› Forums › General Melanoma Community › wbr
- This topic has 18 replies, 3 voices, and was last updated 9 years, 11 months ago by
Mat.
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- May 20, 2014 at 11:43 am
Can someone tell me whether they have had wbr and if was successful. Did there hair grow back?
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- May 20, 2014 at 12:34 pm
I had WBR just about a year ago (June 2013). At the time I had 7 brain mets and possible leptomeningial disease (hence the WBR instead of gamma knife or other SRS). I lost all my hair at the beginning of the thrid week (I did 3 weeks, but some people only do 2), and had some fatigue and nausea. Some of the fatigue and nasea may have been do to the Ipilimumab (Yervoy) I had started at the same time, so I'm not sure what side effect went with what therapy. My ear canals got burnt though (like a sunburn) and were really irritated for about a month. That made it hard to sleep. It took about 6 months to start really growing my hair back. At this point (almost a year later), I still have a relatively thin spot at the back of my head, but the rest has filled in nicely and is still coming in.
As far as it working- for me yes, it worked. I have not had any evidence of leptomeningial disease since and all of the 7 tumors essentially dissapeared. Keep in mind all 7 were about 5mm or less (very small). Unfortunately for me, I developed 4 new (completely new, not re-growth of old ones) late last fall (Nov or Dec). My doctors treated 2 of them in January with Gamma Knife (they're now dead), the other 2 were deemed too small to treat at the time. Then 2 weeks ago my MRI showed that the 2 untreated ones had grown and I again had 4 new ones (completely new locations from any I had previously). I had Gamma Knife again yesterday for those 6, plus 3 tiny ones they found with their machine that weren't visible on my local MRI. So yes, the WBR worked, but stay vigilant with MRI's because some of us will keep getting mets and you want to treat them as early as possible, while they're as small as possible.
One question I have is why is your doctor recommending WBR instead of something targeted like Gamma Knife? Typically WBR in melanoma patients is reserved for those with or with a concern of leptomeningeal disease, tumors in inaccessable locations (i.e. can't surgically remove them), or patients with too many mets or tumors that are too large to treat with Gamma Knife.
Good luck to you
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- May 20, 2014 at 12:34 pm
I had WBR just about a year ago (June 2013). At the time I had 7 brain mets and possible leptomeningial disease (hence the WBR instead of gamma knife or other SRS). I lost all my hair at the beginning of the thrid week (I did 3 weeks, but some people only do 2), and had some fatigue and nausea. Some of the fatigue and nasea may have been do to the Ipilimumab (Yervoy) I had started at the same time, so I'm not sure what side effect went with what therapy. My ear canals got burnt though (like a sunburn) and were really irritated for about a month. That made it hard to sleep. It took about 6 months to start really growing my hair back. At this point (almost a year later), I still have a relatively thin spot at the back of my head, but the rest has filled in nicely and is still coming in.
As far as it working- for me yes, it worked. I have not had any evidence of leptomeningial disease since and all of the 7 tumors essentially dissapeared. Keep in mind all 7 were about 5mm or less (very small). Unfortunately for me, I developed 4 new (completely new, not re-growth of old ones) late last fall (Nov or Dec). My doctors treated 2 of them in January with Gamma Knife (they're now dead), the other 2 were deemed too small to treat at the time. Then 2 weeks ago my MRI showed that the 2 untreated ones had grown and I again had 4 new ones (completely new locations from any I had previously). I had Gamma Knife again yesterday for those 6, plus 3 tiny ones they found with their machine that weren't visible on my local MRI. So yes, the WBR worked, but stay vigilant with MRI's because some of us will keep getting mets and you want to treat them as early as possible, while they're as small as possible.
One question I have is why is your doctor recommending WBR instead of something targeted like Gamma Knife? Typically WBR in melanoma patients is reserved for those with or with a concern of leptomeningeal disease, tumors in inaccessable locations (i.e. can't surgically remove them), or patients with too many mets or tumors that are too large to treat with Gamma Knife.
Good luck to you
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- May 20, 2014 at 12:43 pm
Thanks for your comment is was good to hear. I have been told that I cannot have srs as my mets are scattered over the brain so it would not work. I am sorry to hear that some of yours have come back though. I really appreciate your response cos do not know anyone else who has had the treatment x -
- May 20, 2014 at 12:43 pm
Thanks for your comment is was good to hear. I have been told that I cannot have srs as my mets are scattered over the brain so it would not work. I am sorry to hear that some of yours have come back though. I really appreciate your response cos do not know anyone else who has had the treatment x -
- May 20, 2014 at 12:43 pm
Thanks for your comment is was good to hear. I have been told that I cannot have srs as my mets are scattered over the brain so it would not work. I am sorry to hear that some of yours have come back though. I really appreciate your response cos do not know anyone else who has had the treatment x -
- May 20, 2014 at 12:43 pm
Thanks for your comment is was good to hear. I have been told that I cannot have srs as my mets are scattered over the brain so it would not work. I am sorry to hear that some of yours have come back though. I really appreciate your response cos do not know anyone else who has had the treatment x -
- May 20, 2014 at 12:43 pm
Thanks for your comment is was good to hear. I have been told that I cannot have srs as my mets are scattered over the brain so it would not work. I am sorry to hear that some of yours have come back though. I really appreciate your response cos do not know anyone else who has had the treatment x -
- May 20, 2014 at 12:43 pm
Thanks for your comment is was good to hear. I have been told that I cannot have srs as my mets are scattered over the brain so it would not work. I am sorry to hear that some of yours have come back though. I really appreciate your response cos do not know anyone else who has had the treatment x -
- May 21, 2014 at 12:49 pm
Thanks Mat,
We'll see if they'll even let me in. Although now it looks like BMS has one too, so maybe between the 2 I'll get some luck. I don't have the greatest track record, but I have to try. I'm actually hoping to perhaps get into an ACT trial, but again, don't know if they'd take me.
I've been following you, too. I don't post very often, but I have been paying attention.
I wish you the best of luck!
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- May 21, 2014 at 12:49 pm
Thanks Mat,
We'll see if they'll even let me in. Although now it looks like BMS has one too, so maybe between the 2 I'll get some luck. I don't have the greatest track record, but I have to try. I'm actually hoping to perhaps get into an ACT trial, but again, don't know if they'd take me.
I've been following you, too. I don't post very often, but I have been paying attention.
I wish you the best of luck!
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- May 21, 2014 at 4:15 pm
Thanks Eva. Although you don't seem to read about it much here or on MIF, I think ACT/TIL is very promising (the NIH stats are similar to PD-1 (with a longer track record) recognizing that they are selective, etc.). I pursued it at the NIH as an initial treatment, but ultimately my (then) heavy tumor burden kept me out. I continue to ask my doctor about whether I should pursue it ("not yet"). My recollection is that the NIH will allow up to 3 brain mets, but I haven't looked at the criteria in awhile. Separately, I recall seeing that Moffitt will be starting a trial combining TIL and PD-1, but I don't think that it is recruiting yet (and it may have stricter criteria).
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- May 21, 2014 at 4:15 pm
Thanks Eva. Although you don't seem to read about it much here or on MIF, I think ACT/TIL is very promising (the NIH stats are similar to PD-1 (with a longer track record) recognizing that they are selective, etc.). I pursued it at the NIH as an initial treatment, but ultimately my (then) heavy tumor burden kept me out. I continue to ask my doctor about whether I should pursue it ("not yet"). My recollection is that the NIH will allow up to 3 brain mets, but I haven't looked at the criteria in awhile. Separately, I recall seeing that Moffitt will be starting a trial combining TIL and PD-1, but I don't think that it is recruiting yet (and it may have stricter criteria).
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- May 21, 2014 at 4:15 pm
Thanks Eva. Although you don't seem to read about it much here or on MIF, I think ACT/TIL is very promising (the NIH stats are similar to PD-1 (with a longer track record) recognizing that they are selective, etc.). I pursued it at the NIH as an initial treatment, but ultimately my (then) heavy tumor burden kept me out. I continue to ask my doctor about whether I should pursue it ("not yet"). My recollection is that the NIH will allow up to 3 brain mets, but I haven't looked at the criteria in awhile. Separately, I recall seeing that Moffitt will be starting a trial combining TIL and PD-1, but I don't think that it is recruiting yet (and it may have stricter criteria).
-
- May 21, 2014 at 12:49 pm
Thanks Mat,
We'll see if they'll even let me in. Although now it looks like BMS has one too, so maybe between the 2 I'll get some luck. I don't have the greatest track record, but I have to try. I'm actually hoping to perhaps get into an ACT trial, but again, don't know if they'd take me.
I've been following you, too. I don't post very often, but I have been paying attention.
I wish you the best of luck!
-
- May 20, 2014 at 12:34 pm
I had WBR just about a year ago (June 2013). At the time I had 7 brain mets and possible leptomeningial disease (hence the WBR instead of gamma knife or other SRS). I lost all my hair at the beginning of the thrid week (I did 3 weeks, but some people only do 2), and had some fatigue and nausea. Some of the fatigue and nasea may have been do to the Ipilimumab (Yervoy) I had started at the same time, so I'm not sure what side effect went with what therapy. My ear canals got burnt though (like a sunburn) and were really irritated for about a month. That made it hard to sleep. It took about 6 months to start really growing my hair back. At this point (almost a year later), I still have a relatively thin spot at the back of my head, but the rest has filled in nicely and is still coming in.
As far as it working- for me yes, it worked. I have not had any evidence of leptomeningial disease since and all of the 7 tumors essentially dissapeared. Keep in mind all 7 were about 5mm or less (very small). Unfortunately for me, I developed 4 new (completely new, not re-growth of old ones) late last fall (Nov or Dec). My doctors treated 2 of them in January with Gamma Knife (they're now dead), the other 2 were deemed too small to treat at the time. Then 2 weeks ago my MRI showed that the 2 untreated ones had grown and I again had 4 new ones (completely new locations from any I had previously). I had Gamma Knife again yesterday for those 6, plus 3 tiny ones they found with their machine that weren't visible on my local MRI. So yes, the WBR worked, but stay vigilant with MRI's because some of us will keep getting mets and you want to treat them as early as possible, while they're as small as possible.
One question I have is why is your doctor recommending WBR instead of something targeted like Gamma Knife? Typically WBR in melanoma patients is reserved for those with or with a concern of leptomeningeal disease, tumors in inaccessable locations (i.e. can't surgically remove them), or patients with too many mets or tumors that are too large to treat with Gamma Knife.
Good luck to you
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