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stage IV melanoma-BRAF/MEK
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stage IV melanoma-BRAF/MEK

› Forums › General Melanoma Community › stage IV melanoma-BRAF/MEK

  • Post
    • February 23, 2014 at 1:34 am
    melfighter
    Participant

      Hi all, my husband was just diagnosed with stage iv Melanoma three weeks ago, with 14 lesions in his brain, in his lung, liver, bone, spine, it has spread every where in his body. He also has several bumps that just popped up on his back just this past week alone. He is in a lot of pain and is on Flantanal, and other pain meds to keep the pain somewhat manageable. 

      He is in good spirit and no symptoms so far other than his back pain and fatigue, since he is getting radiation (WBR) for the lesions in his brain.

      He just started his first dosage of BRAF/MEK today. I have been on this forum every day ever since he's been diagnosed and trying to figure out given his advanced stage even for stage IV, if there is hope for him.

    Viewing 8 reply threads
    • Replies
        • February 23, 2014 at 7:53 pm
        Fen
        Participant

          I am so sorry you're going through this.I don't have any information on this treatment,  I just wanted to tell you that the board is sometimes slow on the weekends.  If no one replies post again with a descriptive heading later in the week.  We are all familiar with the agony of diagnosis.

          While no one can tell you how this will play out, I can say that there are lots of Stage IV people on the board – some have been at that stage for years.   Are you getting treated by a melanoma specialist?  I hope you have some good support.    Keeping you both in my prayers.    

          Fen

          • February 23, 2014 at 7:53 pm
          Fen
          Participant

            I am so sorry you're going through this.I don't have any information on this treatment,  I just wanted to tell you that the board is sometimes slow on the weekends.  If no one replies post again with a descriptive heading later in the week.  We are all familiar with the agony of diagnosis.

            While no one can tell you how this will play out, I can say that there are lots of Stage IV people on the board – some have been at that stage for years.   Are you getting treated by a melanoma specialist?  I hope you have some good support.    Keeping you both in my prayers.    

            Fen

              • February 24, 2014 at 3:26 am
              melfighter
              Participant

                Thank you for the reply & your support. He is being treated at UCLA. Given the numbers of brain tumors, he so far has no neurological symptoms, so that is encouraging.  

                • February 24, 2014 at 3:26 am
                melfighter
                Participant

                  Thank you for the reply & your support. He is being treated at UCLA. Given the numbers of brain tumors, he so far has no neurological symptoms, so that is encouraging.  

                  • February 24, 2014 at 3:26 am
                  melfighter
                  Participant

                    Thank you for the reply & your support. He is being treated at UCLA. Given the numbers of brain tumors, he so far has no neurological symptoms, so that is encouraging.  

                  • February 23, 2014 at 7:53 pm
                  Fen
                  Participant

                    I am so sorry you're going through this.I don't have any information on this treatment,  I just wanted to tell you that the board is sometimes slow on the weekends.  If no one replies post again with a descriptive heading later in the week.  We are all familiar with the agony of diagnosis.

                    While no one can tell you how this will play out, I can say that there are lots of Stage IV people on the board – some have been at that stage for years.   Are you getting treated by a melanoma specialist?  I hope you have some good support.    Keeping you both in my prayers.    

                    Fen

                    • February 24, 2014 at 3:37 am
                    MattF
                    Participant

                      Hello

                      I too am Stage IV….live in los angles with my wife and are being treated at UCLA, (Westwood Hemotology/Oncology)

                      I started the BRAK/MEK combo back in Dec and saw visable shrinkage within a week.

                      My tumor burden is not as great as your husbands but i have seen a good response. 

                      Good luck. Feel free to drop me a mesg etc

                      Matt

                      • February 24, 2014 at 3:37 am
                      MattF
                      Participant

                        Hello

                        I too am Stage IV….live in los angles with my wife and are being treated at UCLA, (Westwood Hemotology/Oncology)

                        I started the BRAK/MEK combo back in Dec and saw visable shrinkage within a week.

                        My tumor burden is not as great as your husbands but i have seen a good response. 

                        Good luck. Feel free to drop me a mesg etc

                        Matt

                        • February 24, 2014 at 3:37 am
                        MattF
                        Participant

                          Hello

                          I too am Stage IV….live in los angles with my wife and are being treated at UCLA, (Westwood Hemotology/Oncology)

                          I started the BRAK/MEK combo back in Dec and saw visable shrinkage within a week.

                          My tumor burden is not as great as your husbands but i have seen a good response. 

                          Good luck. Feel free to drop me a mesg etc

                          Matt

                          • February 24, 2014 at 3:58 am
                          ecc26
                          Participant

                            Hello,

                            I'm very sorry you and your husband have been thrown into the terrible whirlwind of stage IV melanoma. I'm also a stage IV and while most of my mets are under the skin (subQ), I have or have had mets in my brain, lung, spine, and a large number of lymph nodes in my chest and abdomen. I've also been where you are where new ones seem to pop up daily and I know what you mean with the back pain- it's really incredibly debilitating. I've had over 30 subQ's and I'm not even sure how many internal lymph nodes, but the ones in my chest got big enough to put pressure on my heart. I've had Interferon, IL-2, WBR, Yervoy (with GM-CSF injections) and now having been disqalified from PD-1 trials for the second time due to brain mets I've been on the BRAF/MEK combo for just over 2 months. 

                            The good news with the combo: when it works, it works fast- I had very noticable improvement (in pain and the size of the tumors I could feel) within 2 weeks, others have said they saw results in just a few days. I had a recheck CT at one month all the body tumors (inside and out) had decreased by at least 50% if not more. That earned me a 3 month break from CT's which is a longer break than I've had in a while. It should work in the brain, which will help the effectiveness of the WBR. Most people have very few side effects, despite the very scary list of possible side effects you can read about and will likely be councelled on. I have had no noticable side effects in the 2 months I've been taking them. WBR on the other hand may leave him with some side effects (I had some significant fatigue, hair loss, some short lived nausea, and my ear canals got "burned" like a sunburn and were sore for a few weeks). 

                            The downside, which I'm sure you're aware of, is they can be somewhat unpredictable with regards to how long they will last. I think all of us who take these meds struggle a little with that. Because of this many of us wait to use these until we have progressed through other therapies, but there are many on this forum who, like your husband don't have the luxury of trying one of the immunotherapies first as they can take months to be effective. There's also others, like myself, who have run out of other options.

                            Right now, this combo can literally be a lifesaver. It can help knock things back to a level that will allow him to get one or more of the immunotherapies that can have longer lasting effects, or join a promising clinical trial if you choose to go that route. There are patients out there that have been on this combo (from trials before FDA approval) for over a year and the combo is still working. Melanoma is horrible and I'm pretty sure I'm not alone when I say I HATE it! But there's always hope. There's so much more available today than there was even just a couple of years ago when I was first diagnosed (2011, there was pretty much just IL-2 or clinical trial) and more therapies on the horizon.

                            Believe that this combo can work, because I'm here to say that it can. Believe it will get him through at least until you and he decide to do something different, because it has to.

                            Take a deep breath, one step at a time, and try to stay positive. Best of luck

                            -Eva

                              • February 24, 2014 at 4:38 am
                              melfighter
                              Participant

                                Thanks so much Eva for your detailed description, it made me feel better that maybe there is hope for him. I am so depressed today I haven't eaten anything, I have not felt hungry for many days now. I struggle with the question how long will BRAF/MEK work for him? 

                                I am glad the meds are working for you, and I hope they will work for both you & my husband for many many years to come.

                                • February 24, 2014 at 4:38 am
                                melfighter
                                Participant

                                  Thanks so much Eva for your detailed description, it made me feel better that maybe there is hope for him. I am so depressed today I haven't eaten anything, I have not felt hungry for many days now. I struggle with the question how long will BRAF/MEK work for him? 

                                  I am glad the meds are working for you, and I hope they will work for both you & my husband for many many years to come.

                                  • February 24, 2014 at 4:38 am
                                  melfighter
                                  Participant

                                    Thanks so much Eva for your detailed description, it made me feel better that maybe there is hope for him. I am so depressed today I haven't eaten anything, I have not felt hungry for many days now. I struggle with the question how long will BRAF/MEK work for him? 

                                    I am glad the meds are working for you, and I hope they will work for both you & my husband for many many years to come.

                                    • February 24, 2014 at 2:09 pm
                                    ecc26
                                    Participant

                                      I struggle with that question every day- will it be tomorrow? Next month? Next year? We all want to know, but there's just no way to know. For now, give the combo some time to work. Once things have settled down and you're both feeling a bit better/more normal and are ready, then begin to work with your doctors on a plan B- something that might be a little more long lasting. If this is his first therapy you have several options so you can get some information, think about it, maybe make some appointments and decide what is best for you and your family. Once he starts to feel better so will you. It'll always be at the back of your mind, but it won't be so all-consuming. 

                                      I'm 32 and a planner so this not knowing and just waiting gives me ulcers. I've been unable to work since my diagnosis because I've had to be in and out of hospitals so much I'm not reliable enough as an employee. At this point I'm stable enough, but am aprehensive about job searching and promising something I might not be able to deliver (of course I'd have to disclose the Melanoma uncertainty, which I hate- I'd really prefer to keep my medical problems to myself). I'm starting to figure out though that I can't wait for the melanoma to go away- I have to continue to live my life as if everything is going to be ok. I have to jump in and do what I can, when I can, for as long as I can, and just see how it goes. 

                                      You might also take a look in your area for support groups you and/or your husband can go to. You're being treated at UCLA, that's probably a good starting point. If they don't have any there they can probably help direct you to groups in the area. There aren't any melanoma specific groups in my area, but there are groups for patients and for spouses/caretakers. It can help to have others to talk to who are going through a similar experience. 

                                      good luck to you both and as others have said in their posts, feel free to message me 

                                      • February 24, 2014 at 2:09 pm
                                      ecc26
                                      Participant

                                        I struggle with that question every day- will it be tomorrow? Next month? Next year? We all want to know, but there's just no way to know. For now, give the combo some time to work. Once things have settled down and you're both feeling a bit better/more normal and are ready, then begin to work with your doctors on a plan B- something that might be a little more long lasting. If this is his first therapy you have several options so you can get some information, think about it, maybe make some appointments and decide what is best for you and your family. Once he starts to feel better so will you. It'll always be at the back of your mind, but it won't be so all-consuming. 

                                        I'm 32 and a planner so this not knowing and just waiting gives me ulcers. I've been unable to work since my diagnosis because I've had to be in and out of hospitals so much I'm not reliable enough as an employee. At this point I'm stable enough, but am aprehensive about job searching and promising something I might not be able to deliver (of course I'd have to disclose the Melanoma uncertainty, which I hate- I'd really prefer to keep my medical problems to myself). I'm starting to figure out though that I can't wait for the melanoma to go away- I have to continue to live my life as if everything is going to be ok. I have to jump in and do what I can, when I can, for as long as I can, and just see how it goes. 

                                        You might also take a look in your area for support groups you and/or your husband can go to. You're being treated at UCLA, that's probably a good starting point. If they don't have any there they can probably help direct you to groups in the area. There aren't any melanoma specific groups in my area, but there are groups for patients and for spouses/caretakers. It can help to have others to talk to who are going through a similar experience. 

                                        good luck to you both and as others have said in their posts, feel free to message me 

                                        • February 25, 2014 at 5:27 am
                                        melfighter
                                        Participant

                                          Thanks Eva, your message gives me a lot of comfort and helped me realized that others just like my husband are going through the same thing and we are not alone in not knowing what is going to happen.

                                          I am sorry that you are getting ulcers from worrying, I hope you will find relief soon from worrying too much.  I think you are right that we can't keep waiting around, we need to live life, keep moving forward. As I was driving today with my husband in the car, I realized it should be my happiness moment, a moment to treasure, since I don't know how long he will be sitting next to me in the car. It is focusing on the positives and it is the only way to live.

                                          He started his first dose of BRAF/MEK Sat around noon time and like a miracle, today all of the lumps that popped up on his back from last week have disappeared!! I simply can't believe it. I hope these medicines will continue to do wonders for him and hopefully will last for many many years to come.

                                          By the way, both of his ankles are swollen since Sat, he got checked out at UCLA today and came back negative for blood clots, whew!!, the nurse is unsure of the cause.  I wonder if anyone have similar experiences?

                                           

                                          • February 25, 2014 at 5:27 am
                                          melfighter
                                          Participant

                                            Thanks Eva, your message gives me a lot of comfort and helped me realized that others just like my husband are going through the same thing and we are not alone in not knowing what is going to happen.

                                            I am sorry that you are getting ulcers from worrying, I hope you will find relief soon from worrying too much.  I think you are right that we can't keep waiting around, we need to live life, keep moving forward. As I was driving today with my husband in the car, I realized it should be my happiness moment, a moment to treasure, since I don't know how long he will be sitting next to me in the car. It is focusing on the positives and it is the only way to live.

                                            He started his first dose of BRAF/MEK Sat around noon time and like a miracle, today all of the lumps that popped up on his back from last week have disappeared!! I simply can't believe it. I hope these medicines will continue to do wonders for him and hopefully will last for many many years to come.

                                            By the way, both of his ankles are swollen since Sat, he got checked out at UCLA today and came back negative for blood clots, whew!!, the nurse is unsure of the cause.  I wonder if anyone have similar experiences?

                                             

                                            • February 25, 2014 at 7:39 pm
                                            ecc26
                                            Participant

                                              I'm so glad it's working for him! If he doesn't already, I hope his pain subsides soona as well. I don't know what to tell you about the ankles, but it's good they ruled out blood clots. I would suggest maybe lymphedema, but if he hasn't had any surgeries it shouldn't be that. If it continues, maybe a PET scan (which covers the whole body) or some other imaging to look at his legs and maybe pelvic area? My guess is that since it's both ankles it's probably something at the pelvic level affecting drainage where vessels come together from both legs. Hopefully it will get better soon, but don't let it go too long without talking to a doctor again.

                                              If you'd like more input from people on this forum though, you should probably start a new topic for it.

                                               

                                              • February 25, 2014 at 7:39 pm
                                              ecc26
                                              Participant

                                                I'm so glad it's working for him! If he doesn't already, I hope his pain subsides soona as well. I don't know what to tell you about the ankles, but it's good they ruled out blood clots. I would suggest maybe lymphedema, but if he hasn't had any surgeries it shouldn't be that. If it continues, maybe a PET scan (which covers the whole body) or some other imaging to look at his legs and maybe pelvic area? My guess is that since it's both ankles it's probably something at the pelvic level affecting drainage where vessels come together from both legs. Hopefully it will get better soon, but don't let it go too long without talking to a doctor again.

                                                If you'd like more input from people on this forum though, you should probably start a new topic for it.

                                                 

                                                • February 25, 2014 at 7:39 pm
                                                ecc26
                                                Participant

                                                  I'm so glad it's working for him! If he doesn't already, I hope his pain subsides soona as well. I don't know what to tell you about the ankles, but it's good they ruled out blood clots. I would suggest maybe lymphedema, but if he hasn't had any surgeries it shouldn't be that. If it continues, maybe a PET scan (which covers the whole body) or some other imaging to look at his legs and maybe pelvic area? My guess is that since it's both ankles it's probably something at the pelvic level affecting drainage where vessels come together from both legs. Hopefully it will get better soon, but don't let it go too long without talking to a doctor again.

                                                  If you'd like more input from people on this forum though, you should probably start a new topic for it.

                                                   

                                                  • February 25, 2014 at 5:27 am
                                                  melfighter
                                                  Participant

                                                    Thanks Eva, your message gives me a lot of comfort and helped me realized that others just like my husband are going through the same thing and we are not alone in not knowing what is going to happen.

                                                    I am sorry that you are getting ulcers from worrying, I hope you will find relief soon from worrying too much.  I think you are right that we can't keep waiting around, we need to live life, keep moving forward. As I was driving today with my husband in the car, I realized it should be my happiness moment, a moment to treasure, since I don't know how long he will be sitting next to me in the car. It is focusing on the positives and it is the only way to live.

                                                    He started his first dose of BRAF/MEK Sat around noon time and like a miracle, today all of the lumps that popped up on his back from last week have disappeared!! I simply can't believe it. I hope these medicines will continue to do wonders for him and hopefully will last for many many years to come.

                                                    By the way, both of his ankles are swollen since Sat, he got checked out at UCLA today and came back negative for blood clots, whew!!, the nurse is unsure of the cause.  I wonder if anyone have similar experiences?

                                                     

                                                    • February 24, 2014 at 2:09 pm
                                                    ecc26
                                                    Participant

                                                      I struggle with that question every day- will it be tomorrow? Next month? Next year? We all want to know, but there's just no way to know. For now, give the combo some time to work. Once things have settled down and you're both feeling a bit better/more normal and are ready, then begin to work with your doctors on a plan B- something that might be a little more long lasting. If this is his first therapy you have several options so you can get some information, think about it, maybe make some appointments and decide what is best for you and your family. Once he starts to feel better so will you. It'll always be at the back of your mind, but it won't be so all-consuming. 

                                                      I'm 32 and a planner so this not knowing and just waiting gives me ulcers. I've been unable to work since my diagnosis because I've had to be in and out of hospitals so much I'm not reliable enough as an employee. At this point I'm stable enough, but am aprehensive about job searching and promising something I might not be able to deliver (of course I'd have to disclose the Melanoma uncertainty, which I hate- I'd really prefer to keep my medical problems to myself). I'm starting to figure out though that I can't wait for the melanoma to go away- I have to continue to live my life as if everything is going to be ok. I have to jump in and do what I can, when I can, for as long as I can, and just see how it goes. 

                                                      You might also take a look in your area for support groups you and/or your husband can go to. You're being treated at UCLA, that's probably a good starting point. If they don't have any there they can probably help direct you to groups in the area. There aren't any melanoma specific groups in my area, but there are groups for patients and for spouses/caretakers. It can help to have others to talk to who are going through a similar experience. 

                                                      good luck to you both and as others have said in their posts, feel free to message me 

                                                    • February 24, 2014 at 3:58 am
                                                    ecc26
                                                    Participant

                                                      Hello,

                                                      I'm very sorry you and your husband have been thrown into the terrible whirlwind of stage IV melanoma. I'm also a stage IV and while most of my mets are under the skin (subQ), I have or have had mets in my brain, lung, spine, and a large number of lymph nodes in my chest and abdomen. I've also been where you are where new ones seem to pop up daily and I know what you mean with the back pain- it's really incredibly debilitating. I've had over 30 subQ's and I'm not even sure how many internal lymph nodes, but the ones in my chest got big enough to put pressure on my heart. I've had Interferon, IL-2, WBR, Yervoy (with GM-CSF injections) and now having been disqalified from PD-1 trials for the second time due to brain mets I've been on the BRAF/MEK combo for just over 2 months. 

                                                      The good news with the combo: when it works, it works fast- I had very noticable improvement (in pain and the size of the tumors I could feel) within 2 weeks, others have said they saw results in just a few days. I had a recheck CT at one month all the body tumors (inside and out) had decreased by at least 50% if not more. That earned me a 3 month break from CT's which is a longer break than I've had in a while. It should work in the brain, which will help the effectiveness of the WBR. Most people have very few side effects, despite the very scary list of possible side effects you can read about and will likely be councelled on. I have had no noticable side effects in the 2 months I've been taking them. WBR on the other hand may leave him with some side effects (I had some significant fatigue, hair loss, some short lived nausea, and my ear canals got "burned" like a sunburn and were sore for a few weeks). 

                                                      The downside, which I'm sure you're aware of, is they can be somewhat unpredictable with regards to how long they will last. I think all of us who take these meds struggle a little with that. Because of this many of us wait to use these until we have progressed through other therapies, but there are many on this forum who, like your husband don't have the luxury of trying one of the immunotherapies first as they can take months to be effective. There's also others, like myself, who have run out of other options.

                                                      Right now, this combo can literally be a lifesaver. It can help knock things back to a level that will allow him to get one or more of the immunotherapies that can have longer lasting effects, or join a promising clinical trial if you choose to go that route. There are patients out there that have been on this combo (from trials before FDA approval) for over a year and the combo is still working. Melanoma is horrible and I'm pretty sure I'm not alone when I say I HATE it! But there's always hope. There's so much more available today than there was even just a couple of years ago when I was first diagnosed (2011, there was pretty much just IL-2 or clinical trial) and more therapies on the horizon.

                                                      Believe that this combo can work, because I'm here to say that it can. Believe it will get him through at least until you and he decide to do something different, because it has to.

                                                      Take a deep breath, one step at a time, and try to stay positive. Best of luck

                                                      -Eva

                                                      • February 24, 2014 at 3:58 am
                                                      ecc26
                                                      Participant

                                                        Hello,

                                                        I'm very sorry you and your husband have been thrown into the terrible whirlwind of stage IV melanoma. I'm also a stage IV and while most of my mets are under the skin (subQ), I have or have had mets in my brain, lung, spine, and a large number of lymph nodes in my chest and abdomen. I've also been where you are where new ones seem to pop up daily and I know what you mean with the back pain- it's really incredibly debilitating. I've had over 30 subQ's and I'm not even sure how many internal lymph nodes, but the ones in my chest got big enough to put pressure on my heart. I've had Interferon, IL-2, WBR, Yervoy (with GM-CSF injections) and now having been disqalified from PD-1 trials for the second time due to brain mets I've been on the BRAF/MEK combo for just over 2 months. 

                                                        The good news with the combo: when it works, it works fast- I had very noticable improvement (in pain and the size of the tumors I could feel) within 2 weeks, others have said they saw results in just a few days. I had a recheck CT at one month all the body tumors (inside and out) had decreased by at least 50% if not more. That earned me a 3 month break from CT's which is a longer break than I've had in a while. It should work in the brain, which will help the effectiveness of the WBR. Most people have very few side effects, despite the very scary list of possible side effects you can read about and will likely be councelled on. I have had no noticable side effects in the 2 months I've been taking them. WBR on the other hand may leave him with some side effects (I had some significant fatigue, hair loss, some short lived nausea, and my ear canals got "burned" like a sunburn and were sore for a few weeks). 

                                                        The downside, which I'm sure you're aware of, is they can be somewhat unpredictable with regards to how long they will last. I think all of us who take these meds struggle a little with that. Because of this many of us wait to use these until we have progressed through other therapies, but there are many on this forum who, like your husband don't have the luxury of trying one of the immunotherapies first as they can take months to be effective. There's also others, like myself, who have run out of other options.

                                                        Right now, this combo can literally be a lifesaver. It can help knock things back to a level that will allow him to get one or more of the immunotherapies that can have longer lasting effects, or join a promising clinical trial if you choose to go that route. There are patients out there that have been on this combo (from trials before FDA approval) for over a year and the combo is still working. Melanoma is horrible and I'm pretty sure I'm not alone when I say I HATE it! But there's always hope. There's so much more available today than there was even just a couple of years ago when I was first diagnosed (2011, there was pretty much just IL-2 or clinical trial) and more therapies on the horizon.

                                                        Believe that this combo can work, because I'm here to say that it can. Believe it will get him through at least until you and he decide to do something different, because it has to.

                                                        Take a deep breath, one step at a time, and try to stay positive. Best of luck

                                                        -Eva

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