The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Officially responding to Carbo/Taxol…at least for now

Forums General Melanoma Community Officially responding to Carbo/Taxol…at least for now

  • Post
    shellebrownies
    Participant

      Just got back from Don's appointment with Dr. Lawrence. I just spent 1/2 hour writing out specifics of his response only to have the board eat it, so I am going to do this more abridged this time. wink

      Dr. Lawrence called it "the best response to chemotherapy I've ever seen". He said it was the kind of response he has seen only with BRAF inhibitors.

      Here's the down-n-dirty version of the results:

      Just got back from Don's appointment with Dr. Lawrence. I just spent 1/2 hour writing out specifics of his response only to have the board eat it, so I am going to do this more abridged this time. wink

      Dr. Lawrence called it "the best response to chemotherapy I've ever seen". He said it was the kind of response he has seen only with BRAF inhibitors.

      Here's the down-n-dirty version of the results:

      LDH: Down again to 268 from 388 last week. 

      Lungs: Down from innumerable nodules up to 1cm in size to 4 (four) nodules: 4mm, 3mm, 2mm and 2mm respectively.

      Tumor under right arm: Down from 10.4cm X 10.2cm to 2.7cm X 2.2cm. 2 small tumors in right chest wall same or slightly smaller at 6mm and 3mm respectively.

      Liver: Still have innumerable lesions, but they are better defined and smaller in size. Largest lesion came down from 5.2cm to 2.6cm in size.

      Bones: Results a little more hazy as there were mentions of "new" lesions that Dr. Lawrence doesn't actually think are new. (I think he's right, as some of the "new" ones were mentioned in an MRI of Don's spine down at Brigham and Women's hospital done in May) However, the fact that Don is taking 25% of the pain medicine he was 5 weeks ago certainly points to some improvement in this area. There was mention that at least 2 lesions seen appeared to be responding to  treatment. 

      Brain: Scan clean for brain; shows some signs of possible small bone lesions in skull (not new).

       

      Plan of action for now is to continue chemo for another cycle and will re-evaluate in a few weeks. Plan B (when we get there) was proposed to be the Compassionate Use PLX4032 trial. Dr. Lawrence wants to have Don sign paperwork now so they can send the tissue sample to Roche for testing (they require testing it themselves instead of taking result from previous test…and we know it takes a couple of weeks for results).

       

      I know I should be thrilled with the results–and I am–but I must admit that I was hoping there would be less lesions in his liver. 

      Michelle, wife of Don

    Viewing 17 reply threads
    • Replies
        Lisa13
        Participant

          Michelle,

          This is wonderful news!  For all those people who say chemo doesn't work, Don is proof that it does.  I know that you wish there were less lesions in his liver, but the fact is, the ones he has are now smaller, so the next round could show more improvement.  Don't give up believing!

          If Don is B-RAF, couldn't he do that new drug (the one that starts with a "V")?

          I have my second dacarbazine treatment tomorrow. Did Don find the chemo side effects got worse the second time he did it?

          Lisa

           

           

          Lisa13
          Participant

            Michelle,

            This is wonderful news!  For all those people who say chemo doesn't work, Don is proof that it does.  I know that you wish there were less lesions in his liver, but the fact is, the ones he has are now smaller, so the next round could show more improvement.  Don't give up believing!

            If Don is B-RAF, couldn't he do that new drug (the one that starts with a "V")?

            I have my second dacarbazine treatment tomorrow. Did Don find the chemo side effects got worse the second time he did it?

            Lisa

             

             

              shellebrownies
              Participant

                Lisa,

                Vemurafenib and PLX4032 are one and the same, so that is what he would be doing. smiley

                And, yes, Don did find he had more side effects the second time around (body aches especially, but that seems to be specific to the Taxol).  However, that will vary greatly depending on the specific drugs used, so that may not be the case with you. (And I am hoping it isn't!)

                Still, even with the increase in symptoms, he is much better than he was, so it is certainly worth it.

                I will be hoping that you will respond to your chemo also!

                Michelle

                shellebrownies
                Participant

                  Lisa,

                  Vemurafenib and PLX4032 are one and the same, so that is what he would be doing. smiley

                  And, yes, Don did find he had more side effects the second time around (body aches especially, but that seems to be specific to the Taxol).  However, that will vary greatly depending on the specific drugs used, so that may not be the case with you. (And I am hoping it isn't!)

                  Still, even with the increase in symptoms, he is much better than he was, so it is certainly worth it.

                  I will be hoping that you will respond to your chemo also!

                  Michelle

                Carmon in NM
                Participant

                  That is so wonderful! I did six infusions of carbo/taxol plus temodar and after the first infusion the lesion on my adrenal gland had shrunk more than 50% and after each additional infusion it shrank more until it was gone after the sixth. I hope so much that it goes the same way with Don for as long as he is on it!

                  Carmon in NM
                  Participant

                    That is so wonderful! I did six infusions of carbo/taxol plus temodar and after the first infusion the lesion on my adrenal gland had shrunk more than 50% and after each additional infusion it shrank more until it was gone after the sixth. I hope so much that it goes the same way with Don for as long as he is on it!

                      NYKaren
                      Participant

                        That's great news, Michelle.  I've been following your postings, and I'm so glad to read this one.

                        NYKaren
                        Participant

                          That's great news, Michelle.  I've been following your postings, and I'm so glad to read this one.

                          shellebrownies
                          Participant

                            Thanks, Karen. I hope your Yervoy treatment is going well?

                            Michelle

                            shellebrownies
                            Participant

                              Thanks, Karen. I hope your Yervoy treatment is going well?

                              Michelle

                              shellebrownies
                              Participant

                                Carmon,

                                Your story was what has inspired us. Just knowing it was possible to go NED has meant so much and has kept us with hope during his treatments. We are going into the next round on Monday hoping that he will respond for several more cycles yet!

                                Michelle

                                shellebrownies
                                Participant

                                  Carmon,

                                  Your story was what has inspired us. Just knowing it was possible to go NED has meant so much and has kept us with hope during his treatments. We are going into the next round on Monday hoping that he will respond for several more cycles yet!

                                  Michelle

                                Carol Taylor
                                Participant

                                  Michelle,

                                  I understand what you were hoping for, but still, I mean I look and I see miracles! All numbers and measurements are down (unless I misunderstood something which is possible)…but what has me excited is his pain is DOWN so much!! a 25% reduction in pain meds sounds significant to me.

                                  Hang on to all the good and positive you can. I'm so thrilled that what shouldn't have worked like this…is! Don may just be teaching the medical & research world something. Never give up comes to mind.  Thanks so much for keeping us posted. Don's one blessed man to have you in is corner and as his advocate.

                                  Oh Lord, thank You for this great mercy. Please keep opening doors that need opening for Don and please bring Michelle what her soul needs. Thank You. Amen.

                                  Grace and peace,

                                  Carol

                                  Carol Taylor
                                  Participant

                                    Michelle,

                                    I understand what you were hoping for, but still, I mean I look and I see miracles! All numbers and measurements are down (unless I misunderstood something which is possible)…but what has me excited is his pain is DOWN so much!! a 25% reduction in pain meds sounds significant to me.

                                    Hang on to all the good and positive you can. I'm so thrilled that what shouldn't have worked like this…is! Don may just be teaching the medical & research world something. Never give up comes to mind.  Thanks so much for keeping us posted. Don's one blessed man to have you in is corner and as his advocate.

                                    Oh Lord, thank You for this great mercy. Please keep opening doors that need opening for Don and please bring Michelle what her soul needs. Thank You. Amen.

                                    Grace and peace,

                                    Carol

                                      shellebrownies
                                      Participant

                                        Carol,

                                        I know for sure that Don's response is a miracle. I feel like that every day. And I know it was unrealistic of me to have hoped his liver mets would have disappeared already; it's the fear in me talking, because those worry me a lot.

                                        And Carol, his pain meds are not 25% less than they were; he is taking one quarter of the pain medicine he was taking before! Actually, less than that now; they are lowering the amount AGAIN. He will now be down to 2.5mg of methadone twice a day. He started this journey at 10mg three times a day.

                                        Thanks so much for your support and prayers. I admit I always look forward to reading them in your posts. : )

                                        Michelle

                                        Carol Taylor
                                        Participant

                                          HA! I told you, Michelle, it was possible that I was wrong about how I read your numbers! (math is a four-letter word for me)

                                          I'm glad if I was wrong that you got to smile as you set me straight. What I thought sounded pretty good is actually tremendous! Love hallelujah moments!
                                           

                                          I hope you & Don are doing some celebrating!

                                          Grace and peace,

                                          Carol

                                          Carol Taylor
                                          Participant

                                            HA! I told you, Michelle, it was possible that I was wrong about how I read your numbers! (math is a four-letter word for me)

                                            I'm glad if I was wrong that you got to smile as you set me straight. What I thought sounded pretty good is actually tremendous! Love hallelujah moments!
                                             

                                            I hope you & Don are doing some celebrating!

                                            Grace and peace,

                                            Carol

                                            shellebrownies
                                            Participant

                                              Carol,

                                              I know for sure that Don's response is a miracle. I feel like that every day. And I know it was unrealistic of me to have hoped his liver mets would have disappeared already; it's the fear in me talking, because those worry me a lot.

                                              And Carol, his pain meds are not 25% less than they were; he is taking one quarter of the pain medicine he was taking before! Actually, less than that now; they are lowering the amount AGAIN. He will now be down to 2.5mg of methadone twice a day. He started this journey at 10mg three times a day.

                                              Thanks so much for your support and prayers. I admit I always look forward to reading them in your posts. : )

                                              Michelle

                                            Dynasysman
                                            Participant

                                              It's fine to keep wanting more, but progress is a good thing.

                                              We're all pulling for you and Don.

                                              Dynasysman
                                              Participant

                                                It's fine to keep wanting more, but progress is a good thing.

                                                We're all pulling for you and Don.

                                                  MariaH
                                                  Participant

                                                    Just wanted to chime in, any reduction is good!  A friend of ours went this route, and when the chemo stopped working he went the way of B-RAF.  He is doing very good now – massive reduction in all tumors.  Chemo as a first line isn't a bad idea – it does work for some people.  And at least you have other treatments to fall back on.  This is probably the route Dave will take – so I am so happy it is working well for him!

                                                    All the best to both of you…

                                                    shellebrownies
                                                    Participant

                                                      Maria, 

                                                      That other post was meant for Dynasyman, but yours popped up in the middle! LOL

                                                      While I am glad that he still has BRAF as an option, I am still hoping that the chemo will work for several more sessions!

                                                      Thanks again for your kind reply.

                                                      Michelle

                                                      shellebrownies
                                                      Participant

                                                        Maria, 

                                                        That other post was meant for Dynasyman, but yours popped up in the middle! LOL

                                                        While I am glad that he still has BRAF as an option, I am still hoping that the chemo will work for several more sessions!

                                                        Thanks again for your kind reply.

                                                        Michelle

                                                        MariaH
                                                        Participant

                                                          Just wanted to chime in, any reduction is good!  A friend of ours went this route, and when the chemo stopped working he went the way of B-RAF.  He is doing very good now – massive reduction in all tumors.  Chemo as a first line isn't a bad idea – it does work for some people.  And at least you have other treatments to fall back on.  This is probably the route Dave will take – so I am so happy it is working well for him!

                                                          All the best to both of you…

                                                          shellebrownies
                                                          Participant

                                                            Thanks! I was glad to hear you had made some headway with your case as well. Will be looking forward to your next update. : )

                                                            Michelle

                                                            shellebrownies
                                                            Participant

                                                              Thanks! I was glad to hear you had made some headway with your case as well. Will be looking forward to your next update. : )

                                                              Michelle

                                                            lhaley
                                                            Participant

                                                              Don's results are great!!  I totally understand where you are coming from.  The two of you have been through so much, of course you want the best results possible.  

                                                              Just keep remembering where Don was and how far he has come!  Totally remarkable news!! 

                                                              Please keep letting us know!

                                                              Linda

                                                              Stage IV 5 years

                                                              lhaley
                                                              Participant

                                                                Don's results are great!!  I totally understand where you are coming from.  The two of you have been through so much, of course you want the best results possible.  

                                                                Just keep remembering where Don was and how far he has come!  Totally remarkable news!! 

                                                                Please keep letting us know!

                                                                Linda

                                                                Stage IV 5 years

                                                                FormerCaregiver
                                                                Participant

                                                                  Michelle, it is really encouraging that Don is responding so well to the chemo! However,
                                                                  as you have hinted his liver lesions remain a concern.

                                                                  At the moment, I think it is important to monitor the liver mets closely because they can
                                                                  have a big influence on how well his system can process many drugs. So, let's hope that
                                                                  they will continue to shrink and eventually disappear!

                                                                  There is a procedure called transarterial chemoembolization where chemo is delivered
                                                                  directly to the liver in an attempt to reduce toxicity. Perhaps you could ask Dr Lawrence
                                                                  for his opinion about it?

                                                                  Take care

                                                                  Frank from Australia

                                                                  FormerCaregiver
                                                                  Participant

                                                                    Michelle, it is really encouraging that Don is responding so well to the chemo! However,
                                                                    as you have hinted his liver lesions remain a concern.

                                                                    At the moment, I think it is important to monitor the liver mets closely because they can
                                                                    have a big influence on how well his system can process many drugs. So, let's hope that
                                                                    they will continue to shrink and eventually disappear!

                                                                    There is a procedure called transarterial chemoembolization where chemo is delivered
                                                                    directly to the liver in an attempt to reduce toxicity. Perhaps you could ask Dr Lawrence
                                                                    for his opinion about it?

                                                                    Take care

                                                                    Frank from Australia

                                                                    boot2aboot
                                                                    Participant

                                                                      Michelle,

                                                                      it is strange that Lisa, Don and me who have aggressive mel seem to be treated with chemo instead of immunotherapy…i am getting vinblastine, cisplatin and decarbozine together and i have to tell you that i feel like the shit of life right now…i wonder how Don is taking it…the liver mets scare me…but  the fact that hisLactate Hydrogenase levels are going down is indeed good news…how is his ALTs?

                                                                      i just hope Lisa, Shari and i can respond as well…

                                                                       

                                                                      I am kinda bummed that we are washed out for thirty days from studies that combine ipi with chemo drugs…http://www.mskcc.org/mskcc/html/14327.cfm to tell you the truth …i don't think my body could do the combo right now…ahh what the heck…if it doesn't kill me it might cure me…i am a tyrant on my chemo ward…every hour i call my doctors office and demand my frakkin braf results,,,i get real bitchy when lazy nurses want to leave my needle port in and make me sit in a chair instead of giving me a bed…5 weeks and waiting for braf…i feel i need to be a total bitch to get the right to maybe have a chance…i am glad you found lawrence and totally trust him…i don't trust any onc anymore…

                                                                      boots

                                                                        Lisa13
                                                                        Participant

                                                                          Hi Boots,

                                                                          In Canada, first line treatment has to be chemo, so I was a bit disappointed and worried. Since my melanoma has spread, it seems to be growing slowly since April and because of my low turmour burden,my onc. said the dacarbzine shows more activity under these conditions. I had 2 bad days but the rest of the time, I havn't felt like I've been on chemo. Today is my next treatment, so we'll see how it goes. Scans is 2 weeks!

                                                                          Boots, I wish you the best of luck with chemo and hope you have a response to it. Don's story as well as other chemo champs prove that this stuff can work sometimes. 

                                                                          Lisa

                                                                          Lisa13
                                                                          Participant

                                                                            Hi Boots,

                                                                            In Canada, first line treatment has to be chemo, so I was a bit disappointed and worried. Since my melanoma has spread, it seems to be growing slowly since April and because of my low turmour burden,my onc. said the dacarbzine shows more activity under these conditions. I had 2 bad days but the rest of the time, I havn't felt like I've been on chemo. Today is my next treatment, so we'll see how it goes. Scans is 2 weeks!

                                                                            Boots, I wish you the best of luck with chemo and hope you have a response to it. Don's story as well as other chemo champs prove that this stuff can work sometimes. 

                                                                            Lisa

                                                                          boot2aboot
                                                                          Participant

                                                                            Michelle,

                                                                            it is strange that Lisa, Don and me who have aggressive mel seem to be treated with chemo instead of immunotherapy…i am getting vinblastine, cisplatin and decarbozine together and i have to tell you that i feel like the shit of life right now…i wonder how Don is taking it…the liver mets scare me…but  the fact that hisLactate Hydrogenase levels are going down is indeed good news…how is his ALTs?

                                                                            i just hope Lisa, Shari and i can respond as well…

                                                                             

                                                                            I am kinda bummed that we are washed out for thirty days from studies that combine ipi with chemo drugs…http://www.mskcc.org/mskcc/html/14327.cfm to tell you the truth …i don't think my body could do the combo right now…ahh what the heck…if it doesn't kill me it might cure me…i am a tyrant on my chemo ward…every hour i call my doctors office and demand my frakkin braf results,,,i get real bitchy when lazy nurses want to leave my needle port in and make me sit in a chair instead of giving me a bed…5 weeks and waiting for braf…i feel i need to be a total bitch to get the right to maybe have a chance…i am glad you found lawrence and totally trust him…i don't trust any onc anymore…

                                                                            boots

                                                                            Banu
                                                                            Participant

                                                                              Hi Michelle,

                                                                              I am so happy for you and Don. You are a great inspiration. I will keep you in my prayers.

                                                                              Banu

                                                                              Banu
                                                                              Participant

                                                                                Hi Michelle,

                                                                                I am so happy for you and Don. You are a great inspiration. I will keep you in my prayers.

                                                                                Banu

                                                                                Banu
                                                                                Participant

                                                                                  Hi Michelle,

                                                                                  I am so happy for you and Don. You are a great inspiration. I will keep you in my prayers.

                                                                                  Banu

                                                                                  Banu
                                                                                  Participant

                                                                                    Hi Michelle,

                                                                                    I am so happy for you and Don. You are a great inspiration. I will keep you in my prayers.

                                                                                    Banu

                                                                                Viewing 17 reply threads
                                                                                • You must be logged in to reply to this topic.
                                                                                About the MRF Patient Forum

                                                                                The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                                                The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.