› Forums › General Melanoma Community › Zelboraf, Brain tumors, Anyone?
- This topic has 34 replies, 12 voices, and was last updated 11 years, 3 months ago by
M smith.
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- September 5, 2011 at 2:39 am
Fortunately, I started Zelboraf (new Roche name for "Braf drug") a week ago = Aug. 29th took 1st dose riding thru Macon ,GA. on way back from Winship / Emory in Hotlanta. Question:
does anyone else on here have brain tumors AND have taken/are taking Zelboraf or GSK equivalent?
If so, have it help with brain tumors?
Fortunately, I started Zelboraf (new Roche name for "Braf drug") a week ago = Aug. 29th took 1st dose riding thru Macon ,GA. on way back from Winship / Emory in Hotlanta. Question:
does anyone else on here have brain tumors AND have taken/are taking Zelboraf or GSK equivalent?
If so, have it help with brain tumors?
Very thankful just to be hanging around; feeling quite well overall- best in 2 years actually! If I can help anyone with ???s about my experience and/or my current Zelboraf regimin – please ask !
Take Care ALL & God Bless You- Love, Grady & Family.
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- September 5, 2011 at 7:53 pm
Hi, Grady,
I have several lung tumors and had a brain tumor that was resected. I opted not to do the whole brain radiation to take care of any residual cells floating around in my brain. I hope to begin Zelboraf in a couple of weeks after getting a complete set of scans on the 12th. I will be anxious to find out if "Z" does the trick!
God bless you and your family, too!
Cristy, Stage IV
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- September 5, 2011 at 7:53 pm
Hi, Grady,
I have several lung tumors and had a brain tumor that was resected. I opted not to do the whole brain radiation to take care of any residual cells floating around in my brain. I hope to begin Zelboraf in a couple of weeks after getting a complete set of scans on the 12th. I will be anxious to find out if "Z" does the trick!
God bless you and your family, too!
Cristy, Stage IV
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- September 6, 2011 at 4:56 pm
Hi there. Congrats on starting the Zelboraf. Have you had any side effects? I did the IPI but was taken off due to the fact it was tearing my immune system up. I've been without treatment for over a month and am to start on the Zelboraf next Mon. Are you doing the treatment for 6 months, correct? Scans every 2? Not sure if it's the same for everyone or not. May I ask when you take your pills? When doing the IPI I was also doing Temodar due to my brain mets so I've already lost my hear which I hear is a side effect of the Zelboraf. However, in my battle with melanoma I've learned side effects are different for everyone. I hope and pray this works for you and for all who are going to be on it.
God bless –
Chris
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- September 7, 2011 at 2:14 am
Hey Chris- No bad side effects except possibly sore leg "joints" and minor aches. Yes, 6 mths. and scans at either 1 or 2 mths.: supposed to be at Drs's discretion i think. I'm going to get them at 6 weeks at my discretion. Being i may still have numerous brain tumors, i must get MRI every 6 wks. or risk edema death. (been there almost, and don't wanna take that gamble again)…….I'm an early riser so i take 4 pills between 5 to 7 AM; then around 3 to 5 PM take 2nd round of 4. My hearing wasn't great to begin with, but 1 year of Interferon and 3 mths. of "triple chemo" have made my loss considerably worse. . I may do Temodar after i get next 30 day supply of trial pills. After that i think i can get the pills locally and do/take combine what i wish. I took 2 rounds of temodar while waiting for IPI back in March. Good luck and God-Speed with your treatment!
Grady.
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- September 7, 2011 at 2:14 am
Hey Chris- No bad side effects except possibly sore leg "joints" and minor aches. Yes, 6 mths. and scans at either 1 or 2 mths.: supposed to be at Drs's discretion i think. I'm going to get them at 6 weeks at my discretion. Being i may still have numerous brain tumors, i must get MRI every 6 wks. or risk edema death. (been there almost, and don't wanna take that gamble again)…….I'm an early riser so i take 4 pills between 5 to 7 AM; then around 3 to 5 PM take 2nd round of 4. My hearing wasn't great to begin with, but 1 year of Interferon and 3 mths. of "triple chemo" have made my loss considerably worse. . I may do Temodar after i get next 30 day supply of trial pills. After that i think i can get the pills locally and do/take combine what i wish. I took 2 rounds of temodar while waiting for IPI back in March. Good luck and God-Speed with your treatment!
Grady.
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- September 6, 2011 at 4:56 pm
Hi there. Congrats on starting the Zelboraf. Have you had any side effects? I did the IPI but was taken off due to the fact it was tearing my immune system up. I've been without treatment for over a month and am to start on the Zelboraf next Mon. Are you doing the treatment for 6 months, correct? Scans every 2? Not sure if it's the same for everyone or not. May I ask when you take your pills? When doing the IPI I was also doing Temodar due to my brain mets so I've already lost my hear which I hear is a side effect of the Zelboraf. However, in my battle with melanoma I've learned side effects are different for everyone. I hope and pray this works for you and for all who are going to be on it.
God bless –
Chris
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- September 6, 2011 at 10:06 pm
I don't think any of these immunology drugs pass into the brain.
I was on the GSK braf for six months and it was working beautifully. I felt good and the 100+ mets on my leg were all getting smaller. Then almost exactly at the 6 month mark my scan showed 2 brain stem mets and 1 bone met in my upper body, along with some large mets on my leg that looked different than the others that had been responding to the braf.
After a few excisions and lots of radition, I have been told I cannot go back on the GSK braf because it does not cross into the brain and would not be helpful to me at this point. I am on my second round of temodar and I feel like crap but it appears to be working. I do not have follow up scans for 3 more weeks. Will know more then.
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- September 7, 2011 at 1:55 am
Although disappointing to hear, thanks for letting me know. I thought the Braf drugs did cross the blood-brain B. in at least small ammounts, but i wasn't sure. Are you sure? I guess your Onc. or Neurosurgeon told you, and they should know.
Best of Wishes and prayers- Grady.
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- September 7, 2011 at 5:49 am
Grady, i start zelboraf tommorow after i see my onc…i will ask her about the blood brain barrier and this medication…i too thought that it did cross blood brain barrier…will post the answer tommorow…
scalp, hip, liver,breast, lung tumors
boots
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- September 8, 2011 at 2:18 am
Thanx boots. I also read some abstract today that i believe said "….some evidence " of BBB penetration. Still no definitive answer. Look forward to what your Onc. tells you. ….she may actually know. Quite a few Drs. are less familiar with MMel. than we are, I know that. My local Onc. and Mayo JAX Onc. are very knowledgeable OR will find the answer and let me know. Other Mel. "specialists" Drs. I 've seen are (believe or not) seemingly clueless, cryptic, and even condescending when you ask them simple questions! ….but I've been pretty blessed so far, so i shouldn't digress into gripe. Wishing you the Best,
Grady & Family.
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- September 8, 2011 at 3:10 am
Grady,
I asked my oncologist about the blood brain barrier and zelboraf…she told me that there is some evidence that it helps brain mets, but that noone really understands how much..yet…that there was ONE subset of individuals in ONE study that showed some benefit…sorry i couldn't offer more…
do they allow patients with brain mets on the Anti-PD 1 studies???? anti-PD1 is one of the 'blanket' treatments…like IL2 and yervoy that seems to have lots of potential…but i am not sure if any of these cross blood brain barrier…
I know there are starting combo trials with braf drugs also
boots
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- September 8, 2011 at 4:30 am
I read somewhere about anti-PD1/MDX-1106 being like "Son of Yervoy". Yervoy doesn't cross the BBB but some of the affected T-cells apparently do. So there's hope that anti-PD1 could be similar. Having just finished 4 cycle of Yervoy I hope that that some of those immune effects are crossing my BBB as well.
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- September 8, 2011 at 4:30 am
I read somewhere about anti-PD1/MDX-1106 being like "Son of Yervoy". Yervoy doesn't cross the BBB but some of the affected T-cells apparently do. So there's hope that anti-PD1 could be similar. Having just finished 4 cycle of Yervoy I hope that that some of those immune effects are crossing my BBB as well.
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- September 8, 2011 at 3:10 am
Grady,
I asked my oncologist about the blood brain barrier and zelboraf…she told me that there is some evidence that it helps brain mets, but that noone really understands how much..yet…that there was ONE subset of individuals in ONE study that showed some benefit…sorry i couldn't offer more…
do they allow patients with brain mets on the Anti-PD 1 studies???? anti-PD1 is one of the 'blanket' treatments…like IL2 and yervoy that seems to have lots of potential…but i am not sure if any of these cross blood brain barrier…
I know there are starting combo trials with braf drugs also
boots
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- September 8, 2011 at 2:18 am
Thanx boots. I also read some abstract today that i believe said "….some evidence " of BBB penetration. Still no definitive answer. Look forward to what your Onc. tells you. ….she may actually know. Quite a few Drs. are less familiar with MMel. than we are, I know that. My local Onc. and Mayo JAX Onc. are very knowledgeable OR will find the answer and let me know. Other Mel. "specialists" Drs. I 've seen are (believe or not) seemingly clueless, cryptic, and even condescending when you ask them simple questions! ….but I've been pretty blessed so far, so i shouldn't digress into gripe. Wishing you the Best,
Grady & Family.
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- September 7, 2011 at 5:49 am
Grady, i start zelboraf tommorow after i see my onc…i will ask her about the blood brain barrier and this medication…i too thought that it did cross blood brain barrier…will post the answer tommorow…
scalp, hip, liver,breast, lung tumors
boots
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- September 15, 2011 at 5:17 pm
After reading the other posts it looks like there may be some benfit from the Braf on the brain mets during the first round of effective treatment. Perhaps because my brain mets appeared while on the Braf – they are the cells that learned how to create another path to get around the Braf inhibitor. I am now up to three brain mets as I aquired the third one while on the Temador. I am now off all treatments and waiting it out on steroids until the chemo is out of my system. They are considering a chemo that is used for breast cancer – not sure of the name just yet.
Good luck with your treatment!
Laurie
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- September 15, 2011 at 5:17 pm
After reading the other posts it looks like there may be some benfit from the Braf on the brain mets during the first round of effective treatment. Perhaps because my brain mets appeared while on the Braf – they are the cells that learned how to create another path to get around the Braf inhibitor. I am now up to three brain mets as I aquired the third one while on the Temador. I am now off all treatments and waiting it out on steroids until the chemo is out of my system. They are considering a chemo that is used for breast cancer – not sure of the name just yet.
Good luck with your treatment!
Laurie
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- September 7, 2011 at 1:55 am
Although disappointing to hear, thanks for letting me know. I thought the Braf drugs did cross the blood-brain B. in at least small ammounts, but i wasn't sure. Are you sure? I guess your Onc. or Neurosurgeon told you, and they should know.
Best of Wishes and prayers- Grady.
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- September 6, 2011 at 10:06 pm
I don't think any of these immunology drugs pass into the brain.
I was on the GSK braf for six months and it was working beautifully. I felt good and the 100+ mets on my leg were all getting smaller. Then almost exactly at the 6 month mark my scan showed 2 brain stem mets and 1 bone met in my upper body, along with some large mets on my leg that looked different than the others that had been responding to the braf.
After a few excisions and lots of radition, I have been told I cannot go back on the GSK braf because it does not cross into the brain and would not be helpful to me at this point. I am on my second round of temodar and I feel like crap but it appears to be working. I do not have follow up scans for 3 more weeks. Will know more then.
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- September 8, 2011 at 5:05 am
I found the following article about the BRAF inhibitor GSK2118436 (dabrafenib). It has
shown promising results with brain metastases in a phase I/II study. See:
http://oncozine.ning.com/profiles/blogs/melanoma-drug-gsk2118436Hope this helps.
Frank from Australia
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- September 8, 2011 at 5:05 am
I found the following article about the BRAF inhibitor GSK2118436 (dabrafenib). It has
shown promising results with brain metastases in a phase I/II study. See:
http://oncozine.ning.com/profiles/blogs/melanoma-drug-gsk2118436Hope this helps.
Frank from Australia
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- September 8, 2011 at 1:03 pm
Hi Grady,
I am currently taking part in a clinical trial ionvestigating the effects of the GSK BRAF inhibitor on brain metastases (http://clinicaltrials.gov/ct2/show/NCT01266967). From what I can gather, there is little doubt that the drug can slow the growth of brain mets.
I have only had one set of monthly follow up scans, the second round is tomorrow actally. I have been on the drug for 8 weeks. So far so stable, though yesterday I did find a new subq lump.
I will let you know how things go with the scans.
Good luck!
Ben.
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- September 8, 2011 at 1:03 pm
Hi Grady,
I am currently taking part in a clinical trial ionvestigating the effects of the GSK BRAF inhibitor on brain metastases (http://clinicaltrials.gov/ct2/show/NCT01266967). From what I can gather, there is little doubt that the drug can slow the growth of brain mets.
I have only had one set of monthly follow up scans, the second round is tomorrow actally. I have been on the drug for 8 weeks. So far so stable, though yesterday I did find a new subq lump.
I will let you know how things go with the scans.
Good luck!
Ben.
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- October 4, 2011 at 12:38 am
Our story might be helpful to you.
My wife had one brain tumor. We had it gamma knifed (It had to be done before starting the Zelboraf trial). She's been on Zelboraf for 4 months now. The skin tumors and lung tumors down at least 90%. She was feeling 100% better.
Here's where it gets sketchy. 3 months into it, 4 more spots showed up on her brain scan. The doctor in Chicago said the spots were only bleeding from the tumors. Her thinking was why would the drug be working in 90% of the body, but the cancer growing aggressively in the brain? The doctor in Minneapolis said that the Zelboraf can't cross the blood brain barrier. The doc in Chicago said Zelboraf has excellent results on brain cancer.
So, we waited 3 weeks, then got more scans last week. the 4 spots were much bigger and there were numerous new cancer spots lighting up so the Zelboraf seems like it didn't work. She has also seen a great increase in bone cancer too.
She's now getting whole brain radiation, and things could be better.
I hope this helps a little. It seems there is honest disagreements on the effectiveness of zelboraf for brain cancer. By the way, she had no side effects from the zelboraf except for sun sensitivity. It was a miracle.
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- October 4, 2011 at 12:38 am
Our story might be helpful to you.
My wife had one brain tumor. We had it gamma knifed (It had to be done before starting the Zelboraf trial). She's been on Zelboraf for 4 months now. The skin tumors and lung tumors down at least 90%. She was feeling 100% better.
Here's where it gets sketchy. 3 months into it, 4 more spots showed up on her brain scan. The doctor in Chicago said the spots were only bleeding from the tumors. Her thinking was why would the drug be working in 90% of the body, but the cancer growing aggressively in the brain? The doctor in Minneapolis said that the Zelboraf can't cross the blood brain barrier. The doc in Chicago said Zelboraf has excellent results on brain cancer.
So, we waited 3 weeks, then got more scans last week. the 4 spots were much bigger and there were numerous new cancer spots lighting up so the Zelboraf seems like it didn't work. She has also seen a great increase in bone cancer too.
She's now getting whole brain radiation, and things could be better.
I hope this helps a little. It seems there is honest disagreements on the effectiveness of zelboraf for brain cancer. By the way, she had no side effects from the zelboraf except for sun sensitivity. It was a miracle.
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- October 31, 2012 at 1:51 am
my husband has stage 4 melanoma tumors everywhere. He started Zelboraf in April. May he had gamma knife for 3 brain tumors. late June he had 3 weeks of whole brain radiation for more brain tumors. scan came back no change. Scans at beginning of this month show rapidly growing existing and new brain tumors. We have been told by many oncologists that Zelboraf DOES NOT pass the blood brain barrier. Melanoma is so fast moving. Radiation oncologist cannot give him any more radiation without serious side effects. He did have some brain damage and hearing damage from the WBR in June. since radiation is out of the question my husband has chosen to stay on the zelboraf-which had helped reduce his body tumors.When he started zelboraf he had a lot of side effects but they went away after 3 months. His symptoms from brain mets are irritability, forgetfullness, headaches, loss of leg function. High dose of steroids have helped with his mobility but we know that is temporary. We were told he does not have very long. Our other onc is trying to steer us to Yervoy but my husband does not want more side effects for the remainder of time he has. All ocologists stated we may or may not have him till Christmas. My heart is heavy for all of you who deal with this dreaded disease. God bless
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- October 31, 2012 at 1:51 am
my husband has stage 4 melanoma tumors everywhere. He started Zelboraf in April. May he had gamma knife for 3 brain tumors. late June he had 3 weeks of whole brain radiation for more brain tumors. scan came back no change. Scans at beginning of this month show rapidly growing existing and new brain tumors. We have been told by many oncologists that Zelboraf DOES NOT pass the blood brain barrier. Melanoma is so fast moving. Radiation oncologist cannot give him any more radiation without serious side effects. He did have some brain damage and hearing damage from the WBR in June. since radiation is out of the question my husband has chosen to stay on the zelboraf-which had helped reduce his body tumors.When he started zelboraf he had a lot of side effects but they went away after 3 months. His symptoms from brain mets are irritability, forgetfullness, headaches, loss of leg function. High dose of steroids have helped with his mobility but we know that is temporary. We were told he does not have very long. Our other onc is trying to steer us to Yervoy but my husband does not want more side effects for the remainder of time he has. All ocologists stated we may or may not have him till Christmas. My heart is heavy for all of you who deal with this dreaded disease. God bless
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- October 31, 2012 at 1:51 am
my husband has stage 4 melanoma tumors everywhere. He started Zelboraf in April. May he had gamma knife for 3 brain tumors. late June he had 3 weeks of whole brain radiation for more brain tumors. scan came back no change. Scans at beginning of this month show rapidly growing existing and new brain tumors. We have been told by many oncologists that Zelboraf DOES NOT pass the blood brain barrier. Melanoma is so fast moving. Radiation oncologist cannot give him any more radiation without serious side effects. He did have some brain damage and hearing damage from the WBR in June. since radiation is out of the question my husband has chosen to stay on the zelboraf-which had helped reduce his body tumors.When he started zelboraf he had a lot of side effects but they went away after 3 months. His symptoms from brain mets are irritability, forgetfullness, headaches, loss of leg function. High dose of steroids have helped with his mobility but we know that is temporary. We were told he does not have very long. Our other onc is trying to steer us to Yervoy but my husband does not want more side effects for the remainder of time he has. All ocologists stated we may or may not have him till Christmas. My heart is heavy for all of you who deal with this dreaded disease. God bless
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- January 3, 2013 at 5:26 pm
I have stage 4 melanoma with 6 brain tumours. I have had one tumour removed and been on zelboraf for nearly 4 months my latest scan showed that my brain tumours have halved in size! Which is excellent news!!! However the side effects of zelboraf. Are getting worse mr leg pain and joint pain also a pain in legs which feels like broken glass!!! Tiredness does anyone else have these symptoms? Heat helps but wondered if the symptoms stops or gets worse? -
- January 3, 2013 at 5:26 pm
I have stage 4 melanoma with 6 brain tumours. I have had one tumour removed and been on zelboraf for nearly 4 months my latest scan showed that my brain tumours have halved in size! Which is excellent news!!! However the side effects of zelboraf. Are getting worse mr leg pain and joint pain also a pain in legs which feels like broken glass!!! Tiredness does anyone else have these symptoms? Heat helps but wondered if the symptoms stops or gets worse? -
- January 3, 2013 at 5:26 pm
I have stage 4 melanoma with 6 brain tumours. I have had one tumour removed and been on zelboraf for nearly 4 months my latest scan showed that my brain tumours have halved in size! Which is excellent news!!! However the side effects of zelboraf. Are getting worse mr leg pain and joint pain also a pain in legs which feels like broken glass!!! Tiredness does anyone else have these symptoms? Heat helps but wondered if the symptoms stops or gets worse?
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