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

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

  • Post
    glewis923
    Participant

      Met with radiologist and neurosurgeon today.  Some of ya'll with experience may can help me solve this delima, as I think Drs. will respect my wishes:

      1) A 1mm slice MRI will be done Tuesday to see if any more smaller spots shows up-he suspects it's highly possible.

      2) Dr. says if multiple smaller spots DO show up, then I may want to do WBR (whole brain Rad.) 1st to shrink/retard/kill? ALL the smaller spots while bigger spots can be held at bay-  then do cyber-knife on bigger spots 3-4 wks. from then.

      Met with radiologist and neurosurgeon today.  Some of ya'll with experience may can help me solve this delima, as I think Drs. will respect my wishes:

      1) A 1mm slice MRI will be done Tuesday to see if any more smaller spots shows up-he suspects it's highly possible.

      2) Dr. says if multiple smaller spots DO show up, then I may want to do WBR (whole brain Rad.) 1st to shrink/retard/kill? ALL the smaller spots while bigger spots can be held at bay-  then do cyber-knife on bigger spots 3-4 wks. from then.

      3) My concern is the fear that if I don't go ahead and get the 5 mm (plus or minus) two spots on each side of Basal Ganglia and the 4 mm spot on Thalamus, that they COULD? grow during WBR and IF they did they cannot be surgically removed IF they got too big for even cyber-knife to erradicate.

      4) Either way I'll be doing both proceedures.  Just trying to weigh odds of which to do 1st.

      5)  am I making any sense?  Bottom line:  Have any of you been faced with this delima?  Regaurdless, what would you do?  Just looking for direction from those with any similar experience.

      Thanks for ANY input, I'll take all i can get!

      PS. did like and feel in good hands with my Drs. at Baptist Memorial in JAX, FL.  Dr. Olson-Radiologist/former NIH researcher, and Dr. Chandler, neurosurgeon.  Both seemed very well versed in melanoma brain mets., however, i've come to a point to trust my own instincts combined with real life experiences of others.  My gut tells me to zap out the bigger and/or inaccesible mets first via cyber-knife, then worry about any smaller spots with WBR, even if 20 under 2 mm spots are found and my grow some while waiting 3 wks. btwn. cyber-knife and WBR. 

      Please give me your opinion; if i'm making any sense, that is!

      Thanks again & Love to ALL- Grady.

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    • Replies
        DonW
        Participant

          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.

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          DonW
          Participant

            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.

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              Jerry from Cape Cod
              Participant

                WBR is currently your only viable option for the smaller mets.   Systemic treatments (mainly ipi) are currently not available for brain mets in the compassionate use trial. Even if the systemic is available its kind of a crap shoot to see if it's going to work for you.

                I'd do the WBR first as it will have stabilizing effect on the larger mets.  With the smaller mets dealt with the radiologist will have a clearer picture of the task ahead and still be aware of any issues that may reoccure with the smaller mets. 

                I was fortunate with the ipi and it did work on the brain mets, but I seriously considered WBR followed by SRS for the 5 big guys.

                Best of luck

                Jerry from Cape Cod

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                Jerry from Cape Cod
                Participant

                  WBR is currently your only viable option for the smaller mets.   Systemic treatments (mainly ipi) are currently not available for brain mets in the compassionate use trial. Even if the systemic is available its kind of a crap shoot to see if it's going to work for you.

                  I'd do the WBR first as it will have stabilizing effect on the larger mets.  With the smaller mets dealt with the radiologist will have a clearer picture of the task ahead and still be aware of any issues that may reoccure with the smaller mets. 

                  I was fortunate with the ipi and it did work on the brain mets, but I seriously considered WBR followed by SRS for the 5 big guys.

                  Best of luck

                  Jerry from Cape Cod

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                TAC
                Participant

                  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.

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                  TAC
                  Participant

                    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.

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                    Carmon in NM
                    Participant

                      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!

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                      Carmon in NM
                      Participant

                        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!

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                          glewis923
                          Participant

                            Thanx. Carmon and Reat!  I'll keep ya'll posted.  Yes, i know Gamma/cyber/ NovalisTS-  all various types of Stereostatic Rsd.  I've actully had 5 rounds of carboplatin/taxol/aviastan myself for my lung mets, which have held stable 4 mths.  Now must debate trying IPI or remaining on taxol/carbopl. and perhaps temodar like you.  Had no signs of brain mets 11-4 2010….so Jan. 26th i have five around 5 mm…..so i guess i gotta think thy'er growing prttey fast….

                            Love ,  Grady, Bonita, & Family.

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                            glewis923
                            Participant

                              Thanx. Carmon and Reat!  I'll keep ya'll posted.  Yes, i know Gamma/cyber/ NovalisTS-  all various types of Stereostatic Rsd.  I've actully had 5 rounds of carboplatin/taxol/aviastan myself for my lung mets, which have held stable 4 mths.  Now must debate trying IPI or remaining on taxol/carbopl. and perhaps temodar like you.  Had no signs of brain mets 11-4 2010….so Jan. 26th i have five around 5 mm…..so i guess i gotta think thy'er growing prttey fast….

                              Love ,  Grady, Bonita, & Family.

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                            Acutelvn
                            Participant

                              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. 

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                              Acutelvn
                              Participant

                                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. 

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                                Sharyn
                                Participant

                                  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

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                                  Sharyn
                                  Participant

                                    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

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                                      glewis923
                                      Participant

                                        Thnx Sharyn-  got "extreme" MRI today complete with face-masking.  Rad. Dr. will coordinate with N-surgeon and i should get 2 biggest ones- around 1 cm. – zapped by Friday (they'll call tomorrow, or else!) …..then they will do 2 to 4 more subsequent SRS zaps (via Novalis TS) over next week or so.   THEN WBR i suppose.

                                        My delima now is what systemic treatment?  Been on Craboplaatin/Taxol/ Avistan  which HAS kept my several lung mets stable…..but it probably would'nt of helped long duration anyway- even without brain involvement.   So, my option could be IPI combined with Temodar?    Any ideas/ suggestions greatly solicited!!!   

                                        Thanks again for caring,  Love Grady & Family.

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                                        glewis923
                                        Participant

                                          Thnx Sharyn-  got "extreme" MRI today complete with face-masking.  Rad. Dr. will coordinate with N-surgeon and i should get 2 biggest ones- around 1 cm. – zapped by Friday (they'll call tomorrow, or else!) …..then they will do 2 to 4 more subsequent SRS zaps (via Novalis TS) over next week or so.   THEN WBR i suppose.

                                          My delima now is what systemic treatment?  Been on Craboplaatin/Taxol/ Avistan  which HAS kept my several lung mets stable…..but it probably would'nt of helped long duration anyway- even without brain involvement.   So, my option could be IPI combined with Temodar?    Any ideas/ suggestions greatly solicited!!!   

                                          Thanks again for caring,  Love Grady & Family.

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                                          jag
                                          Participant

                                            Grady, I would strongly reccomend IPI for a systemic treatment.  It has been shown to cross the blood brain barrier and have long lasting effects for some patients.  There is another BRAF type drug which also has been shown to work with brain tumors.  I'm pretty sure NicOz knows about this one, maybe she will chime in soon.

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                                            jag
                                            Participant

                                              Grady, I would strongly reccomend IPI for a systemic treatment.  It has been shown to cross the blood brain barrier and have long lasting effects for some patients.  There is another BRAF type drug which also has been shown to work with brain tumors.  I'm pretty sure NicOz knows about this one, maybe she will chime in soon.

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                                            Carole K
                                            Participant

                                              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

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                                              Carole K
                                              Participant

                                                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

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