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New to The Community and To the Cancer Family Brother Has 6 tumors
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New to The Community and To the Cancer Family Brother Has 6 tumors

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  • Post
    • January 21, 2013 at 10:30 pm
    magz0604
    Participant

      Hi Everybody,

      My name is Maggie,

      Hi Everybody,

      My name is Maggie,

      My brother had half his lung removed in November 2 days after christmas he collapsed at work. They thought it was a stroke once they got him to the hospital and did the test they found his melanoma was back 3 tumors on the brain 2 in the chest cavity and one in the neck area all in a month. Merry Christmas to our family right? Yesterday he turned 48 and just finished his 3 weeks of radiation, they are giving him a few weeks off before they start the chemo, he is a very private man and I don't know what to say or do for him except to let him Know I am here for him if he needs me. Everything happened so fast we really did not have anytime to explore any alternitive options so I hope the radiation and chemo are the right avenues to take. This is all new to me and my family and my parents and brother are just listening to what the doctors tell us to do. He is so young I just want to know are we doing the right thing should he go thru with the chemo when it comes time? I would appreciate feed back from anyone who has been dealing with this longer then us. Like I said before we are very new to this. Thanks! 

    Viewing 8 reply threads
    • Replies
        • January 21, 2013 at 11:23 pm
        awillett1991
        Participant
          Maggie – so very sorry to hear this about your brother, I know this impacts the entire family and is so very overwhelming. You find lots of support and advice here, as well as many stage 4 survivors. The first piece of advice anyone on here would give you – melanoma is not like other cancers. Is your brother being seen by a melanoma specialist? Melanoma is not like other cancers and he really needs to be seen by a specialist, not a general oncologist.

          There are options, including two new drugs approved in 2011, the first in many, many years, but they aren’t “chemo” exactly. Do you know what he will be taking?

          Regards.

          • January 21, 2013 at 11:23 pm
          awillett1991
          Participant
            Maggie – so very sorry to hear this about your brother, I know this impacts the entire family and is so very overwhelming. You find lots of support and advice here, as well as many stage 4 survivors. The first piece of advice anyone on here would give you – melanoma is not like other cancers. Is your brother being seen by a melanoma specialist? Melanoma is not like other cancers and he really needs to be seen by a specialist, not a general oncologist.

            There are options, including two new drugs approved in 2011, the first in many, many years, but they aren’t “chemo” exactly. Do you know what he will be taking?

            Regards.

            • January 21, 2013 at 11:23 pm
            awillett1991
            Participant
              Maggie – so very sorry to hear this about your brother, I know this impacts the entire family and is so very overwhelming. You find lots of support and advice here, as well as many stage 4 survivors. The first piece of advice anyone on here would give you – melanoma is not like other cancers. Is your brother being seen by a melanoma specialist? Melanoma is not like other cancers and he really needs to be seen by a specialist, not a general oncologist.

              There are options, including two new drugs approved in 2011, the first in many, many years, but they aren’t “chemo” exactly. Do you know what he will be taking?

              Regards.

              • January 22, 2013 at 5:23 am
              sjl
              Participant

                Maggie

                  I'm sorry that your brother and your family are in this position.  I will echo the need to get to a melanoma specialist.  Not many on this board are on traditional chemo but a combination of carbo/taxol has been working very well for my husband.  His is mucosal and a few months after having surgery to remove the melanoma in his nose he developed tumors on his neck that grew quite rapidly.  He was in pretty bad shape and for him, chemo was the best way to go.  The one thing I'v learned is that everyone's melanoma seems to be different, what works for one may not work for another, and that at least a few people respond to any given treatment.  A melanoma specialist will be able to guide you in making the right choices for your particular situation.

                It would be good for him to be tested for BRAF and cKitmutations as there are treatments for those types that seem to work well for a lot of people from what I can gather. 

                Also, get as many copies of his records as you can, along with copies of all scans and so on,  Keep a notebook of everything that goes on at each appointment and be persistant in asking questions.  It may not be possible for anyone to answer some of your questions and that is ok but with our doctors, if we dont ask they don't tell us much of anything,  Be prepared to follow up and make sure that they are actually doing the tests and such that they say they are and that information is being passed back and forth as it is supposed to be.  We have found that the medical personnel lose things, miscommunicate amoung themselves and don't always follow through on things.  It's not that they are bad doctors or staff per se but they are often overworked and understaffed and each individual is just one of many they need to keep track of.  My husband's case is perhaps a little more complicated than others as he is dealing with both melanoma and a second primary lung cancer and I'm sure that added to the confusion.  But just be on your toes as much as you can in case things go missing or communication amoung the staff becomes a problem.

                I'm sure that others on this board who are much more knowledgable will come along to help.  We've been dealing with this mess since April and there's a lot I don't know.  I do know that a lot of prayers have and are being said for my husband and I truly believe that God has been working a miracle in him.  He was so bad in August that one doctor was surprised to see him at an appointment in October because he didn't think my husband would make it.  At the last scan he was down to two tiny tumors and three weeks later they could no longer be felt.  He will be scanned in a few days and we will then know what's going on.  Hopefully it will be good news.

                Oh, and if your brother does wind up on the same treatment as my husband, my husband has, for the most part, been going to work and living life as usual.  Sometimes he never missed a beat after his treatment.  He's down to the last three now and they are now making him extremely tired.  He usually feels fine the day after chemo, then sleeps most of the next couple of days, then returns to normal life.   He doesn't feel sick, his appetite is fine, and he does the things he has always done.

                I hope this long post as least gives you some encouragement.

                  • January 22, 2013 at 12:32 pm
                  buffcody
                  Participant

                    Wonderful reply.  Your experiences will be most helpful to the original poster and most hopeful to the rest of us.

                    • January 22, 2013 at 12:32 pm
                    buffcody
                    Participant

                      Wonderful reply.  Your experiences will be most helpful to the original poster and most hopeful to the rest of us.

                      • January 22, 2013 at 12:32 pm
                      buffcody
                      Participant

                        Wonderful reply.  Your experiences will be most helpful to the original poster and most hopeful to the rest of us.

                      • January 22, 2013 at 5:23 am
                      sjl
                      Participant

                        Maggie

                          I'm sorry that your brother and your family are in this position.  I will echo the need to get to a melanoma specialist.  Not many on this board are on traditional chemo but a combination of carbo/taxol has been working very well for my husband.  His is mucosal and a few months after having surgery to remove the melanoma in his nose he developed tumors on his neck that grew quite rapidly.  He was in pretty bad shape and for him, chemo was the best way to go.  The one thing I'v learned is that everyone's melanoma seems to be different, what works for one may not work for another, and that at least a few people respond to any given treatment.  A melanoma specialist will be able to guide you in making the right choices for your particular situation.

                        It would be good for him to be tested for BRAF and cKitmutations as there are treatments for those types that seem to work well for a lot of people from what I can gather. 

                        Also, get as many copies of his records as you can, along with copies of all scans and so on,  Keep a notebook of everything that goes on at each appointment and be persistant in asking questions.  It may not be possible for anyone to answer some of your questions and that is ok but with our doctors, if we dont ask they don't tell us much of anything,  Be prepared to follow up and make sure that they are actually doing the tests and such that they say they are and that information is being passed back and forth as it is supposed to be.  We have found that the medical personnel lose things, miscommunicate amoung themselves and don't always follow through on things.  It's not that they are bad doctors or staff per se but they are often overworked and understaffed and each individual is just one of many they need to keep track of.  My husband's case is perhaps a little more complicated than others as he is dealing with both melanoma and a second primary lung cancer and I'm sure that added to the confusion.  But just be on your toes as much as you can in case things go missing or communication amoung the staff becomes a problem.

                        I'm sure that others on this board who are much more knowledgable will come along to help.  We've been dealing with this mess since April and there's a lot I don't know.  I do know that a lot of prayers have and are being said for my husband and I truly believe that God has been working a miracle in him.  He was so bad in August that one doctor was surprised to see him at an appointment in October because he didn't think my husband would make it.  At the last scan he was down to two tiny tumors and three weeks later they could no longer be felt.  He will be scanned in a few days and we will then know what's going on.  Hopefully it will be good news.

                        Oh, and if your brother does wind up on the same treatment as my husband, my husband has, for the most part, been going to work and living life as usual.  Sometimes he never missed a beat after his treatment.  He's down to the last three now and they are now making him extremely tired.  He usually feels fine the day after chemo, then sleeps most of the next couple of days, then returns to normal life.   He doesn't feel sick, his appetite is fine, and he does the things he has always done.

                        I hope this long post as least gives you some encouragement.

                        • January 22, 2013 at 5:23 am
                        sjl
                        Participant

                          Maggie

                            I'm sorry that your brother and your family are in this position.  I will echo the need to get to a melanoma specialist.  Not many on this board are on traditional chemo but a combination of carbo/taxol has been working very well for my husband.  His is mucosal and a few months after having surgery to remove the melanoma in his nose he developed tumors on his neck that grew quite rapidly.  He was in pretty bad shape and for him, chemo was the best way to go.  The one thing I'v learned is that everyone's melanoma seems to be different, what works for one may not work for another, and that at least a few people respond to any given treatment.  A melanoma specialist will be able to guide you in making the right choices for your particular situation.

                          It would be good for him to be tested for BRAF and cKitmutations as there are treatments for those types that seem to work well for a lot of people from what I can gather. 

                          Also, get as many copies of his records as you can, along with copies of all scans and so on,  Keep a notebook of everything that goes on at each appointment and be persistant in asking questions.  It may not be possible for anyone to answer some of your questions and that is ok but with our doctors, if we dont ask they don't tell us much of anything,  Be prepared to follow up and make sure that they are actually doing the tests and such that they say they are and that information is being passed back and forth as it is supposed to be.  We have found that the medical personnel lose things, miscommunicate amoung themselves and don't always follow through on things.  It's not that they are bad doctors or staff per se but they are often overworked and understaffed and each individual is just one of many they need to keep track of.  My husband's case is perhaps a little more complicated than others as he is dealing with both melanoma and a second primary lung cancer and I'm sure that added to the confusion.  But just be on your toes as much as you can in case things go missing or communication amoung the staff becomes a problem.

                          I'm sure that others on this board who are much more knowledgable will come along to help.  We've been dealing with this mess since April and there's a lot I don't know.  I do know that a lot of prayers have and are being said for my husband and I truly believe that God has been working a miracle in him.  He was so bad in August that one doctor was surprised to see him at an appointment in October because he didn't think my husband would make it.  At the last scan he was down to two tiny tumors and three weeks later they could no longer be felt.  He will be scanned in a few days and we will then know what's going on.  Hopefully it will be good news.

                          Oh, and if your brother does wind up on the same treatment as my husband, my husband has, for the most part, been going to work and living life as usual.  Sometimes he never missed a beat after his treatment.  He's down to the last three now and they are now making him extremely tired.  He usually feels fine the day after chemo, then sleeps most of the next couple of days, then returns to normal life.   He doesn't feel sick, his appetite is fine, and he does the things he has always done.

                          I hope this long post as least gives you some encouragement.

                          • January 23, 2013 at 12:41 pm
                          Thandster
                          Participant
                            In my opinion, the previous replies are spot on. Seeing a melanoma specialist is the first priority. If you need help finding one, there is a search on this site or post where you’re from and people can offer suggestions. Keep us updated on what’s happening.
                              • January 23, 2013 at 3:47 pm
                              POW
                              Participant

                                I am in a similar position to you. Out of nowhere, my brother was diagnosed with Stoage IV melamona with tumors all over is body, including his brain. At the time, we were told he had 8-12 weeks to live. The whole family was reeling with shock and panic. That first month was an agonizing experience. 

                                My brother, like yours, is a very private person. And he is one of those people who just listens to what the doctors say (any doctor) and says, "OK, do that". I, on the other hand, am an avid internet researcher and a real pit bull when it comes to getting the best treatment available for myself or for my loved ones. So what I did for my brother (with his permission) was join this forum and research the hell out of melanoma and all the new treatments and clinical trials. Then I got on the phone and made appointments for him at a melanoma specialty center (Moffitt Cancer Center) and was present at the consultations to be certain that the doctors knew that we were "up" on melanoma and that we expected the best from them. So, for example, when they suggested whole brain radiation, I asked, "What about gamma knife instead?" Gamma knife may or may not have been appropriate for my brother's case, but just asking the question put the doctors on notice that we had done our homework. My brother is still around 6 months later.

                                So depending on the relationship between you and your brother, he may allow you to do research for him and inform him about new treatment options his current doctors may not be considering. Also, being as sick, fatigued, and frightened as he probably is, he may not have the energy to make endless phone calls or the patience to sit on hold forever waiting to talk to melanoma clinics. So you could offer to do that for him. And, of course, keep reading and posting on this forum so you can get the help and support you need as you accompany your brother on this journey. 

                                As far as your brother's treatment (which you don't really ask about) I agree with the other posters here. Before starting any chemo, I would get a consultation with a melanoma specialist at a Melanoma Center of Excellence. Traditional chemo does not now and never did work well on melanoma– there are better treatments available now. Many of the most promising treatments are currently in clinical trials but your brother could be eliminated from clinical trials if he already had any type of chemo. So I recommend that he get a second opinion before making a final decision about the treatment he wants. Oh, and suggest that your brother join this forum, too. The information and support he will receive here will be very helpful to him. 

                                • January 23, 2013 at 3:47 pm
                                POW
                                Participant

                                  I am in a similar position to you. Out of nowhere, my brother was diagnosed with Stoage IV melamona with tumors all over is body, including his brain. At the time, we were told he had 8-12 weeks to live. The whole family was reeling with shock and panic. That first month was an agonizing experience. 

                                  My brother, like yours, is a very private person. And he is one of those people who just listens to what the doctors say (any doctor) and says, "OK, do that". I, on the other hand, am an avid internet researcher and a real pit bull when it comes to getting the best treatment available for myself or for my loved ones. So what I did for my brother (with his permission) was join this forum and research the hell out of melanoma and all the new treatments and clinical trials. Then I got on the phone and made appointments for him at a melanoma specialty center (Moffitt Cancer Center) and was present at the consultations to be certain that the doctors knew that we were "up" on melanoma and that we expected the best from them. So, for example, when they suggested whole brain radiation, I asked, "What about gamma knife instead?" Gamma knife may or may not have been appropriate for my brother's case, but just asking the question put the doctors on notice that we had done our homework. My brother is still around 6 months later.

                                  So depending on the relationship between you and your brother, he may allow you to do research for him and inform him about new treatment options his current doctors may not be considering. Also, being as sick, fatigued, and frightened as he probably is, he may not have the energy to make endless phone calls or the patience to sit on hold forever waiting to talk to melanoma clinics. So you could offer to do that for him. And, of course, keep reading and posting on this forum so you can get the help and support you need as you accompany your brother on this journey. 

                                  As far as your brother's treatment (which you don't really ask about) I agree with the other posters here. Before starting any chemo, I would get a consultation with a melanoma specialist at a Melanoma Center of Excellence. Traditional chemo does not now and never did work well on melanoma– there are better treatments available now. Many of the most promising treatments are currently in clinical trials but your brother could be eliminated from clinical trials if he already had any type of chemo. So I recommend that he get a second opinion before making a final decision about the treatment he wants. Oh, and suggest that your brother join this forum, too. The information and support he will receive here will be very helpful to him. 

                                  • January 23, 2013 at 3:47 pm
                                  POW
                                  Participant

                                    I am in a similar position to you. Out of nowhere, my brother was diagnosed with Stoage IV melamona with tumors all over is body, including his brain. At the time, we were told he had 8-12 weeks to live. The whole family was reeling with shock and panic. That first month was an agonizing experience. 

                                    My brother, like yours, is a very private person. And he is one of those people who just listens to what the doctors say (any doctor) and says, "OK, do that". I, on the other hand, am an avid internet researcher and a real pit bull when it comes to getting the best treatment available for myself or for my loved ones. So what I did for my brother (with his permission) was join this forum and research the hell out of melanoma and all the new treatments and clinical trials. Then I got on the phone and made appointments for him at a melanoma specialty center (Moffitt Cancer Center) and was present at the consultations to be certain that the doctors knew that we were "up" on melanoma and that we expected the best from them. So, for example, when they suggested whole brain radiation, I asked, "What about gamma knife instead?" Gamma knife may or may not have been appropriate for my brother's case, but just asking the question put the doctors on notice that we had done our homework. My brother is still around 6 months later.

                                    So depending on the relationship between you and your brother, he may allow you to do research for him and inform him about new treatment options his current doctors may not be considering. Also, being as sick, fatigued, and frightened as he probably is, he may not have the energy to make endless phone calls or the patience to sit on hold forever waiting to talk to melanoma clinics. So you could offer to do that for him. And, of course, keep reading and posting on this forum so you can get the help and support you need as you accompany your brother on this journey. 

                                    As far as your brother's treatment (which you don't really ask about) I agree with the other posters here. Before starting any chemo, I would get a consultation with a melanoma specialist at a Melanoma Center of Excellence. Traditional chemo does not now and never did work well on melanoma– there are better treatments available now. Many of the most promising treatments are currently in clinical trials but your brother could be eliminated from clinical trials if he already had any type of chemo. So I recommend that he get a second opinion before making a final decision about the treatment he wants. Oh, and suggest that your brother join this forum, too. The information and support he will receive here will be very helpful to him. 

                                  • January 23, 2013 at 12:41 pm
                                  Thandster
                                  Participant
                                    In my opinion, the previous replies are spot on. Seeing a melanoma specialist is the first priority. If you need help finding one, there is a search on this site or post where you’re from and people can offer suggestions. Keep us updated on what’s happening.
                                    • January 23, 2013 at 12:41 pm
                                    Thandster
                                    Participant
                                      In my opinion, the previous replies are spot on. Seeing a melanoma specialist is the first priority. If you need help finding one, there is a search on this site or post where you’re from and people can offer suggestions. Keep us updated on what’s happening.
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