Brain Met- please need opinions

Betsy,

So sorry about the Brain Mets.  I think all of us who haven't had them live with that fear.  Please be patient as weekends a usually so and I suspect this weekend will be unusually so.  Who are you seeing now?  I am only stage 3 but I have been to the John Wayne Cancer center (Santa Monica) and saw Dr Faries – he is a surgical oncologist.  I am now at the Angeles Clinic in Los Angeles seeing Dr Hamid a Medical Oncologist who I also like very much.  Both these doctors seem to work closely together so it is very nice.

Others will talk to you about options for brain mets, we have some that have managed with them fairly well.

Good Luck,

Mary

Betsy,

So sorry about the Brain Mets.  I think all of us who haven't had them live with that fear.  Please be patient as weekends a usually so and I suspect this weekend will be unusually so.  Who are you seeing now?  I am only stage 3 but I have been to the John Wayne Cancer center (Santa Monica) and saw Dr Faries – he is a surgical oncologist.  I am now at the Angeles Clinic in Los Angeles seeing Dr Hamid a Medical Oncologist who I also like very much.  Both these doctors seem to work closely together so it is very nice.

Others will talk to you about options for brain mets, we have some that have managed with them fairly well.

Good Luck,

Mary

Betsy,

So sorry about the Brain Mets.  I think all of us who haven't had them live with that fear.  Please be patient as weekends a usually so and I suspect this weekend will be unusually so.  Who are you seeing now?  I am only stage 3 but I have been to the John Wayne Cancer center (Santa Monica) and saw Dr Faries – he is a surgical oncologist.  I am now at the Angeles Clinic in Los Angeles seeing Dr Hamid a Medical Oncologist who I also like very much.  Both these doctors seem to work closely together so it is very nice.

Others will talk to you about options for brain mets, we have some that have managed with them fairly well.

Good Luck,

Mary

The sooner you get to being treated, the better, is my understanding from a very good radiation oncologist. Almost 2 years ago, my last craniotomy at UCSF was done within a week after the tumors were discovered. Follow-up SRS was done 17 days after craniotomy. I've been very fortunate to be stable for almost 2 years after those procedures. 

Any met at any location is a shock and hard to deal with, so in a way, you've been through some of this before. For me the most frustration with brain mets has been being excluded, with active, untreated brain tumors, from almost all clinical trials. 

The decisions about craniotomy, SRS or both for me came from the recommendation by a tumor board (composed of neurosurgeons and radiation oncologists I believe). A tumor board would most almost certainly want to see your most recent MRI, PET and/or CT imaging, so if you can obtain those on CD-ROM to take with you to your facility of choice, that may make getting to a tumor board review more quickly. 

1. After 5 brain mets treated in total, I am a lot more easily fatigued. I don't handle multi-tasking or very complex work tasking like I used to. I have had to set a "new normal" for myself. Knock on wood though, I am doing OK. Other things are a blind spot in my visual field (occipital lobal craniotomy) and get some noticable tinnitus now. Some other weird symptoms have faded with time.

2. I was on steroids just for the weeks before and after craniotomies, and maybe a day or two around each SRS. I've been on anti-seizure meds for almost 3 years now, since first brain met found. After a recent EEG showed issues, I will be continuing on them.

3. I went from 1, to 2, to 4 to 5 over about 9 months (treated all along the way). Knock on wood "5" was almost two years ago.

4. I have no So. Cal. experience, but UCSF, where I've been, touts their ranking (currently #6) in neurology and neurosurgery, at least in the US News rankings of hospitals. The top ranked So. Cal hospitals in that report are Ronald Reagan UCLA (#12) and Cedars Sinai (#19). Good for you for doing research first, I just went to the same place I'd been seeing my oncologist.

Best wishes for you, and over the next few weeks as you choose the right treatment facility for you, and as soon as is practical.

– Kyle

The sooner you get to being treated, the better, is my understanding from a very good radiation oncologist. Almost 2 years ago, my last craniotomy at UCSF was done within a week after the tumors were discovered. Follow-up SRS was done 17 days after craniotomy. I've been very fortunate to be stable for almost 2 years after those procedures. 

Any met at any location is a shock and hard to deal with, so in a way, you've been through some of this before. For me the most frustration with brain mets has been being excluded, with active, untreated brain tumors, from almost all clinical trials. 

The decisions about craniotomy, SRS or both for me came from the recommendation by a tumor board (composed of neurosurgeons and radiation oncologists I believe). A tumor board would most almost certainly want to see your most recent MRI, PET and/or CT imaging, so if you can obtain those on CD-ROM to take with you to your facility of choice, that may make getting to a tumor board review more quickly. 

1. After 5 brain mets treated in total, I am a lot more easily fatigued. I don't handle multi-tasking or very complex work tasking like I used to. I have had to set a "new normal" for myself. Knock on wood though, I am doing OK. Other things are a blind spot in my visual field (occipital lobal craniotomy) and get some noticable tinnitus now. Some other weird symptoms have faded with time.

2. I was on steroids just for the weeks before and after craniotomies, and maybe a day or two around each SRS. I've been on anti-seizure meds for almost 3 years now, since first brain met found. After a recent EEG showed issues, I will be continuing on them.

3. I went from 1, to 2, to 4 to 5 over about 9 months (treated all along the way). Knock on wood "5" was almost two years ago.

4. I have no So. Cal. experience, but UCSF, where I've been, touts their ranking (currently #6) in neurology and neurosurgery, at least in the US News rankings of hospitals. The top ranked So. Cal hospitals in that report are Ronald Reagan UCLA (#12) and Cedars Sinai (#19). Good for you for doing research first, I just went to the same place I'd been seeing my oncologist.

Best wishes for you, and over the next few weeks as you choose the right treatment facility for you, and as soon as is practical.

– Kyle

The sooner you get to being treated, the better, is my understanding from a very good radiation oncologist. Almost 2 years ago, my last craniotomy at UCSF was done within a week after the tumors were discovered. Follow-up SRS was done 17 days after craniotomy. I've been very fortunate to be stable for almost 2 years after those procedures. 

Any met at any location is a shock and hard to deal with, so in a way, you've been through some of this before. For me the most frustration with brain mets has been being excluded, with active, untreated brain tumors, from almost all clinical trials. 

The decisions about craniotomy, SRS or both for me came from the recommendation by a tumor board (composed of neurosurgeons and radiation oncologists I believe). A tumor board would most almost certainly want to see your most recent MRI, PET and/or CT imaging, so if you can obtain those on CD-ROM to take with you to your facility of choice, that may make getting to a tumor board review more quickly. 

1. After 5 brain mets treated in total, I am a lot more easily fatigued. I don't handle multi-tasking or very complex work tasking like I used to. I have had to set a "new normal" for myself. Knock on wood though, I am doing OK. Other things are a blind spot in my visual field (occipital lobal craniotomy) and get some noticable tinnitus now. Some other weird symptoms have faded with time.

2. I was on steroids just for the weeks before and after craniotomies, and maybe a day or two around each SRS. I've been on anti-seizure meds for almost 3 years now, since first brain met found. After a recent EEG showed issues, I will be continuing on them.

3. I went from 1, to 2, to 4 to 5 over about 9 months (treated all along the way). Knock on wood "5" was almost two years ago.

4. I have no So. Cal. experience, but UCSF, where I've been, touts their ranking (currently #6) in neurology and neurosurgery, at least in the US News rankings of hospitals. The top ranked So. Cal hospitals in that report are Ronald Reagan UCLA (#12) and Cedars Sinai (#19). Good for you for doing research first, I just went to the same place I'd been seeing my oncologist.

Best wishes for you, and over the next few weeks as you choose the right treatment facility for you, and as soon as is practical.

– Kyle

As a general rule, I would lean towards surgery first to remove any tumor anywhere in the body– then you know that it's GONE. Furthermore, since it is gone, it will not disqualify you from any future clinical trials. However, SRS is a very sophisticated technique that causes very little damage to the rest of the brain. Some people here have had SRS 4 or 5 times and seem to be fine. So when you're talking about brain tumors, I would find a melanoma team that has a lot of experience with both surgery and SRS and follow their advice.

My brother had SRS to one brain met. He had no obvious side effects and was only on steroids for a couple of days afterward. As Kyle's experience shows, one can have several brain mets and treat each one as they happen. Definitey scarey and not very pleasant, but definitely treatable. 

The  Melanoma International Foundation web page has an excellent webinar about radiation for brain tumors. Check it out at: http://www.melanomainternational.org/news/brain_metastases1.html

One brain met does NOT spell "the end". Yours is very small and you found it very quickly. I thnk you're going to be fine.

As a general rule, I would lean towards surgery first to remove any tumor anywhere in the body– then you know that it's GONE. Furthermore, since it is gone, it will not disqualify you from any future clinical trials. However, SRS is a very sophisticated technique that causes very little damage to the rest of the brain. Some people here have had SRS 4 or 5 times and seem to be fine. So when you're talking about brain tumors, I would find a melanoma team that has a lot of experience with both surgery and SRS and follow their advice.

My brother had SRS to one brain met. He had no obvious side effects and was only on steroids for a couple of days afterward. As Kyle's experience shows, one can have several brain mets and treat each one as they happen. Definitey scarey and not very pleasant, but definitely treatable. 

The  Melanoma International Foundation web page has an excellent webinar about radiation for brain tumors. Check it out at: http://www.melanomainternational.org/news/brain_metastases1.html

One brain met does NOT spell "the end". Yours is very small and you found it very quickly. I thnk you're going to be fine.

As a general rule, I would lean towards surgery first to remove any tumor anywhere in the body– then you know that it's GONE. Furthermore, since it is gone, it will not disqualify you from any future clinical trials. However, SRS is a very sophisticated technique that causes very little damage to the rest of the brain. Some people here have had SRS 4 or 5 times and seem to be fine. So when you're talking about brain tumors, I would find a melanoma team that has a lot of experience with both surgery and SRS and follow their advice.

My brother had SRS to one brain met. He had no obvious side effects and was only on steroids for a couple of days afterward. As Kyle's experience shows, one can have several brain mets and treat each one as they happen. Definitey scarey and not very pleasant, but definitely treatable. 

The  Melanoma International Foundation web page has an excellent webinar about radiation for brain tumors. Check it out at: http://www.melanomainternational.org/news/brain_metastases1.html

One brain met does NOT spell "the end". Yours is very small and you found it very quickly. I thnk you're going to be fine.

A couple more thoughts Betsy.

Press your doctor on whether any of the approved systemic therapies — Zel if you're BRAF positive, or a reinduction with IPI which you've already done — can be done with the SRS and/or surgery. There's been some suspicions by oncologists that combining radiation and IPI can have strong effects including on exactly what you're afraid of — the possiblity of other, undetectable cells. I had a couple of systemic therapies including one aroud the time of the brain mets.

Second, here are some of the clinical trials accepting brain mets. If you qualify for any of them, and can travel if not in your local area, call the trial coorinator at each location and see if they and you think it's practical to travel. This search captures some but probably not all of the clinical trials accepting patients with brain mets. But the MRF trial finder I mentioned may be easier on you and also give you better results than, say, the search I'm pasting here: http://clinicaltrials.gov/ct2/results?recr=Open&cond=melanoma&titles=brain

-Kyle

A couple more thoughts Betsy.

Press your doctor on whether any of the approved systemic therapies — Zel if you're BRAF positive, or a reinduction with IPI which you've already done — can be done with the SRS and/or surgery. There's been some suspicions by oncologists that combining radiation and IPI can have strong effects including on exactly what you're afraid of — the possiblity of other, undetectable cells. I had a couple of systemic therapies including one aroud the time of the brain mets.

Second, here are some of the clinical trials accepting brain mets. If you qualify for any of them, and can travel if not in your local area, call the trial coorinator at each location and see if they and you think it's practical to travel. This search captures some but probably not all of the clinical trials accepting patients with brain mets. But the MRF trial finder I mentioned may be easier on you and also give you better results than, say, the search I'm pasting here: http://clinicaltrials.gov/ct2/results?recr=Open&cond=melanoma&titles=brain

-Kyle

A couple more thoughts Betsy.

Press your doctor on whether any of the approved systemic therapies — Zel if you're BRAF positive, or a reinduction with IPI which you've already done — can be done with the SRS and/or surgery. There's been some suspicions by oncologists that combining radiation and IPI can have strong effects including on exactly what you're afraid of — the possiblity of other, undetectable cells. I had a couple of systemic therapies including one aroud the time of the brain mets.

Second, here are some of the clinical trials accepting brain mets. If you qualify for any of them, and can travel if not in your local area, call the trial coorinator at each location and see if they and you think it's practical to travel. This search captures some but probably not all of the clinical trials accepting patients with brain mets. But the MRF trial finder I mentioned may be easier on you and also give you better results than, say, the search I'm pasting here: http://clinicaltrials.gov/ct2/results?recr=Open&cond=melanoma&titles=brain

-Kyle