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11 months NED

Forums General Melanoma Community 11 months NED

  • Post
    hope4cure1
    Participant

      We got scan results today.  My husband is now 11 months NED.  September, 2010 he had 2 lung mets removed surgically.  February 2011 he had 4 liver mets and 2 lymph nodes in his chest.

      We got scan results today.  My husband is now 11 months NED.  September, 2010 he had 2 lung mets removed surgically.  February 2011 he had 4 liver mets and 2 lymph nodes in his chest. He started a combo of Carboplatin, Abraxane, Avastin.  Since last September, he has just been on Avastin for maintenance. I hesitate to post this because I know that chemo doesn't have the greatest response, but I do want to give hope to anyone who feels that they are being thrown chemo in desperation. Each case is unique, which may explain the varying responses to treatment.

      When I first came to this forum, I scoured the board for whispers of hope from people who were seeing success.  I hung on every NED. I think many of us do that.  Long time survivors here impart hope.The sage advice of so many caring people are gifts of knowledge. The strength, support, compassion and courage that so many of you have shown here touches many deeply.  Each loss hurts, each good report lifts.  How a group of virtual strangers can mean so much baffles me.  You do, and I thank you a million times over.

      Hope  

    Viewing 20 reply threads
    • Replies
        aldakota22
        Participant

          Like you say it is uplifting to read posts from NED warriors.Pray every day to be the same and for everyone else on site.Keep the good news comming.    Al

            hope4cure1
            Participant

              Hey Al,

              Prayers coming right back to you.  I hope Zelboraf continues to do its magic for you!

              Hope

              hope4cure1
              Participant

                Hey Al,

                Prayers coming right back to you.  I hope Zelboraf continues to do its magic for you!

                Hope

                hope4cure1
                Participant

                  Hey Al,

                  Prayers coming right back to you.  I hope Zelboraf continues to do its magic for you!

                  Hope

                aldakota22
                Participant

                  Like you say it is uplifting to read posts from NED warriors.Pray every day to be the same and for everyone else on site.Keep the good news comming.    Al

                  aldakota22
                  Participant

                    Like you say it is uplifting to read posts from NED warriors.Pray every day to be the same and for everyone else on site.Keep the good news comming.    Al

                    WendyPam
                    Participant

                      Hi Hope,

                       

                      I am so excited and happy to read your updated post. My Mother who is Stage Vl just started a combo close to the one your husband was on. I am going to ask our Dr if he would bring Avastin into my Mother's combo of Abraxane and Carbo. She just completed her first infusion and we have our second this Tuesday. My Mom has mucosal melanoma and is braf – and c-kit -. I always look for your post because it gives some hope for my Mother. She has been Stage Vl for 3 years. Things have started to progress with her spleen being the biggest concern right now. We have spleeen, (1) liver, outer stomach and lungs. I am hoping that we can get her stable and wipe some of these tumors out until an Anti-pd1 trial opens. We did Yervoy and stable for 8 months. Reinduction she developed Colitis.  In regards to the  chemo  it was hard for her on day 4,5, and 6. Is that normal from your experience?  Her energy level was a little better today. We consulted and considered radations to the spleen, but that right know would be to hard on her. I pray that we get a response and maybe then would consider revisiting radiation if needed. Do you think that I should push to bring Avastin into her treatment? I know that the same treatment on people doesn't guarantee the same response, but I pray for my Mother and everyone on this board everyday all day.

                      You right it is strange how virtual friends can mean so much. We're all in this fight together!  I have made friends of all walks of life through this board. Even a dear friend from China who is helping her close sister-in-law. They  are coming to the Moffitt Cancer Center in Tampa very soon. I hope to be able to travel to see her.

                      Hope, whatever insight you can share with me in regards to your husbands chemo cycles would help me so much. I'm sending you lots of love and positive energy and a forever of NED scans!

                       

                      Wendy

                        hope4cure1
                        Participant

                          Hi Wendy,

                          Yes, as I remember, day's 4,5,6 after an infusion were when side effects hit.  I think the metalic taste started on day 3 each cycle.  He did lose his hair, but it started growing back about 3 months in.  He was fatigued, but was still able to ski that season, so it didn't wipe him out completely.  He had mouth sores for a while.  He also had nosebleeds in the beginning, but I think that was from the Avastin.  The nosebleeds have stopped completely.  Food didn't taste good to him for a quite a while, so finding appealing food was difficult.  Chicken soup and Chinese hot/sour soup tasted good to him. He didn't experience nausea.  Drinking lots of water helped.  He eventually had an allergic reaction to the carboplatin, so that was discontinued midway through treatment.  It didn't seem to make a difference success wise. He did experience "chemo-brain" but was able to continue working.

                          As far as the Avastin, you could ask your doctor, and also see if your insurance company will cover it.  The purpose of Avastin is to cut off the blood suppy which tumors need in order to grow.  There is a video on YouTube where Dr. Boasberg talks about this combo if you want to check it out.  My husband has been on Avastin alone since last September, and so far, so good.  We have asked how long he could be on Avastin and were told "indefinitely", and "as long as it works."  I think there was an abstract recently that addressed continuous Avastin treatment, but I can't remember which type of cancer that addressed.

                          Wendy, my heart goes out to you as caregiver for your mother.  She is lucky to have you by her side, cheering her on. I will keep her in my prayers and will be anxious to her of her progress.

                          Hope

                          hope4cure1
                          Participant

                            Hi Wendy,

                            Yes, as I remember, day's 4,5,6 after an infusion were when side effects hit.  I think the metalic taste started on day 3 each cycle.  He did lose his hair, but it started growing back about 3 months in.  He was fatigued, but was still able to ski that season, so it didn't wipe him out completely.  He had mouth sores for a while.  He also had nosebleeds in the beginning, but I think that was from the Avastin.  The nosebleeds have stopped completely.  Food didn't taste good to him for a quite a while, so finding appealing food was difficult.  Chicken soup and Chinese hot/sour soup tasted good to him. He didn't experience nausea.  Drinking lots of water helped.  He eventually had an allergic reaction to the carboplatin, so that was discontinued midway through treatment.  It didn't seem to make a difference success wise. He did experience "chemo-brain" but was able to continue working.

                            As far as the Avastin, you could ask your doctor, and also see if your insurance company will cover it.  The purpose of Avastin is to cut off the blood suppy which tumors need in order to grow.  There is a video on YouTube where Dr. Boasberg talks about this combo if you want to check it out.  My husband has been on Avastin alone since last September, and so far, so good.  We have asked how long he could be on Avastin and were told "indefinitely", and "as long as it works."  I think there was an abstract recently that addressed continuous Avastin treatment, but I can't remember which type of cancer that addressed.

                            Wendy, my heart goes out to you as caregiver for your mother.  She is lucky to have you by her side, cheering her on. I will keep her in my prayers and will be anxious to her of her progress.

                            Hope

                            hope4cure1
                            Participant

                              Hi Wendy,

                              Yes, as I remember, day's 4,5,6 after an infusion were when side effects hit.  I think the metalic taste started on day 3 each cycle.  He did lose his hair, but it started growing back about 3 months in.  He was fatigued, but was still able to ski that season, so it didn't wipe him out completely.  He had mouth sores for a while.  He also had nosebleeds in the beginning, but I think that was from the Avastin.  The nosebleeds have stopped completely.  Food didn't taste good to him for a quite a while, so finding appealing food was difficult.  Chicken soup and Chinese hot/sour soup tasted good to him. He didn't experience nausea.  Drinking lots of water helped.  He eventually had an allergic reaction to the carboplatin, so that was discontinued midway through treatment.  It didn't seem to make a difference success wise. He did experience "chemo-brain" but was able to continue working.

                              As far as the Avastin, you could ask your doctor, and also see if your insurance company will cover it.  The purpose of Avastin is to cut off the blood suppy which tumors need in order to grow.  There is a video on YouTube where Dr. Boasberg talks about this combo if you want to check it out.  My husband has been on Avastin alone since last September, and so far, so good.  We have asked how long he could be on Avastin and were told "indefinitely", and "as long as it works."  I think there was an abstract recently that addressed continuous Avastin treatment, but I can't remember which type of cancer that addressed.

                              Wendy, my heart goes out to you as caregiver for your mother.  She is lucky to have you by her side, cheering her on. I will keep her in my prayers and will be anxious to her of her progress.

                              Hope

                            WendyPam
                            Participant

                              Hi Hope,

                               

                              I am so excited and happy to read your updated post. My Mother who is Stage Vl just started a combo close to the one your husband was on. I am going to ask our Dr if he would bring Avastin into my Mother's combo of Abraxane and Carbo. She just completed her first infusion and we have our second this Tuesday. My Mom has mucosal melanoma and is braf – and c-kit -. I always look for your post because it gives some hope for my Mother. She has been Stage Vl for 3 years. Things have started to progress with her spleen being the biggest concern right now. We have spleeen, (1) liver, outer stomach and lungs. I am hoping that we can get her stable and wipe some of these tumors out until an Anti-pd1 trial opens. We did Yervoy and stable for 8 months. Reinduction she developed Colitis.  In regards to the  chemo  it was hard for her on day 4,5, and 6. Is that normal from your experience?  Her energy level was a little better today. We consulted and considered radations to the spleen, but that right know would be to hard on her. I pray that we get a response and maybe then would consider revisiting radiation if needed. Do you think that I should push to bring Avastin into her treatment? I know that the same treatment on people doesn't guarantee the same response, but I pray for my Mother and everyone on this board everyday all day.

                              You right it is strange how virtual friends can mean so much. We're all in this fight together!  I have made friends of all walks of life through this board. Even a dear friend from China who is helping her close sister-in-law. They  are coming to the Moffitt Cancer Center in Tampa very soon. I hope to be able to travel to see her.

                              Hope, whatever insight you can share with me in regards to your husbands chemo cycles would help me so much. I'm sending you lots of love and positive energy and a forever of NED scans!

                               

                              Wendy

                              WendyPam
                              Participant

                                Hi Hope,

                                 

                                I am so excited and happy to read your updated post. My Mother who is Stage Vl just started a combo close to the one your husband was on. I am going to ask our Dr if he would bring Avastin into my Mother's combo of Abraxane and Carbo. She just completed her first infusion and we have our second this Tuesday. My Mom has mucosal melanoma and is braf – and c-kit -. I always look for your post because it gives some hope for my Mother. She has been Stage Vl for 3 years. Things have started to progress with her spleen being the biggest concern right now. We have spleeen, (1) liver, outer stomach and lungs. I am hoping that we can get her stable and wipe some of these tumors out until an Anti-pd1 trial opens. We did Yervoy and stable for 8 months. Reinduction she developed Colitis.  In regards to the  chemo  it was hard for her on day 4,5, and 6. Is that normal from your experience?  Her energy level was a little better today. We consulted and considered radations to the spleen, but that right know would be to hard on her. I pray that we get a response and maybe then would consider revisiting radiation if needed. Do you think that I should push to bring Avastin into her treatment? I know that the same treatment on people doesn't guarantee the same response, but I pray for my Mother and everyone on this board everyday all day.

                                You right it is strange how virtual friends can mean so much. We're all in this fight together!  I have made friends of all walks of life through this board. Even a dear friend from China who is helping her close sister-in-law. They  are coming to the Moffitt Cancer Center in Tampa very soon. I hope to be able to travel to see her.

                                Hope, whatever insight you can share with me in regards to your husbands chemo cycles would help me so much. I'm sending you lots of love and positive energy and a forever of NED scans!

                                 

                                Wendy

                                Swanee
                                Participant

                                  Dear Hope……that is what we are all about!   We should all be living life to the fullest regardless of cancer/medical diagnosis.  However……if we haven't been liv'n that way……the diagnosis  smacks us right in the face to WAKE US UP!      Thank you for  NED  report…….we all need hope, more than anything else….and your gift is so greatly appreciated!!  I don't know how it's going to go for so many of you…..we will all have our own journey here ……. but what we can share is our own hope that we will survive and be able to tell others of what we went through and how we overcame.  So please, keep holding on tight to the dream of tomorrow and beyond………we must invision and believe that we will be here tomorrow ………Congratulations on NED!!

                                    hope4cure1
                                    Participant

                                      Oh, Swanee, if you're not a motivational speaker…..you should be!!!!  You are so right that this diagnosis is reality slap.  We have spent a lot of time talking about how we were sleepwalking through life until suddenly, with so much in jeopardy, words became sweeter, colors brighter and love so very intense.  As all of us fight together toward recovery, let's hope to hang on to what living means.  Please keep us updated on your progress.

                                      Hope 

                                      hope4cure1
                                      Participant

                                        Oh, Swanee, if you're not a motivational speaker…..you should be!!!!  You are so right that this diagnosis is reality slap.  We have spent a lot of time talking about how we were sleepwalking through life until suddenly, with so much in jeopardy, words became sweeter, colors brighter and love so very intense.  As all of us fight together toward recovery, let's hope to hang on to what living means.  Please keep us updated on your progress.

                                        Hope 

                                        hope4cure1
                                        Participant

                                          Oh, Swanee, if you're not a motivational speaker…..you should be!!!!  You are so right that this diagnosis is reality slap.  We have spent a lot of time talking about how we were sleepwalking through life until suddenly, with so much in jeopardy, words became sweeter, colors brighter and love so very intense.  As all of us fight together toward recovery, let's hope to hang on to what living means.  Please keep us updated on your progress.

                                          Hope 

                                        Swanee
                                        Participant

                                          Dear Hope……that is what we are all about!   We should all be living life to the fullest regardless of cancer/medical diagnosis.  However……if we haven't been liv'n that way……the diagnosis  smacks us right in the face to WAKE US UP!      Thank you for  NED  report…….we all need hope, more than anything else….and your gift is so greatly appreciated!!  I don't know how it's going to go for so many of you…..we will all have our own journey here ……. but what we can share is our own hope that we will survive and be able to tell others of what we went through and how we overcame.  So please, keep holding on tight to the dream of tomorrow and beyond………we must invision and believe that we will be here tomorrow ………Congratulations on NED!!

                                          Swanee
                                          Participant

                                            Dear Hope……that is what we are all about!   We should all be living life to the fullest regardless of cancer/medical diagnosis.  However……if we haven't been liv'n that way……the diagnosis  smacks us right in the face to WAKE US UP!      Thank you for  NED  report…….we all need hope, more than anything else….and your gift is so greatly appreciated!!  I don't know how it's going to go for so many of you…..we will all have our own journey here ……. but what we can share is our own hope that we will survive and be able to tell others of what we went through and how we overcame.  So please, keep holding on tight to the dream of tomorrow and beyond………we must invision and believe that we will be here tomorrow ………Congratulations on NED!!

                                            s Mom
                                            Participant

                                              First of all – WOOO HOOO on NED!! 

                                              Secondly, you said it best…long time survivors here impart hope.  Thanks for your good report and your gift of hope ๐Ÿ™‚

                                              Bridgette (Jeff's Mom)

                                              s Mom
                                              Participant

                                                First of all – WOOO HOOO on NED!! 

                                                Secondly, you said it best…long time survivors here impart hope.  Thanks for your good report and your gift of hope ๐Ÿ™‚

                                                Bridgette (Jeff's Mom)

                                                  hope4cure1
                                                  Participant

                                                    Hi Bridgette,

                                                    I think of your son and his beautiful family often.  I hope that his course of treatment will prove nothing but successful.  I bet he's grateful that he has a loving mom looking out for him.

                                                    Hope

                                                    hope4cure1
                                                    Participant

                                                      Hi Bridgette,

                                                      I think of your son and his beautiful family often.  I hope that his course of treatment will prove nothing but successful.  I bet he's grateful that he has a loving mom looking out for him.

                                                      Hope

                                                      hope4cure1
                                                      Participant

                                                        Hi Bridgette,

                                                        I think of your son and his beautiful family often.  I hope that his course of treatment will prove nothing but successful.  I bet he's grateful that he has a loving mom looking out for him.

                                                        Hope

                                                      s Mom
                                                      Participant

                                                        First of all – WOOO HOOO on NED!! 

                                                        Secondly, you said it best…long time survivors here impart hope.  Thanks for your good report and your gift of hope ๐Ÿ™‚

                                                        Bridgette (Jeff's Mom)

                                                        JerryfromFauq
                                                        Participant

                                                          Amazing what a year out does for one!  Have to totally agree that even if a chemo treatment is given in desparation, that does not mean that it won't work for an indivivual.  We all react so differently.  Do you know  which Oncoprotein and/or DNA mutatiuon his melanoma tumors contain?

                                                          JerryfromFauq
                                                          Participant

                                                            Amazing what a year out does for one!  Have to totally agree that even if a chemo treatment is given in desparation, that does not mean that it won't work for an indivivual.  We all react so differently.  Do you know  which Oncoprotein and/or DNA mutatiuon his melanoma tumors contain?

                                                              hope4cure1
                                                              Participant

                                                                Hi Jerry,

                                                                All I know if braf negative, nras positive.  If I learn more, I'll certainly post. Keep up your good prorgress!!!

                                                                Hope

                                                                hope4cure1
                                                                Participant

                                                                  Hi Jerry,

                                                                  All I know if braf negative, nras positive.  If I learn more, I'll certainly post. Keep up your good prorgress!!!

                                                                  Hope

                                                                  hope4cure1
                                                                  Participant

                                                                    Hi Jerry,

                                                                    All I know if braf negative, nras positive.  If I learn more, I'll certainly post. Keep up your good prorgress!!!

                                                                    Hope

                                                                  JerryfromFauq
                                                                  Participant

                                                                    Amazing what a year out does for one!  Have to totally agree that even if a chemo treatment is given in desparation, that does not mean that it won't work for an indivivual.  We all react so differently.  Do you know  which Oncoprotein and/or DNA mutatiuon his melanoma tumors contain?

                                                                    killmel
                                                                    Participant

                                                                      Hi Hope,

                                                                       

                                                                      Just wondering how your husband is doing???

                                                                       

                                                                      Hope his scans are clear!

                                                                      MaryBeth

                                                                      killmel
                                                                      Participant

                                                                        Hi Hope,

                                                                         

                                                                        Just wondering how your husband is doing???

                                                                         

                                                                        Hope his scans are clear!

                                                                        MaryBeth

                                                                        killmel
                                                                        Participant

                                                                          Hi Hope,

                                                                           

                                                                          Just wondering how your husband is doing???

                                                                           

                                                                          Hope his scans are clear!

                                                                          MaryBeth

                                                                          jcmp
                                                                          Participant

                                                                            That's great news!  You just never know what will work.  There seems to be renewed interest in the combination chemotherapy drugs for some melanoma patients.  My husband has had three doses of carboplatin/taxol, and it appears to have slowed down his disease, which was rapidly progressing.  I saw a recent study with carboplatin/taxol/avastin, which had good results. 

                                                                             

                                                                              sjl
                                                                              Participant

                                                                                My husband is doing well on carbo/taxol.  He was in pretty bad shape with very rapid tumor growth, so bad that one doctor  was very happy to see him about 8 weeks after treatment had begun because he didn't think he was goinig to make it. Thisis the only treatment he has had for melanoma other than surgery. After 2 rounds, his tumors had shrunk by 75% and after 2 more rounds they were still shrinking.  He just completed round 5 last week and has 5 more to go.  The doctor said he has seen a durable response on this regiman.  It works in about 15% of cases.     A lot of people are praying for my husband and we are praying that God will continue to work a miracle in him.  Good luck to you.

                                                                                sjl
                                                                                Participant

                                                                                  My husband is doing well on carbo/taxol.  He was in pretty bad shape with very rapid tumor growth, so bad that one doctor  was very happy to see him about 8 weeks after treatment had begun because he didn't think he was goinig to make it. Thisis the only treatment he has had for melanoma other than surgery. After 2 rounds, his tumors had shrunk by 75% and after 2 more rounds they were still shrinking.  He just completed round 5 last week and has 5 more to go.  The doctor said he has seen a durable response on this regiman.  It works in about 15% of cases.     A lot of people are praying for my husband and we are praying that God will continue to work a miracle in him.  Good luck to you.

                                                                                  jcmp
                                                                                  Participant

                                                                                    Hi sjl,

                                                                                    The same thing has happened with my  husband.  He is doing significantly better after the carbo/taxol.  It apparently worked to some degree.  He was on Zelboraf for about 8 months and once his tumors developed resistance, they began to grow very rapidly.  I guess the unknown is how long will carbo/taxol work?  No one really seems to know since not many melanoma patients are on it.

                                                                                    Thanks. 

                                                                                     

                                                                                    jcmp
                                                                                    Participant

                                                                                      Hi sjl,

                                                                                      The same thing has happened with my  husband.  He is doing significantly better after the carbo/taxol.  It apparently worked to some degree.  He was on Zelboraf for about 8 months and once his tumors developed resistance, they began to grow very rapidly.  I guess the unknown is how long will carbo/taxol work?  No one really seems to know since not many melanoma patients are on it.

                                                                                      Thanks. 

                                                                                       

                                                                                      jcmp
                                                                                      Participant

                                                                                        Hi sjl,

                                                                                        The same thing has happened with my  husband.  He is doing significantly better after the carbo/taxol.  It apparently worked to some degree.  He was on Zelboraf for about 8 months and once his tumors developed resistance, they began to grow very rapidly.  I guess the unknown is how long will carbo/taxol work?  No one really seems to know since not many melanoma patients are on it.

                                                                                        Thanks. 

                                                                                         

                                                                                        sjl
                                                                                        Participant

                                                                                          My husband's doctor said that some do get a durable response with this and that the average response is one year.  However, he has seen 3 years.  It seems that nothing works for a large percentage of people and of the group that a treatment does work for, some do better than others.  So if something is working for an individual, maybe that person will continue to do well.  I also believe that God does miracles so I just keep praying.

                                                                                          jcmp
                                                                                          Participant

                                                                                            Thanks so much for your reply.  It really helps to hear from someone who is in a similar situation. 

                                                                                            jcmp
                                                                                            Participant

                                                                                              Thanks so much for your reply.  It really helps to hear from someone who is in a similar situation. 

                                                                                              jcmp
                                                                                              Participant

                                                                                                Thanks so much for your reply.  It really helps to hear from someone who is in a similar situation. 

                                                                                                sjl
                                                                                                Participant

                                                                                                  My husband's doctor said that some do get a durable response with this and that the average response is one year.  However, he has seen 3 years.  It seems that nothing works for a large percentage of people and of the group that a treatment does work for, some do better than others.  So if something is working for an individual, maybe that person will continue to do well.  I also believe that God does miracles so I just keep praying.

                                                                                                  sjl
                                                                                                  Participant

                                                                                                    My husband's doctor said that some do get a durable response with this and that the average response is one year.  However, he has seen 3 years.  It seems that nothing works for a large percentage of people and of the group that a treatment does work for, some do better than others.  So if something is working for an individual, maybe that person will continue to do well.  I also believe that God does miracles so I just keep praying.

                                                                                                    sjl
                                                                                                    Participant

                                                                                                      My husband is doing well on carbo/taxol.  He was in pretty bad shape with very rapid tumor growth, so bad that one doctor  was very happy to see him about 8 weeks after treatment had begun because he didn't think he was goinig to make it. Thisis the only treatment he has had for melanoma other than surgery. After 2 rounds, his tumors had shrunk by 75% and after 2 more rounds they were still shrinking.  He just completed round 5 last week and has 5 more to go.  The doctor said he has seen a durable response on this regiman.  It works in about 15% of cases.     A lot of people are praying for my husband and we are praying that God will continue to work a miracle in him.  Good luck to you.

                                                                                                    jcmp
                                                                                                    Participant

                                                                                                      That's great news!  You just never know what will work.  There seems to be renewed interest in the combination chemotherapy drugs for some melanoma patients.  My husband has had three doses of carboplatin/taxol, and it appears to have slowed down his disease, which was rapidly progressing.  I saw a recent study with carboplatin/taxol/avastin, which had good results. 

                                                                                                       

                                                                                                      jcmp
                                                                                                      Participant

                                                                                                        That's great news!  You just never know what will work.  There seems to be renewed interest in the combination chemotherapy drugs for some melanoma patients.  My husband has had three doses of carboplatin/taxol, and it appears to have slowed down his disease, which was rapidly progressing.  I saw a recent study with carboplatin/taxol/avastin, which had good results. 

                                                                                                         

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