› Forums › General Melanoma Community › Brain Met
- This topic has 9 replies, 3 voices, and was last updated 11 years, 3 months ago by
tnsexton.
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- August 31, 2013 at 4:05 am
My husband (32 years old) was diagnosed in 2011 with Stage 3C Melanoma. Primary tumor in leg, traveled to two lymph nodes. After radiation and interferon treatment, he was in NED status for a year. Then a tumor showed up on top of his head in May of this year, it was completely removed with clean margins, and at the beginning of this month was considered in NED status.
My husband (32 years old) was diagnosed in 2011 with Stage 3C Melanoma. Primary tumor in leg, traveled to two lymph nodes. After radiation and interferon treatment, he was in NED status for a year. Then a tumor showed up on top of his head in May of this year, it was completely removed with clean margins, and at the beginning of this month was considered in NED status.
Last week his leg that he originally had surgery on was inflamed more than normal, he is use to it being swollen due to having complete lymph node removal, but he stated experiencing increased numbness that by the end of the week was having difficulty walking. MRI results came back, and he now has a solitary brain tumor. He JUST had an MRI and PET Scan, how on earth can this stupid disease just come back so quickly?
I knew it was going to continue to be a long hard journey when he advanced to stage 4, but I thought we had some time before it came back. We are meeting with surgeon next week, and hopefully he will have it removed before the end of the week.
I’ve been driving myself crazy with Google Searching on Melanoma Brain Mets, and I’m not finding much of any information on others having a single brain met. I see that the fewer, the better the prognosis, but the prognosis overall is still not good
Anyone have any information on this? What should we expect from here? We haven’t seen the doctor since prior to MRI, they called us with results (less than 24 hours from scan) to give results and change a steroid medication to hopefully help reduce swelling to help him walk, right now he has very little muscle control of his leg, and continues to get worse.
Radiation? Chemo? Clinical Trial?
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- August 31, 2013 at 4:53 am
So sorry for what you are going through. You DO have options and reasonable treatments available….although I KNOW…it is not what you want to be dealing with today or ever!!! If you do a search for brain mets on this forum…you will find a great deal of information. I dealt with a brain met myself in 2010…and am still alive and kicking…as are many on this board. I made a synopsis of the latest and greatest treatment options for brain mets on my blog (just google…chaotically precise…and it will come up, if you are interested) post dated June 2, 2013. The first post notes articles that were presented at ASCO and the later is my report about them. I hope this helps. I will try to answer additional questions should you have them. Make sure your husband is being seen by a melanoma specialist at an institution that provides care for lots of melanoma patients if at all possible. Many on this board have been through similar situations and can provide you with support and information. I wish you both the best. Celeste
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- August 31, 2013 at 4:53 am
So sorry for what you are going through. You DO have options and reasonable treatments available….although I KNOW…it is not what you want to be dealing with today or ever!!! If you do a search for brain mets on this forum…you will find a great deal of information. I dealt with a brain met myself in 2010…and am still alive and kicking…as are many on this board. I made a synopsis of the latest and greatest treatment options for brain mets on my blog (just google…chaotically precise…and it will come up, if you are interested) post dated June 2, 2013. The first post notes articles that were presented at ASCO and the later is my report about them. I hope this helps. I will try to answer additional questions should you have them. Make sure your husband is being seen by a melanoma specialist at an institution that provides care for lots of melanoma patients if at all possible. Many on this board have been through similar situations and can provide you with support and information. I wish you both the best. Celeste
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- August 31, 2013 at 4:53 am
So sorry for what you are going through. You DO have options and reasonable treatments available….although I KNOW…it is not what you want to be dealing with today or ever!!! If you do a search for brain mets on this forum…you will find a great deal of information. I dealt with a brain met myself in 2010…and am still alive and kicking…as are many on this board. I made a synopsis of the latest and greatest treatment options for brain mets on my blog (just google…chaotically precise…and it will come up, if you are interested) post dated June 2, 2013. The first post notes articles that were presented at ASCO and the later is my report about them. I hope this helps. I will try to answer additional questions should you have them. Make sure your husband is being seen by a melanoma specialist at an institution that provides care for lots of melanoma patients if at all possible. Many on this board have been through similar situations and can provide you with support and information. I wish you both the best. Celeste
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- August 31, 2013 at 4:37 pm
Not knowing where the brain met is (and not being a neurosurgeon) makes it hard to recommend a course of action but, I can give you some thoughts on what you might expect based on my experience.I had a single 1cm brain met show up at the beginning of my stage 4 battle in 12/2010. It was in the bach of the brain near the skull. Because of the location of the met, a neurosurgeon was able to perform a craniotomy on me to surgically remove the tumor. I was in the hospital for less than 48 hours. This surgery was followed up a few weeks later with some precise radiation to the tumor bed to make sure all the melanoma was dead. This was done as outpatient but took most of the day.
I should say that of my five surgeries, this was the easiest one for me and the hardest one on my dear wife and caregiver. It sounds horrific but I recovered quickly and had very little pain. A lot depends on location of the met. Your surgeon will tell you what to expect in terms of loss of brain function before you consent to the surgery or radiation.
You should also view the webinar on Brain Radiation by Dr. Veronica Chiang at the Melanoma International Foundation website. You and your husband may find some good info there.
Good luck.
Cltml
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- August 31, 2013 at 4:37 pm
Not knowing where the brain met is (and not being a neurosurgeon) makes it hard to recommend a course of action but, I can give you some thoughts on what you might expect based on my experience.I had a single 1cm brain met show up at the beginning of my stage 4 battle in 12/2010. It was in the bach of the brain near the skull. Because of the location of the met, a neurosurgeon was able to perform a craniotomy on me to surgically remove the tumor. I was in the hospital for less than 48 hours. This surgery was followed up a few weeks later with some precise radiation to the tumor bed to make sure all the melanoma was dead. This was done as outpatient but took most of the day.
I should say that of my five surgeries, this was the easiest one for me and the hardest one on my dear wife and caregiver. It sounds horrific but I recovered quickly and had very little pain. A lot depends on location of the met. Your surgeon will tell you what to expect in terms of loss of brain function before you consent to the surgery or radiation.
You should also view the webinar on Brain Radiation by Dr. Veronica Chiang at the Melanoma International Foundation website. You and your husband may find some good info there.
Good luck.
Cltml
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- August 31, 2013 at 4:37 pm
Not knowing where the brain met is (and not being a neurosurgeon) makes it hard to recommend a course of action but, I can give you some thoughts on what you might expect based on my experience.I had a single 1cm brain met show up at the beginning of my stage 4 battle in 12/2010. It was in the bach of the brain near the skull. Because of the location of the met, a neurosurgeon was able to perform a craniotomy on me to surgically remove the tumor. I was in the hospital for less than 48 hours. This surgery was followed up a few weeks later with some precise radiation to the tumor bed to make sure all the melanoma was dead. This was done as outpatient but took most of the day.
I should say that of my five surgeries, this was the easiest one for me and the hardest one on my dear wife and caregiver. It sounds horrific but I recovered quickly and had very little pain. A lot depends on location of the met. Your surgeon will tell you what to expect in terms of loss of brain function before you consent to the surgery or radiation.
You should also view the webinar on Brain Radiation by Dr. Veronica Chiang at the Melanoma International Foundation website. You and your husband may find some good info there.
Good luck.
Cltml
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- August 31, 2013 at 5:27 pm
Thank You both.. I will check it out the blog, and read other posts on this site.
I know the doctors will be able to answer my questions in full, but it's a long weekend, and the anxiety is driving me crazy. I'm so frustrated with reading the statistics on outcomes. I want to be realistic…but optimistic at the same time, and the more I read, the more frustrated I become. I find very few stories about brain mets that are positive, and I'm glad to hear that there are still lots of hope despite the situation.
He has several oncologists. One that has handled his radiation, that has a PET Scan company sharing the same building. This is how I believe we were able to get scheduled for an MRI in less than 24 hours from appointment, and then receive results the very next day.
His main oncologist that has handled his interferon and his on-going follow-ups works at Moffitt Cancer Center in Tampa, FL with the Melanoma Group one half day a week.
His surgeries have been mostly held at Moffitt, and after the last one he had, they said going forward all of his surgeries should be held here. From research and from what I’ve been told by doctors, Moffitt is a great cancer center, especially for Melanoma. We don’t know where the tumor is, or size, just that it has a lot of swelling that is impacting his muscle control of his left leg. He started steroids this morning , hopefully it will help him regain some muscle control, it’s very difficult for him to walk.
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- August 31, 2013 at 5:27 pm
Thank You both.. I will check it out the blog, and read other posts on this site.
I know the doctors will be able to answer my questions in full, but it's a long weekend, and the anxiety is driving me crazy. I'm so frustrated with reading the statistics on outcomes. I want to be realistic…but optimistic at the same time, and the more I read, the more frustrated I become. I find very few stories about brain mets that are positive, and I'm glad to hear that there are still lots of hope despite the situation.
He has several oncologists. One that has handled his radiation, that has a PET Scan company sharing the same building. This is how I believe we were able to get scheduled for an MRI in less than 24 hours from appointment, and then receive results the very next day.
His main oncologist that has handled his interferon and his on-going follow-ups works at Moffitt Cancer Center in Tampa, FL with the Melanoma Group one half day a week.
His surgeries have been mostly held at Moffitt, and after the last one he had, they said going forward all of his surgeries should be held here. From research and from what I’ve been told by doctors, Moffitt is a great cancer center, especially for Melanoma. We don’t know where the tumor is, or size, just that it has a lot of swelling that is impacting his muscle control of his left leg. He started steroids this morning , hopefully it will help him regain some muscle control, it’s very difficult for him to walk.
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- August 31, 2013 at 5:27 pm
Thank You both.. I will check it out the blog, and read other posts on this site.
I know the doctors will be able to answer my questions in full, but it's a long weekend, and the anxiety is driving me crazy. I'm so frustrated with reading the statistics on outcomes. I want to be realistic…but optimistic at the same time, and the more I read, the more frustrated I become. I find very few stories about brain mets that are positive, and I'm glad to hear that there are still lots of hope despite the situation.
He has several oncologists. One that has handled his radiation, that has a PET Scan company sharing the same building. This is how I believe we were able to get scheduled for an MRI in less than 24 hours from appointment, and then receive results the very next day.
His main oncologist that has handled his interferon and his on-going follow-ups works at Moffitt Cancer Center in Tampa, FL with the Melanoma Group one half day a week.
His surgeries have been mostly held at Moffitt, and after the last one he had, they said going forward all of his surgeries should be held here. From research and from what I’ve been told by doctors, Moffitt is a great cancer center, especially for Melanoma. We don’t know where the tumor is, or size, just that it has a lot of swelling that is impacting his muscle control of his left leg. He started steroids this morning , hopefully it will help him regain some muscle control, it’s very difficult for him to walk.
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