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Chemo success anyone?

Forums General Melanoma Community Chemo success anyone?

  • Post
    NYKaren
    Participant

      Hi everyone.

      I recently completed 6 weeks of Temodar and am going for PET scan tomorrow.  From the looks of things, I've had a partial response (so what's new?)

      I realize that chemo is usually a temporary measure, and we're looking for stabilization until I can get into an anti PD-1 trial.  You never know, though.  since I've partially responded then advanced on Ipi, IL-2 and radiation, who knows what might happen on chemo.

      Hi everyone.

      I recently completed 6 weeks of Temodar and am going for PET scan tomorrow.  From the looks of things, I've had a partial response (so what's new?)

      I realize that chemo is usually a temporary measure, and we're looking for stabilization until I can get into an anti PD-1 trial.  You never know, though.  since I've partially responded then advanced on Ipi, IL-2 and radiation, who knows what might happen on chemo.

      Dr. Wolchok has said that we'd talk about adding other chemo drug(s) or switching regimins, so i'd l'm looking for any positive experience with Temodar and other chemo drug combos or other combos that have worked, even temporarily for people.

      Thanks!

      karen

    Viewing 17 reply threads
    • Replies
        NYKaren
        Participant

          forgot to add:  Also interested in hearing about side-effects.  Thanks.

          NYKaren
          Participant

            forgot to add:  Also interested in hearing about side-effects.  Thanks.

            NYKaren
            Participant

              forgot to add:  Also interested in hearing about side-effects.  Thanks.

              killmel
              Participant

                Karen,

                You are very lucky if you did get a response with chemo.

                Based on this article, it explain "why" melanoma cells are resistant to chemo!

                http://www.sciencedaily.com/releases/2012/09/120917132351.htm

                Good Luck,

                Jimmy

                  NYKaren
                  Participant

                    I know, Jimmy.  I just posted that link on Facebook and added something like HURRY UP!

                    take care,

                    karen

                    NYKaren
                    Participant

                      I know, Jimmy.  I just posted that link on Facebook and added something like HURRY UP!

                      take care,

                      karen

                      NYKaren
                      Participant

                        I know, Jimmy.  I just posted that link on Facebook and added something like HURRY UP!

                        take care,

                        karen

                      killmel
                      Participant

                        Karen,

                        You are very lucky if you did get a response with chemo.

                        Based on this article, it explain "why" melanoma cells are resistant to chemo!

                        http://www.sciencedaily.com/releases/2012/09/120917132351.htm

                        Good Luck,

                        Jimmy

                        killmel
                        Participant

                          Karen,

                          You are very lucky if you did get a response with chemo.

                          Based on this article, it explain "why" melanoma cells are resistant to chemo!

                          http://www.sciencedaily.com/releases/2012/09/120917132351.htm

                          Good Luck,

                          Jimmy

                          sharmon
                          Participant

                            Most of us are waiting on and Anti pd 1 trial….  With that said, my husband Brent , has been on a Gsk MEK trial which includes Alimta (chemo Premexatred ) for 20 months and he is stable.  They added the chemo after he was on Mek by itself for 11 months and progressed just a little.  All together over 30 months and except for a few bumps he is still hanging in there.

                              LynnLuc
                              Participant

                                Moffitt has anti pd 1 trials open…

                                As far as Temodar I was on it from July 2009-March 2010 however they believe it stopped working in Dec or Jan. They told me at Mayo that it is expected to fail from 5-7 months because melanoma out smarts it and finds a way around it.

                                NYKaren
                                Participant
                                  Lynn, there are trials @ Sloan, too. It’s a matter of being eligible at the right time for the right trial Thanks for sharing about Temodar.
                                  Take care.
                                  NYKaren
                                  Participant
                                    Lynn, there are trials @ Sloan, too. It’s a matter of being eligible at the right time for the right trial Thanks for sharing about Temodar.
                                    Take care.
                                    NYKaren
                                    Participant
                                      Lynn, there are trials @ Sloan, too. It’s a matter of being eligible at the right time for the right trial Thanks for sharing about Temodar.
                                      Take care.
                                      LynnLuc
                                      Participant

                                        Moffitt has anti pd 1 trials open…

                                        As far as Temodar I was on it from July 2009-March 2010 however they believe it stopped working in Dec or Jan. They told me at Mayo that it is expected to fail from 5-7 months because melanoma out smarts it and finds a way around it.

                                        LynnLuc
                                        Participant

                                          Moffitt has anti pd 1 trials open…

                                          As far as Temodar I was on it from July 2009-March 2010 however they believe it stopped working in Dec or Jan. They told me at Mayo that it is expected to fail from 5-7 months because melanoma out smarts it and finds a way around it.

                                          NYKaren
                                          Participant
                                            Good to know. Thanks Sharmon.
                                            NYKaren
                                            Participant
                                              Good to know. Thanks Sharmon.
                                              NYKaren
                                              Participant
                                                Good to know. Thanks Sharmon.
                                              sharmon
                                              Participant

                                                Most of us are waiting on and Anti pd 1 trial….  With that said, my husband Brent , has been on a Gsk MEK trial which includes Alimta (chemo Premexatred ) for 20 months and he is stable.  They added the chemo after he was on Mek by itself for 11 months and progressed just a little.  All together over 30 months and except for a few bumps he is still hanging in there.

                                                sharmon
                                                Participant

                                                  Most of us are waiting on and Anti pd 1 trial….  With that said, my husband Brent , has been on a Gsk MEK trial which includes Alimta (chemo Premexatred ) for 20 months and he is stable.  They added the chemo after he was on Mek by itself for 11 months and progressed just a little.  All together over 30 months and except for a few bumps he is still hanging in there.

                                                  sjl
                                                  Participant

                                                    My husband is currently being treated with a combination of carboplatin and paclitaxol.  He's had an amazing response.  He has mucosal melanoma of the nasal cavity, stage 3c.  Because of a questionable lung nodule and the process of finding out what it is (a second primary lung cancer), no treatment was done after his surgery with clear margins back in early May.  Near the end of August, he woke up with a large lump and a chain of pea sized lumps on his neck.  The melanoma had taken off like wild fire and continued to grow quite visibly each day. They were huge.  Because it was so agressive something had to be done fast. so they went with chemo.  After the first treatment, I watched the tumors shrink as fast as they had grown.  The PA was amazed and said they don't usually see that kind of response.  After round two, everything we could see externally is gone.  We were told that they would use chemo until they could move onto something else but after the first treatment they said he may actually get a good response from this and be on "watch and see" after he's completed the treatments, that for some people it actually works.  We can only hope and pray.  As for side effects, he has done very well.  He missed work the second day after the first treatment because of fatigue and half of the third.  Since then, he has worked most of the time except for when he is at an appointment somewhere.  He had a little joint pain after the second treatment but it wasn't bad and didn't last long.  He's had a bit of neuropathy in his hands.  But overall, he feels fine and does his usual things. He goes for round 3 and will have scans and be restaged next week.  There's not a lot of options for him so I hope this works.  He's not eligible for clinical trials, can't take IL2, is BRAF and CKit negative.  Maybe yervoy if needed.  Good luck to you, and everyone.

                                                      NYKaren
                                                      Participant
                                                        Wow. That’s amazing. My Mel’s been so unusual, I can only hope for such a good response.
                                                        MeNDave
                                                        Participant

                                                          Dave had a good response to carbo/taxol also.  Started in April, and if you're looking for a bridge treatment until an anti-pd1 comes up, it's a viable choice.  Dave took the day after treatment off to rest, but worked full time still.  Side effects weren't too bad – although the fatigue can be rough, so you have to remember to rest when you're tired.

                                                          I hope all goes well for you πŸ™‚

                                                          Maria

                                                          MeNDave
                                                          Participant

                                                            Dave had a good response to carbo/taxol also.  Started in April, and if you're looking for a bridge treatment until an anti-pd1 comes up, it's a viable choice.  Dave took the day after treatment off to rest, but worked full time still.  Side effects weren't too bad – although the fatigue can be rough, so you have to remember to rest when you're tired.

                                                            I hope all goes well for you πŸ™‚

                                                            Maria

                                                            MeNDave
                                                            Participant

                                                              Dave had a good response to carbo/taxol also.  Started in April, and if you're looking for a bridge treatment until an anti-pd1 comes up, it's a viable choice.  Dave took the day after treatment off to rest, but worked full time still.  Side effects weren't too bad – although the fatigue can be rough, so you have to remember to rest when you're tired.

                                                              I hope all goes well for you πŸ™‚

                                                              Maria

                                                              NYKaren
                                                              Participant
                                                                Wow. That’s amazing. My Mel’s been so unusual, I can only hope for such a good response.
                                                                NYKaren
                                                                Participant
                                                                  Wow. That’s amazing. My Mel’s been so unusual, I can only hope for such a good response.
                                                                sjl
                                                                Participant

                                                                  My husband is currently being treated with a combination of carboplatin and paclitaxol.  He's had an amazing response.  He has mucosal melanoma of the nasal cavity, stage 3c.  Because of a questionable lung nodule and the process of finding out what it is (a second primary lung cancer), no treatment was done after his surgery with clear margins back in early May.  Near the end of August, he woke up with a large lump and a chain of pea sized lumps on his neck.  The melanoma had taken off like wild fire and continued to grow quite visibly each day. They were huge.  Because it was so agressive something had to be done fast. so they went with chemo.  After the first treatment, I watched the tumors shrink as fast as they had grown.  The PA was amazed and said they don't usually see that kind of response.  After round two, everything we could see externally is gone.  We were told that they would use chemo until they could move onto something else but after the first treatment they said he may actually get a good response from this and be on "watch and see" after he's completed the treatments, that for some people it actually works.  We can only hope and pray.  As for side effects, he has done very well.  He missed work the second day after the first treatment because of fatigue and half of the third.  Since then, he has worked most of the time except for when he is at an appointment somewhere.  He had a little joint pain after the second treatment but it wasn't bad and didn't last long.  He's had a bit of neuropathy in his hands.  But overall, he feels fine and does his usual things. He goes for round 3 and will have scans and be restaged next week.  There's not a lot of options for him so I hope this works.  He's not eligible for clinical trials, can't take IL2, is BRAF and CKit negative.  Maybe yervoy if needed.  Good luck to you, and everyone.

                                                                  sjl
                                                                  Participant

                                                                    My husband is currently being treated with a combination of carboplatin and paclitaxol.  He's had an amazing response.  He has mucosal melanoma of the nasal cavity, stage 3c.  Because of a questionable lung nodule and the process of finding out what it is (a second primary lung cancer), no treatment was done after his surgery with clear margins back in early May.  Near the end of August, he woke up with a large lump and a chain of pea sized lumps on his neck.  The melanoma had taken off like wild fire and continued to grow quite visibly each day. They were huge.  Because it was so agressive something had to be done fast. so they went with chemo.  After the first treatment, I watched the tumors shrink as fast as they had grown.  The PA was amazed and said they don't usually see that kind of response.  After round two, everything we could see externally is gone.  We were told that they would use chemo until they could move onto something else but after the first treatment they said he may actually get a good response from this and be on "watch and see" after he's completed the treatments, that for some people it actually works.  We can only hope and pray.  As for side effects, he has done very well.  He missed work the second day after the first treatment because of fatigue and half of the third.  Since then, he has worked most of the time except for when he is at an appointment somewhere.  He had a little joint pain after the second treatment but it wasn't bad and didn't last long.  He's had a bit of neuropathy in his hands.  But overall, he feels fine and does his usual things. He goes for round 3 and will have scans and be restaged next week.  There's not a lot of options for him so I hope this works.  He's not eligible for clinical trials, can't take IL2, is BRAF and CKit negative.  Maybe yervoy if needed.  Good luck to you, and everyone.

                                                                    shellebrownies
                                                                    Participant

                                                                      Karen,

                                                                      Don had a really good response to the Carbo/Taxol combination. I'm sure that without it we would have lost Don by the end of June instead of in November like we did. He responded really well for the first two months. 

                                                                      Don's mel specialist was shocked by the response he showed, said it was the biggest response he'd seen to chemo in his whole career. It made his emerging lung mets disappear entirely, shrank all the tumors in his liver about 50 percent and halted the progression of the lesions in his bones. 

                                                                      For side effects, Don had terrible problems with nausea and vomiting, moreso than the regular amount expected with chemotherapy. I don't know if this had anything to do with the amount or type of pain medication he was taking. We finally discovered that it seemed to be somewhat motion related and was prescribed a motion sickness patch he wore behind his ear. Poof! No more nausea. 

                                                                      I really hope that whatever you choose helps!

                                                                      Michelle

                                                                      shellebrownies
                                                                      Participant

                                                                        Karen,

                                                                        Don had a really good response to the Carbo/Taxol combination. I'm sure that without it we would have lost Don by the end of June instead of in November like we did. He responded really well for the first two months. 

                                                                        Don's mel specialist was shocked by the response he showed, said it was the biggest response he'd seen to chemo in his whole career. It made his emerging lung mets disappear entirely, shrank all the tumors in his liver about 50 percent and halted the progression of the lesions in his bones. 

                                                                        For side effects, Don had terrible problems with nausea and vomiting, moreso than the regular amount expected with chemotherapy. I don't know if this had anything to do with the amount or type of pain medication he was taking. We finally discovered that it seemed to be somewhat motion related and was prescribed a motion sickness patch he wore behind his ear. Poof! No more nausea. 

                                                                        I really hope that whatever you choose helps!

                                                                        Michelle

                                                                        shellebrownies
                                                                        Participant

                                                                          Karen,

                                                                          Don had a really good response to the Carbo/Taxol combination. I'm sure that without it we would have lost Don by the end of June instead of in November like we did. He responded really well for the first two months. 

                                                                          Don's mel specialist was shocked by the response he showed, said it was the biggest response he'd seen to chemo in his whole career. It made his emerging lung mets disappear entirely, shrank all the tumors in his liver about 50 percent and halted the progression of the lesions in his bones. 

                                                                          For side effects, Don had terrible problems with nausea and vomiting, moreso than the regular amount expected with chemotherapy. I don't know if this had anything to do with the amount or type of pain medication he was taking. We finally discovered that it seemed to be somewhat motion related and was prescribed a motion sickness patch he wore behind his ear. Poof! No more nausea. 

                                                                          I really hope that whatever you choose helps!

                                                                          Michelle

                                                                          NYKaren
                                                                          Participant
                                                                            Thank you Michelle. I so appreciate your input and good wishes. How are you doing?
                                                                            NYKaren
                                                                            Participant
                                                                              Thank you Michelle. I so appreciate your input and good wishes. How are you doing?
                                                                              NYKaren
                                                                              Participant
                                                                                Thank you Michelle. I so appreciate your input and good wishes. How are you doing?
                                                                                  shellebrownies
                                                                                  Participant

                                                                                    Karen,

                                                                                    All in all, I would say that we three are doing pretty well. Being open and honest with the kids about the realities we were facing back then really went a long way toward acceptance after Don's passing. 

                                                                                    For the most part, we have figured out our new normal. In the wake of Don being gone, the kids and I have been working hard at reconnecting with my husband's family (they live half a country away from us and we were sort of estranged from his family before Don got sick). Things have improved significantly between the two families, which I think is a blessing. In particular, I have been able to connect well with my mother in law and we have helped each other quite a bit.

                                                                                    We've had our ups and downs, of course. Don's birthday going by wasn't too bad, but yet the anniversary of the day we found out he had the cancer hit me really hard. September is a hard month for us because it is the month of our wedding anniversary as well as both kids' birthdays. Luckily those firsts have now passed by and I am feeling better again. 

                                                                                    The kids (now 15 and 16) have coped well in face of the loss of their dad. They have lots of extended family they could lean on, but for the most part have been all right without their help. 

                                                                                    And I have found that I am much stronger a person than I ever believed I could be. I have found that love and a healthy dose of humor goes a long way towards healing. 

                                                                                    I miss Don every day, of course, but sometimes things happen for a reason…and I am already seeing some of those small miracles.

                                                                                    Will certainly keep you in my thoughts and prayers. It's good to see familiar faces here still fighting! πŸ™‚

                                                                                    Michelle

                                                                                    NYKaren
                                                                                    Participant
                                                                                      Dear Michelle,

                                                                                      I’m glad you and the kids are doing okay. It’s not surprising to me how strong you are– I think you have been all along. It’s wonderful that you are becoming closer with Don’s family, I’m sure it means a lot to your kids… I know for mine (22 & 24), they’ve always been glad for extended family and as they’ve gotten older have developed relationships on their own with cousins, etc.

                                                                                      You are one terrific lady and I thank you for your support.

                                                                                      Take good care,
                                                                                      karen

                                                                                      NYKaren
                                                                                      Participant
                                                                                        Dear Michelle,

                                                                                        I’m glad you and the kids are doing okay. It’s not surprising to me how strong you are– I think you have been all along. It’s wonderful that you are becoming closer with Don’s family, I’m sure it means a lot to your kids… I know for mine (22 & 24), they’ve always been glad for extended family and as they’ve gotten older have developed relationships on their own with cousins, etc.

                                                                                        You are one terrific lady and I thank you for your support.

                                                                                        Take good care,
                                                                                        karen

                                                                                        NYKaren
                                                                                        Participant
                                                                                          Dear Michelle,

                                                                                          I’m glad you and the kids are doing okay. It’s not surprising to me how strong you are– I think you have been all along. It’s wonderful that you are becoming closer with Don’s family, I’m sure it means a lot to your kids… I know for mine (22 & 24), they’ve always been glad for extended family and as they’ve gotten older have developed relationships on their own with cousins, etc.

                                                                                          You are one terrific lady and I thank you for your support.

                                                                                          Take good care,
                                                                                          karen

                                                                                          NYKaren
                                                                                          Participant
                                                                                            Dear Michelle,

                                                                                            I’m glad you and the kids are doing okay. It’s not surprising to me how strong you are– I think you have been all along. It’s wonderful that you are becoming closer with Don’s family, I’m sure it means a lot to your kids… I know for mine (22 & 24), they’ve always been glad for extended family and as they’ve gotten older have developed relationships on their own with cousins, etc.

                                                                                            You are one terrific lady and I thank you for your support.

                                                                                            Take good care,
                                                                                            karen

                                                                                            MeNDave
                                                                                            Participant

                                                                                              I agree with Karen, it's nice to see you post Michelle.  I was hoping you were doing OK.  You were certainly a source of strength for me –

                                                                                              I'm also glad you find a new normal.  I'm still looking for mine, but getting there.

                                                                                               

                                                                                              MeNDave
                                                                                              Participant

                                                                                                I agree with Karen, it's nice to see you post Michelle.  I was hoping you were doing OK.  You were certainly a source of strength for me –

                                                                                                I'm also glad you find a new normal.  I'm still looking for mine, but getting there.

                                                                                                 

                                                                                                MeNDave
                                                                                                Participant

                                                                                                  I agree with Karen, it's nice to see you post Michelle.  I was hoping you were doing OK.  You were certainly a source of strength for me –

                                                                                                  I'm also glad you find a new normal.  I'm still looking for mine, but getting there.

                                                                                                   

                                                                                                  NYKaren
                                                                                                  Participant
                                                                                                    Dear Michelle,

                                                                                                    I’m glad you and the kids are doing okay. It’s not surprising to me how strong you are– I think you have been all along. It’s wonderful that you are becoming closer with Don’s family, I’m sure it means a lot to your kids… I know for mine (22 & 24), they’ve always been glad for extended family and as they’ve gotten older have developed relationships on their own with cousins, etc.

                                                                                                    You are one terrific lady and I thank you for your support.

                                                                                                    Take good care,
                                                                                                    karen

                                                                                                    NYKaren
                                                                                                    Participant
                                                                                                      Dear Michelle,

                                                                                                      I’m glad you and the kids are doing okay. It’s not surprising to me how strong you are– I think you have been all along. It’s wonderful that you are becoming closer with Don’s family, I’m sure it means a lot to your kids… I know for mine (22 & 24), they’ve always been glad for extended family and as they’ve gotten older have developed relationships on their own with cousins, etc.

                                                                                                      You are one terrific lady and I thank you for your support.

                                                                                                      Take good care,
                                                                                                      karen

                                                                                                      shellebrownies
                                                                                                      Participant

                                                                                                        Karen,

                                                                                                        All in all, I would say that we three are doing pretty well. Being open and honest with the kids about the realities we were facing back then really went a long way toward acceptance after Don's passing. 

                                                                                                        For the most part, we have figured out our new normal. In the wake of Don being gone, the kids and I have been working hard at reconnecting with my husband's family (they live half a country away from us and we were sort of estranged from his family before Don got sick). Things have improved significantly between the two families, which I think is a blessing. In particular, I have been able to connect well with my mother in law and we have helped each other quite a bit.

                                                                                                        We've had our ups and downs, of course. Don's birthday going by wasn't too bad, but yet the anniversary of the day we found out he had the cancer hit me really hard. September is a hard month for us because it is the month of our wedding anniversary as well as both kids' birthdays. Luckily those firsts have now passed by and I am feeling better again. 

                                                                                                        The kids (now 15 and 16) have coped well in face of the loss of their dad. They have lots of extended family they could lean on, but for the most part have been all right without their help. 

                                                                                                        And I have found that I am much stronger a person than I ever believed I could be. I have found that love and a healthy dose of humor goes a long way towards healing. 

                                                                                                        I miss Don every day, of course, but sometimes things happen for a reason…and I am already seeing some of those small miracles.

                                                                                                        Will certainly keep you in my thoughts and prayers. It's good to see familiar faces here still fighting! πŸ™‚

                                                                                                        Michelle

                                                                                                        shellebrownies
                                                                                                        Participant

                                                                                                          Karen,

                                                                                                          All in all, I would say that we three are doing pretty well. Being open and honest with the kids about the realities we were facing back then really went a long way toward acceptance after Don's passing. 

                                                                                                          For the most part, we have figured out our new normal. In the wake of Don being gone, the kids and I have been working hard at reconnecting with my husband's family (they live half a country away from us and we were sort of estranged from his family before Don got sick). Things have improved significantly between the two families, which I think is a blessing. In particular, I have been able to connect well with my mother in law and we have helped each other quite a bit.

                                                                                                          We've had our ups and downs, of course. Don's birthday going by wasn't too bad, but yet the anniversary of the day we found out he had the cancer hit me really hard. September is a hard month for us because it is the month of our wedding anniversary as well as both kids' birthdays. Luckily those firsts have now passed by and I am feeling better again. 

                                                                                                          The kids (now 15 and 16) have coped well in face of the loss of their dad. They have lots of extended family they could lean on, but for the most part have been all right without their help. 

                                                                                                          And I have found that I am much stronger a person than I ever believed I could be. I have found that love and a healthy dose of humor goes a long way towards healing. 

                                                                                                          I miss Don every day, of course, but sometimes things happen for a reason…and I am already seeing some of those small miracles.

                                                                                                          Will certainly keep you in my thoughts and prayers. It's good to see familiar faces here still fighting! πŸ™‚

                                                                                                          Michelle

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