› Forums › General Melanoma Community › brain mets and wbr
- This topic has 9 replies, 2 voices, and was last updated 9 years, 11 months ago by ecc26.
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- May 19, 2014 at 5:27 pm
Just been told that my brain mets have got worse and that need wrbt. I am currently on vem only. Just wondered who had had it and been any effects. Also how successful has it been for people?I
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- May 20, 2014 at 1:03 pm
I had WBR about a year ago for 7 mets plus possible leptomeningeal disease. It's a little hard to pick out what side effects came from which therapy since I was also started on Yervoy at the same time, but the WBR really wasn't that bad, I didn't think. Once they got all the measurements and figured out the setup, it only took about 10-15 min per day for 3 weeks (some people only do 2 weeks). I scheduled my appointments for first thing in the morning and was still able to get to work across town (not a large city) by 8:45 or so. The treatments don't hurt, you just have to lie on a table for a few min. Most of the side effects are cumulative, so I didn't notice anything at all for 2 weeks.
At the beginning of the third week all my hair fell out. It took 2-3 days for all of it to come out, but I had my head shaved down to 1/4 inch after it started beause I couldn't stand to have gobs of long hair falling everywhere (especially in the shower). Some people shave their heads before it starts so they dont' have to deal with it as much. It took a good 6 months before it really started growing again, but has come back really well. Late in the third week my ear canals really started to hurt- they got burned (like a sunburn) and it took close to a month before they really felt normal again. My radiation oncologist gave me some cream to use that helped a lot. It made sleeping dificult. Aside from that I did have some nausea during the third week of treatment that lasted for about a week or 2 after WBR ended, but as I said, I'm not sure if that was from the WBR or Yervoy. Since it didn't continue with additional Yervoy infusions I think it was likely due to the radiation, but I was prescribed an anti-emetic that worked well and I continued to work. Some fatigue hit after the third week, again some of that could have been attributed to Yervoy, I'm not sure. Since that didn't ease up until a few weeks after my last Yervoy infusion, I'm tempted to blame the drug, at least in part. Other than that, I really didn't notice anything for side effects. As far as the long term memory effects, etc that are a risk- my doctor put me on an alzheimer's medication for 6 months to help combat that. I didn't notice anything while I was on it. I came off in December and noticed a little downturn in my ability to choose words when I was tired. This has improved dramatically in the last couple of months.
For me, WBR was successful- no more leptomeningial anything (so far) and all of the 7 mets that were visible dissapeared (granted they were all around 5mm or less, so very small). None of them have returned. Unfortunately in January I had 4 completely new mets (2 of which were treated with Gamma Knife) and just yesterday I treated 9 additional, again completely new, mets. All of the new mets have been in locations other than the original 7 that were treated with WBR. So yes, WBR was a success, but I have had to stay very vigillant as my overall disease (body and brain) is not well controlled.
Good Luck to you
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- May 20, 2014 at 4:27 pm
Thank you for your reply I am very grateful. Can you tell me how are they going to treat your new mets if you don’t mind me asking? -
- May 21, 2014 at 1:09 pm
All of my new mets have been treated with Gamma Knife (SRS), which is a targeted radiation therapy. It's a bit unpleasant as they have to literally screw a frame to your skull, but they also give you a good amount of pain killers and some sedation so it's not so bad. The nice thing is that it's done in a few hours. For the 9 mets I had treated on Monday I checked into the center at 6:30am, I was second in line, so I waited for a while, before I went in for my treatment, but we were out and on our way home by about 2 in the afternoon. I had thought that it would be too many to do all at once, but I guess it has more to do with total mass than numbers, so since mine were so little it wasn't an issue to do all of them. The center I go to is over 3 hrs away, so it's not the most convenient, but it's the closest place I can get the targeted therapy and you can (or should) only have WBR once. They told me that by this time next year they'll have a newer machine that uses a plastic mask instead of the frame so nothing gets screwed to your head. I hope I can keep my head clear at least long enought for that to happen ๐
I assume you were asking about the brain mets and not the dozens of other mets I have, which will be treated either through one of the PD-1 expanded access programs or possibly by ACT, if they'll let me in to the trial. Still doing some research to figure out which one makes more sense right now. I'm currently on the BRAF/MEK combo and have been since mid December 2013, but with the new brain mets and some evidence from my CT a couple weeks ago it appears that that combo is failing after just 5 months, hence the search for something new. I've managed to make it nearly a year and a half as a stage 4 patient, and I'm greatful, but I've been burning through therapies left and right and starting to get nervous, but there's no way I can give up. You shouldn't either.
Good luck
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- May 21, 2014 at 1:09 pm
All of my new mets have been treated with Gamma Knife (SRS), which is a targeted radiation therapy. It's a bit unpleasant as they have to literally screw a frame to your skull, but they also give you a good amount of pain killers and some sedation so it's not so bad. The nice thing is that it's done in a few hours. For the 9 mets I had treated on Monday I checked into the center at 6:30am, I was second in line, so I waited for a while, before I went in for my treatment, but we were out and on our way home by about 2 in the afternoon. I had thought that it would be too many to do all at once, but I guess it has more to do with total mass than numbers, so since mine were so little it wasn't an issue to do all of them. The center I go to is over 3 hrs away, so it's not the most convenient, but it's the closest place I can get the targeted therapy and you can (or should) only have WBR once. They told me that by this time next year they'll have a newer machine that uses a plastic mask instead of the frame so nothing gets screwed to your head. I hope I can keep my head clear at least long enought for that to happen ๐
I assume you were asking about the brain mets and not the dozens of other mets I have, which will be treated either through one of the PD-1 expanded access programs or possibly by ACT, if they'll let me in to the trial. Still doing some research to figure out which one makes more sense right now. I'm currently on the BRAF/MEK combo and have been since mid December 2013, but with the new brain mets and some evidence from my CT a couple weeks ago it appears that that combo is failing after just 5 months, hence the search for something new. I've managed to make it nearly a year and a half as a stage 4 patient, and I'm greatful, but I've been burning through therapies left and right and starting to get nervous, but there's no way I can give up. You shouldn't either.
Good luck
-
- May 21, 2014 at 1:09 pm
All of my new mets have been treated with Gamma Knife (SRS), which is a targeted radiation therapy. It's a bit unpleasant as they have to literally screw a frame to your skull, but they also give you a good amount of pain killers and some sedation so it's not so bad. The nice thing is that it's done in a few hours. For the 9 mets I had treated on Monday I checked into the center at 6:30am, I was second in line, so I waited for a while, before I went in for my treatment, but we were out and on our way home by about 2 in the afternoon. I had thought that it would be too many to do all at once, but I guess it has more to do with total mass than numbers, so since mine were so little it wasn't an issue to do all of them. The center I go to is over 3 hrs away, so it's not the most convenient, but it's the closest place I can get the targeted therapy and you can (or should) only have WBR once. They told me that by this time next year they'll have a newer machine that uses a plastic mask instead of the frame so nothing gets screwed to your head. I hope I can keep my head clear at least long enought for that to happen ๐
I assume you were asking about the brain mets and not the dozens of other mets I have, which will be treated either through one of the PD-1 expanded access programs or possibly by ACT, if they'll let me in to the trial. Still doing some research to figure out which one makes more sense right now. I'm currently on the BRAF/MEK combo and have been since mid December 2013, but with the new brain mets and some evidence from my CT a couple weeks ago it appears that that combo is failing after just 5 months, hence the search for something new. I've managed to make it nearly a year and a half as a stage 4 patient, and I'm greatful, but I've been burning through therapies left and right and starting to get nervous, but there's no way I can give up. You shouldn't either.
Good luck
-
- May 20, 2014 at 4:27 pm
Thank you for your reply I am very grateful. Can you tell me how are they going to treat your new mets if you don’t mind me asking? -
- May 20, 2014 at 4:27 pm
Thank you for your reply I am very grateful. Can you tell me how are they going to treat your new mets if you don’t mind me asking?
-
- May 20, 2014 at 1:03 pm
I had WBR about a year ago for 7 mets plus possible leptomeningeal disease. It's a little hard to pick out what side effects came from which therapy since I was also started on Yervoy at the same time, but the WBR really wasn't that bad, I didn't think. Once they got all the measurements and figured out the setup, it only took about 10-15 min per day for 3 weeks (some people only do 2 weeks). I scheduled my appointments for first thing in the morning and was still able to get to work across town (not a large city) by 8:45 or so. The treatments don't hurt, you just have to lie on a table for a few min. Most of the side effects are cumulative, so I didn't notice anything at all for 2 weeks.
At the beginning of the third week all my hair fell out. It took 2-3 days for all of it to come out, but I had my head shaved down to 1/4 inch after it started beause I couldn't stand to have gobs of long hair falling everywhere (especially in the shower). Some people shave their heads before it starts so they dont' have to deal with it as much. It took a good 6 months before it really started growing again, but has come back really well. Late in the third week my ear canals really started to hurt- they got burned (like a sunburn) and it took close to a month before they really felt normal again. My radiation oncologist gave me some cream to use that helped a lot. It made sleeping dificult. Aside from that I did have some nausea during the third week of treatment that lasted for about a week or 2 after WBR ended, but as I said, I'm not sure if that was from the WBR or Yervoy. Since it didn't continue with additional Yervoy infusions I think it was likely due to the radiation, but I was prescribed an anti-emetic that worked well and I continued to work. Some fatigue hit after the third week, again some of that could have been attributed to Yervoy, I'm not sure. Since that didn't ease up until a few weeks after my last Yervoy infusion, I'm tempted to blame the drug, at least in part. Other than that, I really didn't notice anything for side effects. As far as the long term memory effects, etc that are a risk- my doctor put me on an alzheimer's medication for 6 months to help combat that. I didn't notice anything while I was on it. I came off in December and noticed a little downturn in my ability to choose words when I was tired. This has improved dramatically in the last couple of months.
For me, WBR was successful- no more leptomeningial anything (so far) and all of the 7 mets that were visible dissapeared (granted they were all around 5mm or less, so very small). None of them have returned. Unfortunately in January I had 4 completely new mets (2 of which were treated with Gamma Knife) and just yesterday I treated 9 additional, again completely new, mets. All of the new mets have been in locations other than the original 7 that were treated with WBR. So yes, WBR was a success, but I have had to stay very vigillant as my overall disease (body and brain) is not well controlled.
Good Luck to you
-
- May 20, 2014 at 1:03 pm
I had WBR about a year ago for 7 mets plus possible leptomeningeal disease. It's a little hard to pick out what side effects came from which therapy since I was also started on Yervoy at the same time, but the WBR really wasn't that bad, I didn't think. Once they got all the measurements and figured out the setup, it only took about 10-15 min per day for 3 weeks (some people only do 2 weeks). I scheduled my appointments for first thing in the morning and was still able to get to work across town (not a large city) by 8:45 or so. The treatments don't hurt, you just have to lie on a table for a few min. Most of the side effects are cumulative, so I didn't notice anything at all for 2 weeks.
At the beginning of the third week all my hair fell out. It took 2-3 days for all of it to come out, but I had my head shaved down to 1/4 inch after it started beause I couldn't stand to have gobs of long hair falling everywhere (especially in the shower). Some people shave their heads before it starts so they dont' have to deal with it as much. It took a good 6 months before it really started growing again, but has come back really well. Late in the third week my ear canals really started to hurt- they got burned (like a sunburn) and it took close to a month before they really felt normal again. My radiation oncologist gave me some cream to use that helped a lot. It made sleeping dificult. Aside from that I did have some nausea during the third week of treatment that lasted for about a week or 2 after WBR ended, but as I said, I'm not sure if that was from the WBR or Yervoy. Since it didn't continue with additional Yervoy infusions I think it was likely due to the radiation, but I was prescribed an anti-emetic that worked well and I continued to work. Some fatigue hit after the third week, again some of that could have been attributed to Yervoy, I'm not sure. Since that didn't ease up until a few weeks after my last Yervoy infusion, I'm tempted to blame the drug, at least in part. Other than that, I really didn't notice anything for side effects. As far as the long term memory effects, etc that are a risk- my doctor put me on an alzheimer's medication for 6 months to help combat that. I didn't notice anything while I was on it. I came off in December and noticed a little downturn in my ability to choose words when I was tired. This has improved dramatically in the last couple of months.
For me, WBR was successful- no more leptomeningial anything (so far) and all of the 7 mets that were visible dissapeared (granted they were all around 5mm or less, so very small). None of them have returned. Unfortunately in January I had 4 completely new mets (2 of which were treated with Gamma Knife) and just yesterday I treated 9 additional, again completely new, mets. All of the new mets have been in locations other than the original 7 that were treated with WBR. So yes, WBR was a success, but I have had to stay very vigillant as my overall disease (body and brain) is not well controlled.
Good Luck to you
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