› Forums › General Melanoma Community › Typical response time for BRAF + MEK?
- This topic has 30 replies, 6 voices, and was last updated 8 years, 10 months ago by
affguy.
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- February 6, 2014 at 11:54 pm
My Dad had a large ulcerated melanoma tumor removed from his trunk (ribs below armpit) in the summer of 2012 and began interferon treatments that went through May of 2013 (Three 1-month cycles separated by 2-month breaks). Everything looked clear until recently, with blood appearing in his urine in November and a rather shocking explosion of new, black moles (47 between early December and January 16). In looking for the cause of the blood, a CT scan showed spots on his liver a couple of weeks ago. A PET scan last week showed mets to essentially his entire spine and many other bones too, plus overwhelming involvement of his liver (not large tumors, but too many to operate), and his spleen.
We're now waiting on insurance approval for the dabrafenib and trametinib combination which will hopefully allow him to start treatment the week after next. The response rate for that combination looks promising, but I'm wondering how long it takes to know whether it's working or not. My hope is that it's something that starts working quickly and obviously, such that if he's in the minority for whom it doesn't work, he could get started on any other options in short order. Of course I'm not sure what further options would exist at that point besides ipilimumab. He has told us that he has no interest in revisiting the side effects he experienced with his interferon treatments.
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- February 7, 2014 at 3:35 am
Hi,
I posted the same question when I was put on the BRAF/MEK combo almost 2 months ago. I got a response from another patient saying they had an obvious response within the first week. For me, I think it took about a week before I started to notice a difference, but once I did improvement came quickly. I had a lot (close to 30 subcutaneous mets, so it was easy for me to track, but I also had many mets in my abdomen and chest (some of which had gotten quite large) and at least one in my spine. Prior to starting the combo I had been having bouts of severe back pain, and some other symptoms. I just recently had to admit that I didn't know how bad things had gotten/how bad I felt until i started to feel so much better with the combo. Another note- I have brain mets and this combo does help control brain disease as well should that be a concern.
Aside from the tumors I could feel under my skin shrinking the back pain dissapeared and the other symptoms I was having also subsided. So long story short if they work you should notice improvement quickly, though they didn't want me to have a scan for about a month after starting- of course had symptoms gotten worse or the skin tumors gotten bigger a scan would have happened sooner.
Regarding side effects- they come with a long list and I'm guessing your dad will have to go through the same counceling about them that I did- it makes them sound terrifying and kind of horrible. I have to report however that after almost 2 months I have no noticable side effects except that my skin is extra dry but it's hard to tell if that's just our winter this year or the medications. Either way it's a walk in the park compared to interferon (which I also did, then IL2, then Yervoy- none of which are easy). Others have reported some fever, or skin rash, or some of the other possible side effects, but they all say they're pretty mild and easily treated with creams or over the counter medications.
One last thing to note is that it forces you to be quite regimented with your meals as they have to be taken on an empty stomach. I find that part a bit tedious, but I guess it's a small price to pay. Also, the Mekinist has to be refridgerated, which can be tedious for traveling.
Good luck to you and your dad!
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- February 7, 2014 at 9:55 pm
I have been experiencing nausea /uneasy stomach since I started a week ago. Do you think it's bc I haven't been strict enough about the empty stomach rule? What is that for if you know?
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- February 7, 2014 at 9:55 pm
I have been experiencing nausea /uneasy stomach since I started a week ago. Do you think it's bc I haven't been strict enough about the empty stomach rule? What is that for if you know?
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- February 7, 2014 at 9:55 pm
I have been experiencing nausea /uneasy stomach since I started a week ago. Do you think it's bc I haven't been strict enough about the empty stomach rule? What is that for if you know?
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- February 7, 2014 at 3:35 am
Hi,
I posted the same question when I was put on the BRAF/MEK combo almost 2 months ago. I got a response from another patient saying they had an obvious response within the first week. For me, I think it took about a week before I started to notice a difference, but once I did improvement came quickly. I had a lot (close to 30 subcutaneous mets, so it was easy for me to track, but I also had many mets in my abdomen and chest (some of which had gotten quite large) and at least one in my spine. Prior to starting the combo I had been having bouts of severe back pain, and some other symptoms. I just recently had to admit that I didn't know how bad things had gotten/how bad I felt until i started to feel so much better with the combo. Another note- I have brain mets and this combo does help control brain disease as well should that be a concern.
Aside from the tumors I could feel under my skin shrinking the back pain dissapeared and the other symptoms I was having also subsided. So long story short if they work you should notice improvement quickly, though they didn't want me to have a scan for about a month after starting- of course had symptoms gotten worse or the skin tumors gotten bigger a scan would have happened sooner.
Regarding side effects- they come with a long list and I'm guessing your dad will have to go through the same counceling about them that I did- it makes them sound terrifying and kind of horrible. I have to report however that after almost 2 months I have no noticable side effects except that my skin is extra dry but it's hard to tell if that's just our winter this year or the medications. Either way it's a walk in the park compared to interferon (which I also did, then IL2, then Yervoy- none of which are easy). Others have reported some fever, or skin rash, or some of the other possible side effects, but they all say they're pretty mild and easily treated with creams or over the counter medications.
One last thing to note is that it forces you to be quite regimented with your meals as they have to be taken on an empty stomach. I find that part a bit tedious, but I guess it's a small price to pay. Also, the Mekinist has to be refridgerated, which can be tedious for traveling.
Good luck to you and your dad!
-
- February 7, 2014 at 3:35 am
Hi,
I posted the same question when I was put on the BRAF/MEK combo almost 2 months ago. I got a response from another patient saying they had an obvious response within the first week. For me, I think it took about a week before I started to notice a difference, but once I did improvement came quickly. I had a lot (close to 30 subcutaneous mets, so it was easy for me to track, but I also had many mets in my abdomen and chest (some of which had gotten quite large) and at least one in my spine. Prior to starting the combo I had been having bouts of severe back pain, and some other symptoms. I just recently had to admit that I didn't know how bad things had gotten/how bad I felt until i started to feel so much better with the combo. Another note- I have brain mets and this combo does help control brain disease as well should that be a concern.
Aside from the tumors I could feel under my skin shrinking the back pain dissapeared and the other symptoms I was having also subsided. So long story short if they work you should notice improvement quickly, though they didn't want me to have a scan for about a month after starting- of course had symptoms gotten worse or the skin tumors gotten bigger a scan would have happened sooner.
Regarding side effects- they come with a long list and I'm guessing your dad will have to go through the same counceling about them that I did- it makes them sound terrifying and kind of horrible. I have to report however that after almost 2 months I have no noticable side effects except that my skin is extra dry but it's hard to tell if that's just our winter this year or the medications. Either way it's a walk in the park compared to interferon (which I also did, then IL2, then Yervoy- none of which are easy). Others have reported some fever, or skin rash, or some of the other possible side effects, but they all say they're pretty mild and easily treated with creams or over the counter medications.
One last thing to note is that it forces you to be quite regimented with your meals as they have to be taken on an empty stomach. I find that part a bit tedious, but I guess it's a small price to pay. Also, the Mekinist has to be refridgerated, which can be tedious for traveling.
Good luck to you and your dad!
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- February 7, 2014 at 8:36 am
Most positive responders I have heard about begining experiencing change in one to two weeks.
If it does not provide a positve response there are other things to look at. Among the first in the
Immunotherapy line are IL-2 with Only short term bad negative side effects (like for a week at a time) possible positive effect, – a posible cure, or Ipi -Slower to respond, may have less or more long term negative side effects thatn IL-2, and PD-1 which is expected to gain FDA approval within the next six months. I will email you a rough list of other things in the pipeline that may or may not be things that will be applicable to your father. I will also be glad to communicate with you whenever possible. -
- February 7, 2014 at 8:36 am
Most positive responders I have heard about begining experiencing change in one to two weeks.
If it does not provide a positve response there are other things to look at. Among the first in the
Immunotherapy line are IL-2 with Only short term bad negative side effects (like for a week at a time) possible positive effect, – a posible cure, or Ipi -Slower to respond, may have less or more long term negative side effects thatn IL-2, and PD-1 which is expected to gain FDA approval within the next six months. I will email you a rough list of other things in the pipeline that may or may not be things that will be applicable to your father. I will also be glad to communicate with you whenever possible. -
- February 7, 2014 at 8:36 am
Most positive responders I have heard about begining experiencing change in one to two weeks.
If it does not provide a positve response there are other things to look at. Among the first in the
Immunotherapy line are IL-2 with Only short term bad negative side effects (like for a week at a time) possible positive effect, – a posible cure, or Ipi -Slower to respond, may have less or more long term negative side effects thatn IL-2, and PD-1 which is expected to gain FDA approval within the next six months. I will email you a rough list of other things in the pipeline that may or may not be things that will be applicable to your father. I will also be glad to communicate with you whenever possible. -
- February 7, 2014 at 9:01 am
I echo the responses you've received. You can view my prior posts. I started with a heavy tumor burden, particularly in my liver. The GSK combo acted very quickly–noticeable differences within 3 days or so–but give it at least a week as others have noted.
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- February 7, 2014 at 9:01 am
I echo the responses you've received. You can view my prior posts. I started with a heavy tumor burden, particularly in my liver. The GSK combo acted very quickly–noticeable differences within 3 days or so–but give it at least a week as others have noted.
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- February 7, 2014 at 9:01 am
I echo the responses you've received. You can view my prior posts. I started with a heavy tumor burden, particularly in my liver. The GSK combo acted very quickly–noticeable differences within 3 days or so–but give it at least a week as others have noted.
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- February 7, 2014 at 9:52 pm
I had a very large tumor in my lungs that was causing me to cough up blood and kept me up all night coughing. It was horrible. I started taking zelboraf and about 3 days in lost the cough. Such a relief. I took Z for about 4 months and just switched last week to the mek/braf combo for the better side effects. I hope it keeps working just as well.
pretty amazing drugs. Good lunch to your dad.
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- February 7, 2014 at 9:52 pm
I had a very large tumor in my lungs that was causing me to cough up blood and kept me up all night coughing. It was horrible. I started taking zelboraf and about 3 days in lost the cough. Such a relief. I took Z for about 4 months and just switched last week to the mek/braf combo for the better side effects. I hope it keeps working just as well.
pretty amazing drugs. Good lunch to your dad.
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- February 7, 2014 at 9:52 pm
I had a very large tumor in my lungs that was causing me to cough up blood and kept me up all night coughing. It was horrible. I started taking zelboraf and about 3 days in lost the cough. Such a relief. I took Z for about 4 months and just switched last week to the mek/braf combo for the better side effects. I hope it keeps working just as well.
pretty amazing drugs. Good lunch to your dad.
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- May 4, 2015 at 8:42 pm
Checking in after over a year away, all of which has been great. It took my dad nearly 3 weeks to respond to the dabrafenib + trametinib combo, but once it started, the change was dramatic. Much of his strength returning and the mets to his liver and spleen shrank significantly. In fact, when he hit the one year mark of treatement this past February, his doctor suggested they might go to a less frequent checkup interval, e.g. 6 months unless something changed. Last week something changed, as my mom noticed new black growths on his throat and one shoulder. He's seeing his doctor this afternoon, and we have our fingers crossed for another option that can provide a similarly pronounced and durable response with similarly mild side effects.
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- May 4, 2015 at 8:42 pm
Checking in after over a year away, all of which has been great. It took my dad nearly 3 weeks to respond to the dabrafenib + trametinib combo, but once it started, the change was dramatic. Much of his strength returning and the mets to his liver and spleen shrank significantly. In fact, when he hit the one year mark of treatement this past February, his doctor suggested they might go to a less frequent checkup interval, e.g. 6 months unless something changed. Last week something changed, as my mom noticed new black growths on his throat and one shoulder. He's seeing his doctor this afternoon, and we have our fingers crossed for another option that can provide a similarly pronounced and durable response with similarly mild side effects.
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- May 4, 2015 at 8:42 pm
Checking in after over a year away, all of which has been great. It took my dad nearly 3 weeks to respond to the dabrafenib + trametinib combo, but once it started, the change was dramatic. Much of his strength returning and the mets to his liver and spleen shrank significantly. In fact, when he hit the one year mark of treatement this past February, his doctor suggested they might go to a less frequent checkup interval, e.g. 6 months unless something changed. Last week something changed, as my mom noticed new black growths on his throat and one shoulder. He's seeing his doctor this afternoon, and we have our fingers crossed for another option that can provide a similarly pronounced and durable response with similarly mild side effects.
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- May 5, 2015 at 3:33 pm
Not a lot to report from yesterday's doctor appointment. I had thought my mom just made a type-o when texting me about his new growths, but it turns out that one of them is *in* his throat, not on it. His previously existing tumors remain shrunken to a size much smaller than before he started his current drug regimen, so they want to keep him on it for now. He's meeting with a surgeon tomorrow to discuss having the growth in his throat removed. Without further information, my guess as to what's going on would be that the new growths are likely squamous cell carcinomas? Or could they represent a mutation of the melanoma that does not respond to BRAF inhibitors, while the previously existing mets remain unmutated?
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- June 22, 2015 at 10:47 pm
Just another update, this one not so good.
My Dad had surgery in late May to remove tumors in his throat and on his shoulder, and both proved to be melanoma, as expected. The tumor on his shoulder grew from pencil eraser size to the diameter of a 50 cent piece in less than a month. He was healing well and seemed to be in good condition till a week ago, when he suddenly became incredibly fatigued, (sleeping 22+ hours per day since then) and lost his appetite. He was also running a fever, and when it got above 102 on Thursday my Mom took him to the ER where they did some imagining and told us that he had numerous masses in his brain. They referred him to oncology at that point (his melanoma specialist is still out of country), but also indicated the cough he can't seem to shake is likely lung mets. He'll be getting some imaging and seeing a neurologist tomorrow. His symptoms really concern us, as they seem to suggest that time is of the essence and may be very short.
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- June 22, 2015 at 10:47 pm
Just another update, this one not so good.
My Dad had surgery in late May to remove tumors in his throat and on his shoulder, and both proved to be melanoma, as expected. The tumor on his shoulder grew from pencil eraser size to the diameter of a 50 cent piece in less than a month. He was healing well and seemed to be in good condition till a week ago, when he suddenly became incredibly fatigued, (sleeping 22+ hours per day since then) and lost his appetite. He was also running a fever, and when it got above 102 on Thursday my Mom took him to the ER where they did some imagining and told us that he had numerous masses in his brain. They referred him to oncology at that point (his melanoma specialist is still out of country), but also indicated the cough he can't seem to shake is likely lung mets. He'll be getting some imaging and seeing a neurologist tomorrow. His symptoms really concern us, as they seem to suggest that time is of the essence and may be very short.
-
- June 22, 2015 at 10:47 pm
Just another update, this one not so good.
My Dad had surgery in late May to remove tumors in his throat and on his shoulder, and both proved to be melanoma, as expected. The tumor on his shoulder grew from pencil eraser size to the diameter of a 50 cent piece in less than a month. He was healing well and seemed to be in good condition till a week ago, when he suddenly became incredibly fatigued, (sleeping 22+ hours per day since then) and lost his appetite. He was also running a fever, and when it got above 102 on Thursday my Mom took him to the ER where they did some imagining and told us that he had numerous masses in his brain. They referred him to oncology at that point (his melanoma specialist is still out of country), but also indicated the cough he can't seem to shake is likely lung mets. He'll be getting some imaging and seeing a neurologist tomorrow. His symptoms really concern us, as they seem to suggest that time is of the essence and may be very short.
-
- May 5, 2015 at 3:33 pm
Not a lot to report from yesterday's doctor appointment. I had thought my mom just made a type-o when texting me about his new growths, but it turns out that one of them is *in* his throat, not on it. His previously existing tumors remain shrunken to a size much smaller than before he started his current drug regimen, so they want to keep him on it for now. He's meeting with a surgeon tomorrow to discuss having the growth in his throat removed. Without further information, my guess as to what's going on would be that the new growths are likely squamous cell carcinomas? Or could they represent a mutation of the melanoma that does not respond to BRAF inhibitors, while the previously existing mets remain unmutated?
-
- May 5, 2015 at 3:33 pm
Not a lot to report from yesterday's doctor appointment. I had thought my mom just made a type-o when texting me about his new growths, but it turns out that one of them is *in* his throat, not on it. His previously existing tumors remain shrunken to a size much smaller than before he started his current drug regimen, so they want to keep him on it for now. He's meeting with a surgeon tomorrow to discuss having the growth in his throat removed. Without further information, my guess as to what's going on would be that the new growths are likely squamous cell carcinomas? Or could they represent a mutation of the melanoma that does not respond to BRAF inhibitors, while the previously existing mets remain unmutated?
Tagged: cutaneous melanoma
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