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Not Comfortable with Nexavar/Carbo.
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Not Comfortable with Nexavar/Carbo.

› Forums › General Melanoma Community › Not Comfortable with Nexavar/Carbo.

  • Post
    • June 28, 2012 at 10:22 pm
    susanr
    Participant

      Hello everyone.  My Brother is Stage IV. Primary Acral/Foot. 1.5mm Dx. 2/2009.  He just finished two- six week rounds of Temador and three infusions of Abraxane.  Yervoy in 12/2011…seems to not be a responder. Not strong enough for Biochem.  Brain/spine/liver/other G.I organs clear. C kit and braf-negative.

      Hello everyone.  My Brother is Stage IV. Primary Acral/Foot. 1.5mm Dx. 2/2009.  He just finished two- six week rounds of Temador and three infusions of Abraxane.  Yervoy in 12/2011…seems to not be a responder. Not strong enough for Biochem.  Brain/spine/liver/other G.I organs clear. C kit and braf-negative.

      Started this regimen because mult. Pulm and abdominal mets/nodules,. along with mass in left pelvis.  had doctor appt. on Weds. and all is stable post Temodor and Abraxane except the left pelvic wall mass which is now bigger/huge…..wt. loss big but he does have an appetite and eats but not like he use to.  Doctor now started Nexavar and Carbo.  Told many patients have responded to this regimen… but when I research this combo….I am not too happy with results/outcome.  Is anyone on this now or have taken in the past.  I did back track posts on this forum and some have but nothing I have seen recently.  I see most of you on clinical trials/zelboraf/yervoy. Thanks for the help/advice/coments.

      Regards to all the fighters. 

      SusanR NY

    Viewing 8 reply threads
    • Replies
        • June 29, 2012 at 1:15 am
        WendyPam
        Participant

          Hi Susan,

          My Mom just started Carbo/Abraxane  combo. We just completed our second treatment. I have read a few interesting articles on this combo along with Avastin that I've asked our Dr to bring into the combo. We are trying for a response and stable disease until more Anti-pd1 trials open. My Mother is also Braf and C-kit negative with Mucosal Melanoma since Sept of 09. I haven't read much  on Nexavar, but I'm sure someone will have more information for you on the board. I think that so many of these chemo combinations are sister's to each other. I'm glad to see that your brother got some response to his treatment and hopefully the next round will help even more! Lots of love and postive thoughts to you and your family.

          Regards,

          Wendy

          • June 29, 2012 at 1:15 am
          WendyPam
          Participant

            Hi Susan,

            My Mom just started Carbo/Abraxane  combo. We just completed our second treatment. I have read a few interesting articles on this combo along with Avastin that I've asked our Dr to bring into the combo. We are trying for a response and stable disease until more Anti-pd1 trials open. My Mother is also Braf and C-kit negative with Mucosal Melanoma since Sept of 09. I haven't read much  on Nexavar, but I'm sure someone will have more information for you on the board. I think that so many of these chemo combinations are sister's to each other. I'm glad to see that your brother got some response to his treatment and hopefully the next round will help even more! Lots of love and postive thoughts to you and your family.

            Regards,

            Wendy

            • June 29, 2012 at 1:15 am
            WendyPam
            Participant

              Hi Susan,

              My Mom just started Carbo/Abraxane  combo. We just completed our second treatment. I have read a few interesting articles on this combo along with Avastin that I've asked our Dr to bring into the combo. We are trying for a response and stable disease until more Anti-pd1 trials open. My Mother is also Braf and C-kit negative with Mucosal Melanoma since Sept of 09. I haven't read much  on Nexavar, but I'm sure someone will have more information for you on the board. I think that so many of these chemo combinations are sister's to each other. I'm glad to see that your brother got some response to his treatment and hopefully the next round will help even more! Lots of love and postive thoughts to you and your family.

              Regards,

              Wendy

              • June 29, 2012 at 5:00 am
              WendyPam
              Participant

                Hi Susan,

                One question is Nexavar for Barf positive folks? I read that Nexavar aka Sorafenib was one of the first braf agent for melanoma. It's very confusing to me at times all the different names of drugs. I also like to learn about different combo to share with our Dr as well since my Mother is Braf negative like your brother.

                 

                Thanks!

                Wendy

                • June 29, 2012 at 5:00 am
                WendyPam
                Participant

                  Hi Susan,

                  One question is Nexavar for Barf positive folks? I read that Nexavar aka Sorafenib was one of the first braf agent for melanoma. It's very confusing to me at times all the different names of drugs. I also like to learn about different combo to share with our Dr as well since my Mother is Braf negative like your brother.

                   

                  Thanks!

                  Wendy

                    • June 29, 2012 at 9:44 pm
                    susanr
                    Participant

                      Hi Wendy,

                      I appreciate your post and regards for my brother.    He is seen by Dr. Pavlik at NYU.  The research she did with Nexavar/sorafenib showed that both c kit positive an negative pt's. responded quite well to the is drug.  She decided to take this approach with since she did research and knew the response. Your mom had mucosal mel.??  Dumb ? but exactly where ???  Dr. Pavlik said the patients with sinus and mucosal did good on nexavar.  Something to discuss w/ your mom's onc.  They gave him Abraxane and temodor because in thier research at nyu, they found the Abraxane helped other drugs work better.  Now I am not happy with the last PET/CT but It could be worse.  I am happt the brain, liver, spine and other vital oragans are still clear.  I am in the medical field so I know when brain and liver are involved…not good.

                      I looked at your post and do you live in Ft. Lauderdale ????  My Parents are in ft. LAuderdle.  I heard Cleveland Clinic in weston has a good Onc team for melaanoma. 

                      I hope this helps you..so please respond.  Keep us posted on your mom.  I have seen some posts that taxol/carbo/avastin have helped.  some onc's don't use avastin becasue of the "fake drug" that hit the U.S market.  I am going to look for the one wife of a pt. that posts a lot and her hubby had Carbo/taxol and he did very well on it.  I will repost and let me know if you get this.

                      Regards and keep fighting !!!!!!

                      SusanR-NY

                      • June 29, 2012 at 9:44 pm
                      susanr
                      Participant

                        Hi Wendy,

                        I appreciate your post and regards for my brother.    He is seen by Dr. Pavlik at NYU.  The research she did with Nexavar/sorafenib showed that both c kit positive an negative pt's. responded quite well to the is drug.  She decided to take this approach with since she did research and knew the response. Your mom had mucosal mel.??  Dumb ? but exactly where ???  Dr. Pavlik said the patients with sinus and mucosal did good on nexavar.  Something to discuss w/ your mom's onc.  They gave him Abraxane and temodor because in thier research at nyu, they found the Abraxane helped other drugs work better.  Now I am not happy with the last PET/CT but It could be worse.  I am happt the brain, liver, spine and other vital oragans are still clear.  I am in the medical field so I know when brain and liver are involved…not good.

                        I looked at your post and do you live in Ft. Lauderdale ????  My Parents are in ft. LAuderdle.  I heard Cleveland Clinic in weston has a good Onc team for melaanoma. 

                        I hope this helps you..so please respond.  Keep us posted on your mom.  I have seen some posts that taxol/carbo/avastin have helped.  some onc's don't use avastin becasue of the "fake drug" that hit the U.S market.  I am going to look for the one wife of a pt. that posts a lot and her hubby had Carbo/taxol and he did very well on it.  I will repost and let me know if you get this.

                        Regards and keep fighting !!!!!!

                        SusanR-NY

                        • June 30, 2012 at 3:32 am
                        WendyPam
                        Participant

                          Hi Susan,

                          I know that "meanddave" are on carbo/taxol and doing well. I really want to see my Mom on Avastin also. It's more of an insurance issue according to our Dr. I am going to call my Mom's insurance company on Monday and see.  I told him that we would pay our of pocket. Grrrr! I have no idea the prices of these drugs, It scares me after I opened my Mom's mail yesterday and her clinic billed the insurance company $10,500.00 for her first chemo treatment. If insurance doesn't cover it then we'll make it happen some way some how.  Our Dr hasn't even looked into this for us.  We have treatment 3 of cycle one on Monday.  I would like to have Avastin added in soon like cycle 2. I believe it's given every 2 weeks. Carbo on Day 1, Abraxane on Day 1,8,15. 

                          My Mother has spleen,liver, lung and outer stomach involvement. After first round of Yervoy stable for 8 months and re-induction stopped after 2 treatments due to colitis. I truly believe heavy steriods wiped out any hope of an effect and I'm sure didn't help with her progression. Her big progression of the liver was after steriods and the spleen getting larger. Just over 3 years at Stage IV with vular mucosal melanoma. Yeap, 1 in 4 million chances of this type, very rare, but all treated the same at Stage IV. 

                          I only read that Nexavar was a braf drug and saw nothing about c-kit. Yes, my mom is negative on both and it seems that everthing else that we have tested for. I'm waiting to hear from someone about doing genetic type of testing on her tumor slides to maybe see what so might respond to. I have to say today she had a pretty good day when I expected a bad day 4 days post treatment. What I mean as bad day I mean sleeping most of the day. No pain or vomit.

                            I think we went with Abraxane being less toxic then Taxol. Thanks for looking for the other post for me. I will let you know how my mom does on her first scans. We are trying to get her onto an Anti-pd1 trial when they open. I keep your brother close to my heart and prayer that this combo is the one for him.

                          Yes, I live in East Ft.Lauderdale in Lauderdale-by-the-Sea.

                           

                          Wendy

                          • June 30, 2012 at 3:32 am
                          WendyPam
                          Participant

                            Hi Susan,

                            I know that "meanddave" are on carbo/taxol and doing well. I really want to see my Mom on Avastin also. It's more of an insurance issue according to our Dr. I am going to call my Mom's insurance company on Monday and see.  I told him that we would pay our of pocket. Grrrr! I have no idea the prices of these drugs, It scares me after I opened my Mom's mail yesterday and her clinic billed the insurance company $10,500.00 for her first chemo treatment. If insurance doesn't cover it then we'll make it happen some way some how.  Our Dr hasn't even looked into this for us.  We have treatment 3 of cycle one on Monday.  I would like to have Avastin added in soon like cycle 2. I believe it's given every 2 weeks. Carbo on Day 1, Abraxane on Day 1,8,15. 

                            My Mother has spleen,liver, lung and outer stomach involvement. After first round of Yervoy stable for 8 months and re-induction stopped after 2 treatments due to colitis. I truly believe heavy steriods wiped out any hope of an effect and I'm sure didn't help with her progression. Her big progression of the liver was after steriods and the spleen getting larger. Just over 3 years at Stage IV with vular mucosal melanoma. Yeap, 1 in 4 million chances of this type, very rare, but all treated the same at Stage IV. 

                            I only read that Nexavar was a braf drug and saw nothing about c-kit. Yes, my mom is negative on both and it seems that everthing else that we have tested for. I'm waiting to hear from someone about doing genetic type of testing on her tumor slides to maybe see what so might respond to. I have to say today she had a pretty good day when I expected a bad day 4 days post treatment. What I mean as bad day I mean sleeping most of the day. No pain or vomit.

                              I think we went with Abraxane being less toxic then Taxol. Thanks for looking for the other post for me. I will let you know how my mom does on her first scans. We are trying to get her onto an Anti-pd1 trial when they open. I keep your brother close to my heart and prayer that this combo is the one for him.

                            Yes, I live in East Ft.Lauderdale in Lauderdale-by-the-Sea.

                             

                            Wendy

                            • June 30, 2012 at 3:32 am
                            WendyPam
                            Participant

                              Hi Susan,

                              I know that "meanddave" are on carbo/taxol and doing well. I really want to see my Mom on Avastin also. It's more of an insurance issue according to our Dr. I am going to call my Mom's insurance company on Monday and see.  I told him that we would pay our of pocket. Grrrr! I have no idea the prices of these drugs, It scares me after I opened my Mom's mail yesterday and her clinic billed the insurance company $10,500.00 for her first chemo treatment. If insurance doesn't cover it then we'll make it happen some way some how.  Our Dr hasn't even looked into this for us.  We have treatment 3 of cycle one on Monday.  I would like to have Avastin added in soon like cycle 2. I believe it's given every 2 weeks. Carbo on Day 1, Abraxane on Day 1,8,15. 

                              My Mother has spleen,liver, lung and outer stomach involvement. After first round of Yervoy stable for 8 months and re-induction stopped after 2 treatments due to colitis. I truly believe heavy steriods wiped out any hope of an effect and I'm sure didn't help with her progression. Her big progression of the liver was after steriods and the spleen getting larger. Just over 3 years at Stage IV with vular mucosal melanoma. Yeap, 1 in 4 million chances of this type, very rare, but all treated the same at Stage IV. 

                              I only read that Nexavar was a braf drug and saw nothing about c-kit. Yes, my mom is negative on both and it seems that everthing else that we have tested for. I'm waiting to hear from someone about doing genetic type of testing on her tumor slides to maybe see what so might respond to. I have to say today she had a pretty good day when I expected a bad day 4 days post treatment. What I mean as bad day I mean sleeping most of the day. No pain or vomit.

                                I think we went with Abraxane being less toxic then Taxol. Thanks for looking for the other post for me. I will let you know how my mom does on her first scans. We are trying to get her onto an Anti-pd1 trial when they open. I keep your brother close to my heart and prayer that this combo is the one for him.

                              Yes, I live in East Ft.Lauderdale in Lauderdale-by-the-Sea.

                               

                              Wendy

                              • June 30, 2012 at 10:19 pm
                              susanr
                              Participant

                                Wendy,

                                Yes she is the wife of Dave.  I looked their name up.  Like I said to Eileen…I don't see too many of the patient's on this forum on chemo.  If I were you…Absolutely get your mom tested for everything.  Speak to the financial reps. at the hopsital where your mom is treated to let them help you for expenses/finance.  Is your doctor against Avastin ???

                                Maybe he wants to consider it at a later time in the regimen.  Now, I am no chemo/onc/expert…this was a ? I wanted to post on the forum…I heard that it is not good to use so many drugs up front…if treatment fails..you don't know which drug it was and there may be some type of "resistance" that can develop and then that drug is not an option later on.

                                My brother did Abraxane every 3 weeks.  He had his first carbo infusion weds. and it will still be the same..every 3 weeks.

                                He did temodor daily for 6 weeks, had a 2 week break then another daily dose for six weeks.  I see so many patient's take it different than he did.  He did well with the chemo but had the issues of constipation, hair loss.  He lost about 35 lbs becasue of this left pelvic mass that is big.  He was told Abraxane is reasonably tolerated.  the fatigue will occur…keep her nutrition up.  I will look for your posts about mom.  My thoughts and prayers are with her and the rest of us on this forum……

                                 

                                Regards

                                Susan NY

                                • June 30, 2012 at 10:19 pm
                                susanr
                                Participant

                                  Wendy,

                                  Yes she is the wife of Dave.  I looked their name up.  Like I said to Eileen…I don't see too many of the patient's on this forum on chemo.  If I were you…Absolutely get your mom tested for everything.  Speak to the financial reps. at the hopsital where your mom is treated to let them help you for expenses/finance.  Is your doctor against Avastin ???

                                  Maybe he wants to consider it at a later time in the regimen.  Now, I am no chemo/onc/expert…this was a ? I wanted to post on the forum…I heard that it is not good to use so many drugs up front…if treatment fails..you don't know which drug it was and there may be some type of "resistance" that can develop and then that drug is not an option later on.

                                  My brother did Abraxane every 3 weeks.  He had his first carbo infusion weds. and it will still be the same..every 3 weeks.

                                  He did temodor daily for 6 weeks, had a 2 week break then another daily dose for six weeks.  I see so many patient's take it different than he did.  He did well with the chemo but had the issues of constipation, hair loss.  He lost about 35 lbs becasue of this left pelvic mass that is big.  He was told Abraxane is reasonably tolerated.  the fatigue will occur…keep her nutrition up.  I will look for your posts about mom.  My thoughts and prayers are with her and the rest of us on this forum……

                                   

                                  Regards

                                  Susan NY

                                  • June 30, 2012 at 10:19 pm
                                  susanr
                                  Participant

                                    Wendy,

                                    Yes she is the wife of Dave.  I looked their name up.  Like I said to Eileen…I don't see too many of the patient's on this forum on chemo.  If I were you…Absolutely get your mom tested for everything.  Speak to the financial reps. at the hopsital where your mom is treated to let them help you for expenses/finance.  Is your doctor against Avastin ???

                                    Maybe he wants to consider it at a later time in the regimen.  Now, I am no chemo/onc/expert…this was a ? I wanted to post on the forum…I heard that it is not good to use so many drugs up front…if treatment fails..you don't know which drug it was and there may be some type of "resistance" that can develop and then that drug is not an option later on.

                                    My brother did Abraxane every 3 weeks.  He had his first carbo infusion weds. and it will still be the same..every 3 weeks.

                                    He did temodor daily for 6 weeks, had a 2 week break then another daily dose for six weeks.  I see so many patient's take it different than he did.  He did well with the chemo but had the issues of constipation, hair loss.  He lost about 35 lbs becasue of this left pelvic mass that is big.  He was told Abraxane is reasonably tolerated.  the fatigue will occur…keep her nutrition up.  I will look for your posts about mom.  My thoughts and prayers are with her and the rest of us on this forum……

                                     

                                    Regards

                                    Susan NY

                                    • June 29, 2012 at 9:44 pm
                                    susanr
                                    Participant

                                      Hi Wendy,

                                      I appreciate your post and regards for my brother.    He is seen by Dr. Pavlik at NYU.  The research she did with Nexavar/sorafenib showed that both c kit positive an negative pt's. responded quite well to the is drug.  She decided to take this approach with since she did research and knew the response. Your mom had mucosal mel.??  Dumb ? but exactly where ???  Dr. Pavlik said the patients with sinus and mucosal did good on nexavar.  Something to discuss w/ your mom's onc.  They gave him Abraxane and temodor because in thier research at nyu, they found the Abraxane helped other drugs work better.  Now I am not happy with the last PET/CT but It could be worse.  I am happt the brain, liver, spine and other vital oragans are still clear.  I am in the medical field so I know when brain and liver are involved…not good.

                                      I looked at your post and do you live in Ft. Lauderdale ????  My Parents are in ft. LAuderdle.  I heard Cleveland Clinic in weston has a good Onc team for melaanoma. 

                                      I hope this helps you..so please respond.  Keep us posted on your mom.  I have seen some posts that taxol/carbo/avastin have helped.  some onc's don't use avastin becasue of the "fake drug" that hit the U.S market.  I am going to look for the one wife of a pt. that posts a lot and her hubby had Carbo/taxol and he did very well on it.  I will repost and let me know if you get this.

                                      Regards and keep fighting !!!!!!

                                      SusanR-NY

                                    • June 29, 2012 at 5:00 am
                                    WendyPam
                                    Participant

                                      Hi Susan,

                                      One question is Nexavar for Barf positive folks? I read that Nexavar aka Sorafenib was one of the first braf agent for melanoma. It's very confusing to me at times all the different names of drugs. I also like to learn about different combo to share with our Dr as well since my Mother is Braf negative like your brother.

                                       

                                      Thanks!

                                      Wendy

                                      • June 30, 2012 at 6:47 am
                                      Eileen L
                                      Participant
                                        I was on Nexavar for over four years and did very well on it until February, 2012. Started treatment with ten rounds of carbo/taxol coupled with the Nexavar then continued with the Nexavar. Some of my tumors totally disappeared, others shrunk and where stable until February of this year. I am Braf positive however.

                                        Nexavar was in a Phase 3 trial when I was put on it that was stopped because so few of us were responding. For a handful of folks the drug did work, I was one of the lucky ones! Not heard that it was ever figured out why those of us who responded did.

                                        Eileen L

                                        • June 30, 2012 at 6:47 am
                                        Eileen L
                                        Participant
                                          I was on Nexavar for over four years and did very well on it until February, 2012. Started treatment with ten rounds of carbo/taxol coupled with the Nexavar then continued with the Nexavar. Some of my tumors totally disappeared, others shrunk and where stable until February of this year. I am Braf positive however.

                                          Nexavar was in a Phase 3 trial when I was put on it that was stopped because so few of us were responding. For a handful of folks the drug did work, I was one of the lucky ones! Not heard that it was ever figured out why those of us who responded did.

                                          Eileen L

                                          • June 30, 2012 at 6:47 am
                                          Eileen L
                                          Participant
                                            I was on Nexavar for over four years and did very well on it until February, 2012. Started treatment with ten rounds of carbo/taxol coupled with the Nexavar then continued with the Nexavar. Some of my tumors totally disappeared, others shrunk and where stable until February of this year. I am Braf positive however.

                                            Nexavar was in a Phase 3 trial when I was put on it that was stopped because so few of us were responding. For a handful of folks the drug did work, I was one of the lucky ones! Not heard that it was ever figured out why those of us who responded did.

                                            Eileen L

                                              • June 30, 2012 at 10:01 pm
                                              susanr
                                              Participant

                                                Thanks Eileen. I appreciate your response/post.    I hope your surgery goes well and please let everyone know how you are.  I will keep a look out for you.  You are right how nobody has a direct answer on why and how this drug will help or why it worked.  Have to put my trust in the doctor and hope all goes well.  I don't see too many patients posted on this forum who are on this or chemo in general.  funny how the docs seem to make their "potion " sometimes.

                                                 

                                                Keep Fighting.

                                                Susan R NY

                                                • June 30, 2012 at 10:01 pm
                                                susanr
                                                Participant

                                                  Thanks Eileen. I appreciate your response/post.    I hope your surgery goes well and please let everyone know how you are.  I will keep a look out for you.  You are right how nobody has a direct answer on why and how this drug will help or why it worked.  Have to put my trust in the doctor and hope all goes well.  I don't see too many patients posted on this forum who are on this or chemo in general.  funny how the docs seem to make their "potion " sometimes.

                                                   

                                                  Keep Fighting.

                                                  Susan R NY

                                                  • June 30, 2012 at 10:01 pm
                                                  susanr
                                                  Participant

                                                    Thanks Eileen. I appreciate your response/post.    I hope your surgery goes well and please let everyone know how you are.  I will keep a look out for you.  You are right how nobody has a direct answer on why and how this drug will help or why it worked.  Have to put my trust in the doctor and hope all goes well.  I don't see too many patients posted on this forum who are on this or chemo in general.  funny how the docs seem to make their "potion " sometimes.

                                                     

                                                    Keep Fighting.

                                                    Susan R NY

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