem to mess with. They also started him on Yervoy, so far no reactions or adverse effects. He has gotten 2/4 treatments. The doctors have tried 3 times unsuccessfully to wean him off the steroids, and every time he is unsteady, falls, and has confusion. My dad is 64 years old and he has deteriorated over the past 2 months losing 45 lbs, having difficulty doing the things he once loved and was good at. I am trying to be strong for him and not cry in front of him. Seeing this once strong healthy brilliant man become him frail is probably the most painful thing for me. I guess I want to know how hopeful to be, I have seen miracles in peoples stories here and sad ones. I have wanted to ask the doctor what his life expectancy is, but every time I'm at the appointment with him, I cannot bring myself to ask because I am afraid to hear the answer. Is there people out there that have had BRAF- Melanoma with Metz to the brain and lung that have survived and are living the life the want to? My dad has made it clear to me that if he "can't wipe his own ass, you had better pull the plug" (his words not mine). I want to follow his wishes and be realistic with how much quality time we will be able to spend together. Please respond if you can relate, or can fill me in on what I can expect down the road. Thank you!
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- March 14, 2015 at 2:41 am
First thank you for all the responses, I read them several weeks ago, but could not bring myself to reply at the time because it was just too painful at the time. My dad had 15 whole brain radiation treatments to start with he tolerated it quite well except for having a poor appetite due to food tasting different to him and getting less sleep due to the steroids. No complaints of pain/nausea/vomiting. He ended up having a seizure and went back into the hospital, this time they did do neurosurgery, I was told they removed 14 out of 18 tumors. The other 4 are too close to the brain stem to mess with. They also started him on Yervoy, so far no reactions or adverse effects. He has gotten 2/4 treatments. The doctors have tried 3 times unsuccessfully to wean him off the steroids, and every time he is unsteady, falls, and has confusion. My dad is 64 years old and he has deteriorated over the past 2 months losing 45 lbs, having difficulty doing the things he once loved and was good at. I am trying to be strong for him and not cry in front of him. Seeing this once strong healthy brilliant man become him frail is probably the most painful thing for me. I guess I want to know how hopeful to be, I have seen miracles in peoples stories here and sad ones. I have wanted to ask the doctor what his life expectancy is, but every time I'm at the appointment with him, I cannot bring myself to ask because I am afraid to hear the answer. Is there people out there that have had BRAF- Melanoma with Metz to the brain and lung that have survived and are living the life the want to? My dad has made it clear to me that if he "can't wipe his own ass, you had better pull the plug" (his words not mine). I want to follow his wishes and be realistic with how much quality time we will be able to spend together. Please respond if you can relate, or can fill me in on what I can expect down the road. Thank you!
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- March 14, 2015 at 2:41 am
First thank you for all the responses, I read them several weeks ago, but could not bring myself to reply at the time because it was just too painful at the time. My dad had 15 whole brain radiation treatments to start with he tolerated it quite well except for having a poor appetite due to food tasting different to him and getting less sleep due to the steroids. No complaints of pain/nausea/vomiting. He ended up having a seizure and went back into the hospital, this time they did do neurosurgery, I was told they removed 14 out of 18 tumors. The other 4 are too close to the brain stem to mess with. They also started him on Yervoy, so far no reactions or adverse effects. He has gotten 2/4 treatments. The doctors have tried 3 times unsuccessfully to wean him off the steroids, and every time he is unsteady, falls, and has confusion. My dad is 64 years old and he has deteriorated over the past 2 months losing 45 lbs, having difficulty doing the things he once loved and was good at. I am trying to be strong for him and not cry in front of him. Seeing this once strong healthy brilliant man become him frail is probably the most painful thing for me. I guess I want to know how hopeful to be, I have seen miracles in peoples stories here and sad ones. I have wanted to ask the doctor what his life expectancy is, but every time I'm at the appointment with him, I cannot bring myself to ask because I am afraid to hear the answer. Is there people out there that have had BRAF- Melanoma with Metz to the brain and lung that have survived and are living the life the want to? My dad has made it clear to me that if he "can't wipe his own ass, you had better pull the plug" (his words not mine). I want to follow his wishes and be realistic with how much quality time we will be able to spend together. Please respond if you can relate, or can fill me in on what I can expect down the road. Thank you!
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- January 26, 2015 at 4:05 pm
Braf negative means he cannot have the medicines that target the B-RAF gene mutation. Thus those treatment options are not available to him. However after awhile tumors can mutate and express enough of the braf gene so he could be retested and test positive. But that is usually many months at least down the road.
The rest of the FDA approved treatment path that seems to becoming more standard is Yervoy is next. Depending on how he does with this treatment and how affective it is the doc would probably go with one of the recently approved pd1 medicines. Either keytruda which is ever 3 weeks or opdivo which is every 2 weeks.
There are some older fda approved med as well.
The other route is a clinical trial but you have to go where the trial is.
Like was said making sure your doc is a melanoma specialist is important. Although it sounds like your doc is following the latest standard.
Going to one of the big centers for treatment could be very important. Like msk in ny, mofffitt in Tampa, mda in Houston and so forth.
Artie
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- January 26, 2015 at 4:05 pm
Braf negative means he cannot have the medicines that target the B-RAF gene mutation. Thus those treatment options are not available to him. However after awhile tumors can mutate and express enough of the braf gene so he could be retested and test positive. But that is usually many months at least down the road.
The rest of the FDA approved treatment path that seems to becoming more standard is Yervoy is next. Depending on how he does with this treatment and how affective it is the doc would probably go with one of the recently approved pd1 medicines. Either keytruda which is ever 3 weeks or opdivo which is every 2 weeks.
There are some older fda approved med as well.
The other route is a clinical trial but you have to go where the trial is.
Like was said making sure your doc is a melanoma specialist is important. Although it sounds like your doc is following the latest standard.
Going to one of the big centers for treatment could be very important. Like msk in ny, mofffitt in Tampa, mda in Houston and so forth.
Artie
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- January 27, 2015 at 12:16 am
Meliss-
Artie and Sherman said it best…if you're not seeing a melanoma specialist I would suggest finding one right away. Not sure where you live but there are plenty of people on this site who can give you good direction based on geographics. I'm so sorry you had to find this forum and what you're dad & family is going through. I wish him the best.
Josh
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- January 27, 2015 at 12:16 am
Meliss-
Artie and Sherman said it best…if you're not seeing a melanoma specialist I would suggest finding one right away. Not sure where you live but there are plenty of people on this site who can give you good direction based on geographics. I'm so sorry you had to find this forum and what you're dad & family is going through. I wish him the best.
Josh
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- January 27, 2015 at 12:16 am
Meliss-
Artie and Sherman said it best…if you're not seeing a melanoma specialist I would suggest finding one right away. Not sure where you live but there are plenty of people on this site who can give you good direction based on geographics. I'm so sorry you had to find this forum and what you're dad & family is going through. I wish him the best.
Josh
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