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- This topic has 54 replies, 6 voices, and was last updated 11 years, 6 months ago by
Caretaker.
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- October 27, 2012 at 9:23 pm
Hi,
Been reading for a while; this is my first post. I'm caretaker for the most wonderful man in the world, diagnosed stage IV & metastisized all over his body at the end of June, including a tumor on each of his frontal lobes. He had a heart attack 3 weeks later, which postponed the start of Z until the end of July, app. 3 months at this point.
At first, Z was working like gang busters, and 2-month MRI, cat scan, and pet scan showed progress. His energy level was up,and he even gained a couple of pounds.
Hi,
Been reading for a while; this is my first post. I'm caretaker for the most wonderful man in the world, diagnosed stage IV & metastisized all over his body at the end of June, including a tumor on each of his frontal lobes. He had a heart attack 3 weeks later, which postponed the start of Z until the end of July, app. 3 months at this point.
At first, Z was working like gang busters, and 2-month MRI, cat scan, and pet scan showed progress. His energy level was up,and he even gained a couple of pounds.
A couple of weeks ago his energy level began dropping slowly. Within the past week, he began behaving/thinking/not remembering as one who has Alzheimer's. His oncologist put him in the hospital Friday (when she came back from her vacation). His heart meds need recalibrating as his bp and pulse were too low, and another brain mri was taken. Today we found out he has "multiple new lesions" on the brain. We don't know how many, and this oncologist doesn't do hospital visits. (I know. I wish we'd known that when we started but we're pretty new in town.) He's losing weight again (app. 45 pounds total so far), no energy, and gets emotionally upset easily and constantly.
I'd like to know if any of you have had Z work for 3 months and then quit?
If this was you, would you try a different chemo? Would you try an alternative and, if so, which – Gerson's, baking soda and maple syrup, high dose Vitamin C, other??
And also, if this happened to you and Z kicked back in, please let me know that, too!
Thank you for reading, all, and please keep sharing your wonderful stories!
Peace,
Caretaker
- Replies
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- October 27, 2012 at 9:34 pm
Hi Caretaker,
I'm sorry your husband is going through a rough time. I'm puzzled, myself, as to the extent that Z penetrates the blood-brain barrier. Some posts say it's not effective while another one I'd recently read hinted that it did.
One drug that's been successful with melanoma that's spread to the brain is something called dabrafenib. I don't know if it's FDA approved yet but you may be able to get it by qualifying for a trial or maybe getting it on a compassionate use basis. There are other members here who have better knowledge of this than I do. Hang in there, one of them should be dropping by shortly with a reply.
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- October 27, 2012 at 9:34 pm
Hi Caretaker,
I'm sorry your husband is going through a rough time. I'm puzzled, myself, as to the extent that Z penetrates the blood-brain barrier. Some posts say it's not effective while another one I'd recently read hinted that it did.
One drug that's been successful with melanoma that's spread to the brain is something called dabrafenib. I don't know if it's FDA approved yet but you may be able to get it by qualifying for a trial or maybe getting it on a compassionate use basis. There are other members here who have better knowledge of this than I do. Hang in there, one of them should be dropping by shortly with a reply.
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- October 27, 2012 at 9:34 pm
Hi Caretaker,
I'm sorry your husband is going through a rough time. I'm puzzled, myself, as to the extent that Z penetrates the blood-brain barrier. Some posts say it's not effective while another one I'd recently read hinted that it did.
One drug that's been successful with melanoma that's spread to the brain is something called dabrafenib. I don't know if it's FDA approved yet but you may be able to get it by qualifying for a trial or maybe getting it on a compassionate use basis. There are other members here who have better knowledge of this than I do. Hang in there, one of them should be dropping by shortly with a reply.
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- October 27, 2012 at 11:25 pm
Zelboraf does pass through the brain barrier but for many it only works for a few months. Yervoy is passing thru the brain barrier for SOME but it does take time. There are some that take Temador but even less helps with melanoma but your husband might be one of the lucky ones! Has he had any radiation?
I am also on zelboraf for brain mets. I was told 50% are eligible and of those eligible 50 % respond. To my knowledge once you take zel you can't find a trial that will use zel with a combination with MEK. I had originally looked into one of those trials but had to wait 3 months to show that the brain mets were stable, I knew I couldn't wait that long.
Your oncologist must be associated with some hospital. Can you transfer your husband? I know how difficult this is and I'm having real issues with the zelboraf. Right now I have been taken off of it and we will discuss it next week. We are each different but if I find out anything helpful I will post.
I have never head of baking soda and maple as an alternative. Gerson's has been discussed many on this board but haven't heard of it being successful with melanoma.
Best wishes,
Linda
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- October 28, 2012 at 11:47 am
Good morning, Linda,
He has not had radiation. He was set up for gamma knife 2 days after his heart attack, but after starting Z oncologist wanted to wait to see what it did to the brain mets. I'm saddened to read that the Z/MEK trial is now out. (Tried to talk w/ oncologist re: trials BEFORE anything got going and she said that was "premature." Now here we are.)
We are sitting in the hospital w/ which the oncologist is associated as I write this.
Please let us know how your conversation goes next week, and share your issues if time allows.
Many thanks,
Caretaker
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- October 28, 2012 at 11:47 am
Good morning, Linda,
He has not had radiation. He was set up for gamma knife 2 days after his heart attack, but after starting Z oncologist wanted to wait to see what it did to the brain mets. I'm saddened to read that the Z/MEK trial is now out. (Tried to talk w/ oncologist re: trials BEFORE anything got going and she said that was "premature." Now here we are.)
We are sitting in the hospital w/ which the oncologist is associated as I write this.
Please let us know how your conversation goes next week, and share your issues if time allows.
Many thanks,
Caretaker
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- October 28, 2012 at 11:47 am
Good morning, Linda,
He has not had radiation. He was set up for gamma knife 2 days after his heart attack, but after starting Z oncologist wanted to wait to see what it did to the brain mets. I'm saddened to read that the Z/MEK trial is now out. (Tried to talk w/ oncologist re: trials BEFORE anything got going and she said that was "premature." Now here we are.)
We are sitting in the hospital w/ which the oncologist is associated as I write this.
Please let us know how your conversation goes next week, and share your issues if time allows.
Many thanks,
Caretaker
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- October 29, 2012 at 4:59 am
Good luck in the storm!!
I forgot to tell you that with my first scan my brain tumors had all shrunk or stayed stable. I was taken off last week because of side effects with my eyes. I went to a specialist on Friday and he and my oncologist are discussing what to do. I have insane itching and am already on steroids!! I had changed shampoo and am hoping that now that I went back to my old that this ends.
I was originally supposed to be in a trial for zel with brain mets. They are doing this trial to prove the science behind that zel goes thru the brain barrier that they had learned from the original trials but looked at the information that they had gathered. This is a small trial, I think 120. I ended up not staying in the trial because they would not accept my original b-raf biopsy because it was done a few years ago and they needed to test the tissue again. I live on the east coast and the testing had to be done in Calif. It was going to take 3 longer after they had already put me off a few weeks ago because I had been in the hospital. At that point I dropped out of the trial.
All oncologists are biased with the trials that they deal with. 2nd opinions are always a good idea!
Linda
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- October 29, 2012 at 4:59 am
Good luck in the storm!!
I forgot to tell you that with my first scan my brain tumors had all shrunk or stayed stable. I was taken off last week because of side effects with my eyes. I went to a specialist on Friday and he and my oncologist are discussing what to do. I have insane itching and am already on steroids!! I had changed shampoo and am hoping that now that I went back to my old that this ends.
I was originally supposed to be in a trial for zel with brain mets. They are doing this trial to prove the science behind that zel goes thru the brain barrier that they had learned from the original trials but looked at the information that they had gathered. This is a small trial, I think 120. I ended up not staying in the trial because they would not accept my original b-raf biopsy because it was done a few years ago and they needed to test the tissue again. I live on the east coast and the testing had to be done in Calif. It was going to take 3 longer after they had already put me off a few weeks ago because I had been in the hospital. At that point I dropped out of the trial.
All oncologists are biased with the trials that they deal with. 2nd opinions are always a good idea!
Linda
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- October 29, 2012 at 4:59 am
Good luck in the storm!!
I forgot to tell you that with my first scan my brain tumors had all shrunk or stayed stable. I was taken off last week because of side effects with my eyes. I went to a specialist on Friday and he and my oncologist are discussing what to do. I have insane itching and am already on steroids!! I had changed shampoo and am hoping that now that I went back to my old that this ends.
I was originally supposed to be in a trial for zel with brain mets. They are doing this trial to prove the science behind that zel goes thru the brain barrier that they had learned from the original trials but looked at the information that they had gathered. This is a small trial, I think 120. I ended up not staying in the trial because they would not accept my original b-raf biopsy because it was done a few years ago and they needed to test the tissue again. I live on the east coast and the testing had to be done in Calif. It was going to take 3 longer after they had already put me off a few weeks ago because I had been in the hospital. At that point I dropped out of the trial.
All oncologists are biased with the trials that they deal with. 2nd opinions are always a good idea!
Linda
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- October 29, 2012 at 11:57 am
Hi, Linda,
Thank you for the additional info. I'm so sorry you're going through this crazy ride, too. I searched trials yesterday, found a list of 15, none for which my sweetie is eligible; either because of the heart problems he has now because of the heart attack, or because he's already done the Z. And unless the trials were conducted down the road, the expense would preclude us, and he's really not strong enough for any major traveling.
I'm going to look into getting a second opinion. Thank you for shaking the cob webs out of brain on that suggestion!
Sending out a prayer that your old shampoo relieves your symptoms…
All best,
Caretaker
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- October 29, 2012 at 11:57 am
Hi, Linda,
Thank you for the additional info. I'm so sorry you're going through this crazy ride, too. I searched trials yesterday, found a list of 15, none for which my sweetie is eligible; either because of the heart problems he has now because of the heart attack, or because he's already done the Z. And unless the trials were conducted down the road, the expense would preclude us, and he's really not strong enough for any major traveling.
I'm going to look into getting a second opinion. Thank you for shaking the cob webs out of brain on that suggestion!
Sending out a prayer that your old shampoo relieves your symptoms…
All best,
Caretaker
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- October 31, 2012 at 9:00 pm
Had my ct today. I've been on 4 pills a day on the zel. We weren't sure if the lungs were lung junk or melanoma. 2 of the spots had been there for 2 years with only growing a few mm. Today we saw that 2 are totally gone and the third is only a shadow that they can find by overlapping the scans! The mri is in 4 weeks.
Because we know that zel might not keep working and because of the horrible side effects our plan is to finish discussing after the next brain mri. They are applying to my insurance so it will be a quick and smooth . We will discuss this again after the scan.
Linda
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- October 31, 2012 at 9:00 pm
Had my ct today. I've been on 4 pills a day on the zel. We weren't sure if the lungs were lung junk or melanoma. 2 of the spots had been there for 2 years with only growing a few mm. Today we saw that 2 are totally gone and the third is only a shadow that they can find by overlapping the scans! The mri is in 4 weeks.
Because we know that zel might not keep working and because of the horrible side effects our plan is to finish discussing after the next brain mri. They are applying to my insurance so it will be a quick and smooth . We will discuss this again after the scan.
Linda
-
- October 31, 2012 at 9:00 pm
Had my ct today. I've been on 4 pills a day on the zel. We weren't sure if the lungs were lung junk or melanoma. 2 of the spots had been there for 2 years with only growing a few mm. Today we saw that 2 are totally gone and the third is only a shadow that they can find by overlapping the scans! The mri is in 4 weeks.
Because we know that zel might not keep working and because of the horrible side effects our plan is to finish discussing after the next brain mri. They are applying to my insurance so it will be a quick and smooth . We will discuss this again after the scan.
Linda
-
- October 29, 2012 at 11:57 am
Hi, Linda,
Thank you for the additional info. I'm so sorry you're going through this crazy ride, too. I searched trials yesterday, found a list of 15, none for which my sweetie is eligible; either because of the heart problems he has now because of the heart attack, or because he's already done the Z. And unless the trials were conducted down the road, the expense would preclude us, and he's really not strong enough for any major traveling.
I'm going to look into getting a second opinion. Thank you for shaking the cob webs out of brain on that suggestion!
Sending out a prayer that your old shampoo relieves your symptoms…
All best,
Caretaker
-
- October 27, 2012 at 11:25 pm
Zelboraf does pass through the brain barrier but for many it only works for a few months. Yervoy is passing thru the brain barrier for SOME but it does take time. There are some that take Temador but even less helps with melanoma but your husband might be one of the lucky ones! Has he had any radiation?
I am also on zelboraf for brain mets. I was told 50% are eligible and of those eligible 50 % respond. To my knowledge once you take zel you can't find a trial that will use zel with a combination with MEK. I had originally looked into one of those trials but had to wait 3 months to show that the brain mets were stable, I knew I couldn't wait that long.
Your oncologist must be associated with some hospital. Can you transfer your husband? I know how difficult this is and I'm having real issues with the zelboraf. Right now I have been taken off of it and we will discuss it next week. We are each different but if I find out anything helpful I will post.
I have never head of baking soda and maple as an alternative. Gerson's has been discussed many on this board but haven't heard of it being successful with melanoma.
Best wishes,
Linda
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- October 27, 2012 at 11:25 pm
Zelboraf does pass through the brain barrier but for many it only works for a few months. Yervoy is passing thru the brain barrier for SOME but it does take time. There are some that take Temador but even less helps with melanoma but your husband might be one of the lucky ones! Has he had any radiation?
I am also on zelboraf for brain mets. I was told 50% are eligible and of those eligible 50 % respond. To my knowledge once you take zel you can't find a trial that will use zel with a combination with MEK. I had originally looked into one of those trials but had to wait 3 months to show that the brain mets were stable, I knew I couldn't wait that long.
Your oncologist must be associated with some hospital. Can you transfer your husband? I know how difficult this is and I'm having real issues with the zelboraf. Right now I have been taken off of it and we will discuss it next week. We are each different but if I find out anything helpful I will post.
I have never head of baking soda and maple as an alternative. Gerson's has been discussed many on this board but haven't heard of it being successful with melanoma.
Best wishes,
Linda
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- October 28, 2012 at 12:44 am
I am so sorry that this is happening. I hate melanoma. My understanding from my oncologist is that once Zelboraf fails (quits working) then you need to look at different options. On average, it works only 7 months, so that means half of the people will be less than 7 months and half more than 7 months. I did have Zel resolve one small (4 mm) area in my brain.-
- October 28, 2012 at 11:51 am
Thanks so much for sharing your experience w/ Z. So happy to learn that it helped with your brain met! Do you recall how long you had been taking it when it worked? (MRIs showed that one tumor was shrinking and the other hadn't gotten larger after 2 months. This was not the cause of the memory probelms we wawnted to hear.
All very best to you…stay strong,
Caretaker
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- October 28, 2012 at 11:51 am
Thanks so much for sharing your experience w/ Z. So happy to learn that it helped with your brain met! Do you recall how long you had been taking it when it worked? (MRIs showed that one tumor was shrinking and the other hadn't gotten larger after 2 months. This was not the cause of the memory probelms we wawnted to hear.
All very best to you…stay strong,
Caretaker
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- October 28, 2012 at 2:40 pm
Nobody knows for sure if Zelboraf passes the blood-brain barrier or not. Anyone with brain mets was excluded from the Zelboraf clinical trials. They are now conducting new clinical trials of Zelboraf on people with brain mets, but the results are not in yet. There are some anecdotal reports (including here on the forum) that Z does work on brain mets. Maybe it depends on the patient. They do know for sure that Zelboraf does work on melanoma in the rest of the body– that is, about 50% of the people who take it respond and the response is an average of 7-8 months.
My brother has been on Zelboraf for 3 months. He got shrinkage and/or disappearance of all of the many tumors in his body. He also developed 2 new brain mets. Did the mets perphaps get started before he went on Z, or is Z not working in his brain? Only time will tell. He got the brain tumors zapped with gamma knife treatment at Moffitt in Tampa and is continuing on Z. He has few side effects and feels good. However, we won't know anything for sure until the next set of scans 2 months from now.
You didn't say whether your husband has tumors elsewhere in his body. If he does, is the Zelboraf working to shrink them? If it is working, I would advise him to get gamma knife treatment on the brain mets and continue with Z. If the Z is not working on the rest of his tumors, then you should probably switch to something else.
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- October 28, 2012 at 2:40 pm
Nobody knows for sure if Zelboraf passes the blood-brain barrier or not. Anyone with brain mets was excluded from the Zelboraf clinical trials. They are now conducting new clinical trials of Zelboraf on people with brain mets, but the results are not in yet. There are some anecdotal reports (including here on the forum) that Z does work on brain mets. Maybe it depends on the patient. They do know for sure that Zelboraf does work on melanoma in the rest of the body– that is, about 50% of the people who take it respond and the response is an average of 7-8 months.
My brother has been on Zelboraf for 3 months. He got shrinkage and/or disappearance of all of the many tumors in his body. He also developed 2 new brain mets. Did the mets perphaps get started before he went on Z, or is Z not working in his brain? Only time will tell. He got the brain tumors zapped with gamma knife treatment at Moffitt in Tampa and is continuing on Z. He has few side effects and feels good. However, we won't know anything for sure until the next set of scans 2 months from now.
You didn't say whether your husband has tumors elsewhere in his body. If he does, is the Zelboraf working to shrink them? If it is working, I would advise him to get gamma knife treatment on the brain mets and continue with Z. If the Z is not working on the rest of his tumors, then you should probably switch to something else.
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- October 28, 2012 at 2:40 pm
Nobody knows for sure if Zelboraf passes the blood-brain barrier or not. Anyone with brain mets was excluded from the Zelboraf clinical trials. They are now conducting new clinical trials of Zelboraf on people with brain mets, but the results are not in yet. There are some anecdotal reports (including here on the forum) that Z does work on brain mets. Maybe it depends on the patient. They do know for sure that Zelboraf does work on melanoma in the rest of the body– that is, about 50% of the people who take it respond and the response is an average of 7-8 months.
My brother has been on Zelboraf for 3 months. He got shrinkage and/or disappearance of all of the many tumors in his body. He also developed 2 new brain mets. Did the mets perphaps get started before he went on Z, or is Z not working in his brain? Only time will tell. He got the brain tumors zapped with gamma knife treatment at Moffitt in Tampa and is continuing on Z. He has few side effects and feels good. However, we won't know anything for sure until the next set of scans 2 months from now.
You didn't say whether your husband has tumors elsewhere in his body. If he does, is the Zelboraf working to shrink them? If it is working, I would advise him to get gamma knife treatment on the brain mets and continue with Z. If the Z is not working on the rest of his tumors, then you should probably switch to something else.
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- October 29, 2012 at 12:15 am
We're in the middle of Hurricane Sandy territory, so expecting power outage. I want to respond to everyone, and this is such – THANK YOU. I'll be back, I hope, after the hurricane has passed. I hope all of you are out of harm's way.
Yes, hubby DOES have tumors elsewhere that have shrunk, as per a 2 month repeat of pictures.
HOPE…always appreciated. I'm looking forward to what oncologist has to say. (Although, she studied at Sloan-Kettering, and knows the Z "inventor," and I worry about her bias…a lot.)
I'll get back after this storm to all. In the meantime, blessing to all who are in this boat…I feel as if I've found fellow crew members, and wish all with this dreaded albatross the best of health.
{{{}}}
Caretaker
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- October 29, 2012 at 12:15 am
We're in the middle of Hurricane Sandy territory, so expecting power outage. I want to respond to everyone, and this is such – THANK YOU. I'll be back, I hope, after the hurricane has passed. I hope all of you are out of harm's way.
Yes, hubby DOES have tumors elsewhere that have shrunk, as per a 2 month repeat of pictures.
HOPE…always appreciated. I'm looking forward to what oncologist has to say. (Although, she studied at Sloan-Kettering, and knows the Z "inventor," and I worry about her bias…a lot.)
I'll get back after this storm to all. In the meantime, blessing to all who are in this boat…I feel as if I've found fellow crew members, and wish all with this dreaded albatross the best of health.
{{{}}}
Caretaker
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- October 29, 2012 at 12:15 am
We're in the middle of Hurricane Sandy territory, so expecting power outage. I want to respond to everyone, and this is such – THANK YOU. I'll be back, I hope, after the hurricane has passed. I hope all of you are out of harm's way.
Yes, hubby DOES have tumors elsewhere that have shrunk, as per a 2 month repeat of pictures.
HOPE…always appreciated. I'm looking forward to what oncologist has to say. (Although, she studied at Sloan-Kettering, and knows the Z "inventor," and I worry about her bias…a lot.)
I'll get back after this storm to all. In the meantime, blessing to all who are in this boat…I feel as if I've found fellow crew members, and wish all with this dreaded albatross the best of health.
{{{}}}
Caretaker
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- October 28, 2012 at 3:23 pm
I had response in my brain and heart at 2 and 4 month scans. There is a lot they don’t know about Z, it does work in about 50% of patients, however unfortunately this is only temporary and there are definitely folks here who have used it 3,4 months etc. and then it quit working.If it were me I would definitely look at something else.
Best of luck to you.
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- October 28, 2012 at 3:42 pm
I would add I do agree also with POW. If you have evidence it is working elsewhere, this is an option. If it is failing everywhere I would move on. -
- October 28, 2012 at 3:42 pm
I would add I do agree also with POW. If you have evidence it is working elsewhere, this is an option. If it is failing everywhere I would move on. -
- October 28, 2012 at 3:42 pm
I would add I do agree also with POW. If you have evidence it is working elsewhere, this is an option. If it is failing everywhere I would move on. -
- October 31, 2012 at 2:15 am
husband has been on Z since April. some tumors in body did shrink. Had gamma knife on 3 brain mets in May. scans in June showed more brian tumors had 3 weeks of whole brain radiation in later june/July. Radiation side effects on my husband are brain damage & loss of hearing. Scans in Oct showed more tumors & excessive growth. Oncologist cannot offer any ore radiation at this time and feels he would have too much brain damage. Lost use of his left leg. Steriod has him walking again but with a limp. all of his oncologist state Zelboraf DOES NOT pass the blood brain barrier. Z has helped give my husband more time. not enough time but we will take all we can get. Best of luck with your treatment & decisions.
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- October 31, 2012 at 2:15 am
husband has been on Z since April. some tumors in body did shrink. Had gamma knife on 3 brain mets in May. scans in June showed more brian tumors had 3 weeks of whole brain radiation in later june/July. Radiation side effects on my husband are brain damage & loss of hearing. Scans in Oct showed more tumors & excessive growth. Oncologist cannot offer any ore radiation at this time and feels he would have too much brain damage. Lost use of his left leg. Steriod has him walking again but with a limp. all of his oncologist state Zelboraf DOES NOT pass the blood brain barrier. Z has helped give my husband more time. not enough time but we will take all we can get. Best of luck with your treatment & decisions.
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- October 31, 2012 at 2:15 am
husband has been on Z since April. some tumors in body did shrink. Had gamma knife on 3 brain mets in May. scans in June showed more brian tumors had 3 weeks of whole brain radiation in later june/July. Radiation side effects on my husband are brain damage & loss of hearing. Scans in Oct showed more tumors & excessive growth. Oncologist cannot offer any ore radiation at this time and feels he would have too much brain damage. Lost use of his left leg. Steriod has him walking again but with a limp. all of his oncologist state Zelboraf DOES NOT pass the blood brain barrier. Z has helped give my husband more time. not enough time but we will take all we can get. Best of luck with your treatment & decisions.
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- October 31, 2012 at 10:59 am
TwoLucky, Don't even have the first cup of coffee in me this morning as I read your note. I'm so very sorry at the same time I'm grateful that you took the time to share your story. We actually have an appt. with the radiologist this afternoon, making it clear to oncologist's office that it's a consultation to see what he has to say. In other words, you've shared your story just in the nick of time, as your husband's results are exactly what mine is worried about. I can't help but wonder if the makers THOUGHT Z passes the blood brain barrier, but have since come to the conclusion it does not. Prayers heading for you and yours, TwoLucky, and many many thanks.
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- October 31, 2012 at 10:59 am
TwoLucky, Don't even have the first cup of coffee in me this morning as I read your note. I'm so very sorry at the same time I'm grateful that you took the time to share your story. We actually have an appt. with the radiologist this afternoon, making it clear to oncologist's office that it's a consultation to see what he has to say. In other words, you've shared your story just in the nick of time, as your husband's results are exactly what mine is worried about. I can't help but wonder if the makers THOUGHT Z passes the blood brain barrier, but have since come to the conclusion it does not. Prayers heading for you and yours, TwoLucky, and many many thanks.
-
- October 31, 2012 at 10:59 am
TwoLucky, Don't even have the first cup of coffee in me this morning as I read your note. I'm so very sorry at the same time I'm grateful that you took the time to share your story. We actually have an appt. with the radiologist this afternoon, making it clear to oncologist's office that it's a consultation to see what he has to say. In other words, you've shared your story just in the nick of time, as your husband's results are exactly what mine is worried about. I can't help but wonder if the makers THOUGHT Z passes the blood brain barrier, but have since come to the conclusion it does not. Prayers heading for you and yours, TwoLucky, and many many thanks.
-
- October 28, 2012 at 3:23 pm
I had response in my brain and heart at 2 and 4 month scans. There is a lot they don’t know about Z, it does work in about 50% of patients, however unfortunately this is only temporary and there are definitely folks here who have used it 3,4 months etc. and then it quit working.If it were me I would definitely look at something else.
Best of luck to you.
-
- October 28, 2012 at 3:23 pm
I had response in my brain and heart at 2 and 4 month scans. There is a lot they don’t know about Z, it does work in about 50% of patients, however unfortunately this is only temporary and there are definitely folks here who have used it 3,4 months etc. and then it quit working.If it were me I would definitely look at something else.
Best of luck to you.
-
- October 31, 2012 at 6:04 pm
Ugh. Spoke too soon. Been off Zel 4 weeks. Brain was all clear 8 wks ago. Now have earlier brain met returned at 6mm and a new brain met 4mm. No other scans so I don’t know what else is going on. Ugh. Hate melanoma!! -
- November 1, 2012 at 8:58 pm
Oh, no. What is going on with these brain mets? I know some people write that their oncologists told them Z doesn't penetrate the BBB, but I have that very question written down in my notebook and the answer was a very positive "Yes, it does."
I hope you'll be able to find out what else is going on very soon. I hate melanoma, too.
{{{{}}}}
Caretaker
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- November 1, 2012 at 8:58 pm
Oh, no. What is going on with these brain mets? I know some people write that their oncologists told them Z doesn't penetrate the BBB, but I have that very question written down in my notebook and the answer was a very positive "Yes, it does."
I hope you'll be able to find out what else is going on very soon. I hate melanoma, too.
{{{{}}}}
Caretaker
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- November 1, 2012 at 8:58 pm
Oh, no. What is going on with these brain mets? I know some people write that their oncologists told them Z doesn't penetrate the BBB, but I have that very question written down in my notebook and the answer was a very positive "Yes, it does."
I hope you'll be able to find out what else is going on very soon. I hate melanoma, too.
{{{{}}}}
Caretaker
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- October 31, 2012 at 6:04 pm
Ugh. Spoke too soon. Been off Zel 4 weeks. Brain was all clear 8 wks ago. Now have earlier brain met returned at 6mm and a new brain met 4mm. No other scans so I don’t know what else is going on. Ugh. Hate melanoma!! -
- October 31, 2012 at 6:04 pm
Ugh. Spoke too soon. Been off Zel 4 weeks. Brain was all clear 8 wks ago. Now have earlier brain met returned at 6mm and a new brain met 4mm. No other scans so I don’t know what else is going on. Ugh. Hate melanoma!! -
- October 28, 2012 at 11:51 am
Thanks so much for sharing your experience w/ Z. So happy to learn that it helped with your brain met! Do you recall how long you had been taking it when it worked? (MRIs showed that one tumor was shrinking and the other hadn't gotten larger after 2 months. This was not the cause of the memory probelms we wawnted to hear.
All very best to you…stay strong,
Caretaker
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- October 28, 2012 at 12:44 am
I am so sorry that this is happening. I hate melanoma. My understanding from my oncologist is that once Zelboraf fails (quits working) then you need to look at different options. On average, it works only 7 months, so that means half of the people will be less than 7 months and half more than 7 months. I did have Zel resolve one small (4 mm) area in my brain. -
- October 28, 2012 at 12:44 am
I am so sorry that this is happening. I hate melanoma. My understanding from my oncologist is that once Zelboraf fails (quits working) then you need to look at different options. On average, it works only 7 months, so that means half of the people will be less than 7 months and half more than 7 months. I did have Zel resolve one small (4 mm) area in my brain.
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