Brain Club Srs.: Academic/anecdotal question on which should come 1st: WBR or Gamma/Cyber knife?

Hi, Grady. I'm a state I patient who has been hanging around MPIP since 1996 (think it was Jan 96). I'm not in your situation but I've seen a lot of patients who have been over the years. So, I'll make a few comments that are strictly the opinion of a non-professional.

WBR has been associated with dementia, which usually come on years afterwards. A search of the MPIP archives (the old archives accessed via the "archived bulletin board" link) will turn up many long winded threads on this. I think it might be worth your while to read them.  Also, the effectiveness of WBR has always been a question mark in my mind. Ask your docs about this and what data shows its effectiveness.

CyberKnife is one type of targeted brain surgery, but the most common type, at least until recently, is Gamma Knife, which is a completely different technology. Often a center will suggest one type of machine because that's what they have. You might investigate this and ask your docs why they favor CyberKnife.

Don't know that I've been necessarily very helpful, but I think you should consider these issues. Possibly zapping the mets that you can with targeted radiation and then following up with a systemic treatment that can be effective on brain mets could be an option.

Good luck and keep us posted.

Hi, Grady. I'm a state I patient who has been hanging around MPIP since 1996 (think it was Jan 96). I'm not in your situation but I've seen a lot of patients who have been over the years. So, I'll make a few comments that are strictly the opinion of a non-professional.

WBR has been associated with dementia, which usually come on years afterwards. A search of the MPIP archives (the old archives accessed via the "archived bulletin board" link) will turn up many long winded threads on this. I think it might be worth your while to read them.  Also, the effectiveness of WBR has always been a question mark in my mind. Ask your docs about this and what data shows its effectiveness.

CyberKnife is one type of targeted brain surgery, but the most common type, at least until recently, is Gamma Knife, which is a completely different technology. Often a center will suggest one type of machine because that's what they have. You might investigate this and ask your docs why they favor CyberKnife.

Don't know that I've been necessarily very helpful, but I think you should consider these issues. Possibly zapping the mets that you can with targeted radiation and then following up with a systemic treatment that can be effective on brain mets could be an option.

Good luck and keep us posted.

Your concern as outlined makes lots of sense to me. I have not had brain mets so I cannot tell you a personal experience story. Looks like they would want to go after the largest tumors fist and then do the smaller ones. You might ask them Cyberknife VS. Proton beam (at Shands in Gainesville).  Also, there is the issue of dementia after WBR. I guess if were me, I'd take my chances in order to get rid of the spots.

You might also ask about chemo that crosses the blood/brain barrier to get rid of small spots versus WBR. I have a cousin who has brain cancer…he is receiving chemo and radiation but his brain cancer is not melanoma.

Best of luck.

Your concern as outlined makes lots of sense to me. I have not had brain mets so I cannot tell you a personal experience story. Looks like they would want to go after the largest tumors fist and then do the smaller ones. You might ask them Cyberknife VS. Proton beam (at Shands in Gainesville).  Also, there is the issue of dementia after WBR. I guess if were me, I'd take my chances in order to get rid of the spots.

You might also ask about chemo that crosses the blood/brain barrier to get rid of small spots versus WBR. I have a cousin who has brain cancer…he is receiving chemo and radiation but his brain cancer is not melanoma.

Best of luck.

Hi Grady – I have/had 2 brain mets, one 4 mm at the front left portion and one 2×3 cm right temporal. One of the few things I remember while being mostly unconscious for three days after the large one bled and while waiting for a craniotomy, was adamently telling the neurosurgeon that I refused WBR! I felt strongly enough about avoiding it for myself that I drug myself out of unconsciousness to protest!

That said, I think a lot depends on how your particular brand of melanoma behaves. Mine has always been very slow growing and my onc assured me that she *only* recommended gamma knife in my case. Just for reference, the 2×3 cm met was at the large end of what could be handled with gamma knife so your mets would have a really long way to go to be too large.

Besides the craniotomy to relieve the hematoma, I had gamma knife on both the large and small met last July and follow up brain MRIs at 3 months and then at 2 month intervals have shown no new brain mets and the old ones are considered to be scar tissue. The large one shrank by 50% over time and my symptoms along with it.

After a new met showed up on my right adrenal gland in September, I started a chemical drug trial combining carboplatin, carbotaxol and temodar. After two infushions the adrenal met had shrunk by better than 50% so we are feeling pretty good about it! My next CT/brain MRI will be on the 16th along with my 5th infusion and we are hoping to continue to find no new mets and the adrenal one still shrinking. One more infusion after that and then surgery to remove the entire adrenal gland and hopefully I'll have a break from all this fun for a while!

I don't know if any of this helps you or not because like I said, I think you have to weigh the factors of your own health and how mel has behaved with you. If yours hasn't been particularly fast growing, then I think you will have some time if you decide to do WBR first. Also, one of the good things about gamma knife is that they can go back and repeat treatment on new mets with minimal harm to healthy tissue.  Best wishes to you and please let us know what you decide and how you are doing!

Hi Grady – I have/had 2 brain mets, one 4 mm at the front left portion and one 2×3 cm right temporal. One of the few things I remember while being mostly unconscious for three days after the large one bled and while waiting for a craniotomy, was adamently telling the neurosurgeon that I refused WBR! I felt strongly enough about avoiding it for myself that I drug myself out of unconsciousness to protest!

That said, I think a lot depends on how your particular brand of melanoma behaves. Mine has always been very slow growing and my onc assured me that she *only* recommended gamma knife in my case. Just for reference, the 2×3 cm met was at the large end of what could be handled with gamma knife so your mets would have a really long way to go to be too large.

Besides the craniotomy to relieve the hematoma, I had gamma knife on both the large and small met last July and follow up brain MRIs at 3 months and then at 2 month intervals have shown no new brain mets and the old ones are considered to be scar tissue. The large one shrank by 50% over time and my symptoms along with it.

After a new met showed up on my right adrenal gland in September, I started a chemical drug trial combining carboplatin, carbotaxol and temodar. After two infushions the adrenal met had shrunk by better than 50% so we are feeling pretty good about it! My next CT/brain MRI will be on the 16th along with my 5th infusion and we are hoping to continue to find no new mets and the adrenal one still shrinking. One more infusion after that and then surgery to remove the entire adrenal gland and hopefully I'll have a break from all this fun for a while!

I don't know if any of this helps you or not because like I said, I think you have to weigh the factors of your own health and how mel has behaved with you. If yours hasn't been particularly fast growing, then I think you will have some time if you decide to do WBR first. Also, one of the good things about gamma knife is that they can go back and repeat treatment on new mets with minimal harm to healthy tissue.  Best wishes to you and please let us know what you decide and how you are doing!

I had two tumors (1inch and 3/4 inch) in my brain this last October with debilitating headaches and vision changes. M peripheral vision on the left was almost gone. They put me on steroids and did a craniotomy a few days later, due to the size of the tumors, they could not risk gamma knife right away. Then a month later I had the gamma knife procedure. It was recommended  over WBR due to the memory loss possible with WBR. Although if there had been multiple mets, the would have gone with WBR. I am in AR with the fantastic doctors at UAMS. Dr. Day was a true blessing to me. I only moved here in June and wasn't sure what type of facilities they would have here, but I would tell anyone to come here. I came from Texas and had been to MD Anderson before. I have never had any treatment other than surgery and have yet to qualify for a clinical trial. Best of luck to you! After the crani I was in the hospital for a day and at the air show two days after I was released. I went back to work two days after gamma knife. Watch for the swelling, it was the most obvious side effect from the radiation. 

I had two tumors (1inch and 3/4 inch) in my brain this last October with debilitating headaches and vision changes. M peripheral vision on the left was almost gone. They put me on steroids and did a craniotomy a few days later, due to the size of the tumors, they could not risk gamma knife right away. Then a month later I had the gamma knife procedure. It was recommended  over WBR due to the memory loss possible with WBR. Although if there had been multiple mets, the would have gone with WBR. I am in AR with the fantastic doctors at UAMS. Dr. Day was a true blessing to me. I only moved here in June and wasn't sure what type of facilities they would have here, but I would tell anyone to come here. I came from Texas and had been to MD Anderson before. I have never had any treatment other than surgery and have yet to qualify for a clinical trial. Best of luck to you! After the crani I was in the hospital for a day and at the air show two days after I was released. I went back to work two days after gamma knife. Watch for the swelling, it was the most obvious side effect from the radiation. 

Hi Grady,

Just wanted to give you my experience with SRS. Oct 2009 I had 4 lesions @ 5mm, and multiple 1mm spots (about 13 at least). Had WBR Oct 29-Nov 12, followed by 2 rounds of Temodar. May 2010 I still had 4 x 5mm lesions, so they did Novalis (SRS). Three were reduced to scar tissue, and the 4th was too small to even bother with. However, I did have 2 more 5mm mets pop up, which I will be having zapped next Mon and Tues. Up to now, I have had no symptoms, but I have recently developed vision problems. One met is on my occipital lobe, causing black spaces in my peripheral vision.

Personally, both WBR and SRS were easy treatments, with no side effects. Novalis was quite effective, and no screws are employed in the procedure, but if you're any way claustrophobic, ask for a sedative. As for which one to do first, I wouldn't think it really matters. I would presume that both would be done in a timely fashion, so I'd go for whichever can be done first. Good luck with it.

Hugs

Sharyn, Stage IV

Hi Grady,

Just wanted to give you my experience with SRS. Oct 2009 I had 4 lesions @ 5mm, and multiple 1mm spots (about 13 at least). Had WBR Oct 29-Nov 12, followed by 2 rounds of Temodar. May 2010 I still had 4 x 5mm lesions, so they did Novalis (SRS). Three were reduced to scar tissue, and the 4th was too small to even bother with. However, I did have 2 more 5mm mets pop up, which I will be having zapped next Mon and Tues. Up to now, I have had no symptoms, but I have recently developed vision problems. One met is on my occipital lobe, causing black spaces in my peripheral vision.

Personally, both WBR and SRS were easy treatments, with no side effects. Novalis was quite effective, and no screws are employed in the procedure, but if you're any way claustrophobic, ask for a sedative. As for which one to do first, I wouldn't think it really matters. I would presume that both would be done in a timely fashion, so I'd go for whichever can be done first. Good luck with it.

Hugs

Sharyn, Stage IV

HI Grady,

I am so sorry to hear you are going through this. I too was faced with brain  met. I wanted to do Gamma Knife but my tumor burst so I had ot have a craniotomy.  I was fortunate to only have one tumor.  Grady, it sounds to me like you have done your homework and you KNOW WHAT IS BEST FOR GRADY….. GO FOR IT.. DO WHAT YOU FEEL IS BEST FOR YOU..  AND DON'T LOOK BACK.  Hang in there. 

Sending you big hugs'

Love and light

Carole

HI Grady,

I am so sorry to hear you are going through this. I too was faced with brain  met. I wanted to do Gamma Knife but my tumor burst so I had ot have a craniotomy.  I was fortunate to only have one tumor.  Grady, it sounds to me like you have done your homework and you KNOW WHAT IS BEST FOR GRADY….. GO FOR IT.. DO WHAT YOU FEEL IS BEST FOR YOU..  AND DON'T LOOK BACK.  Hang in there. 

Sending you big hugs'

Love and light

Carole