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Finally some good news

Forums General Melanoma Community Finally some good news

  • Post
    shellebrownies
    Participant

      Good morning everyone!

      Good morning everyone!

      If you've been following along with our story, then you'd know that he didn't end up qualifying for the BRAF/MEK trial and he was instead offered Chemo as a hopeful stopgap. Dr. Lawrence was clear in that it wasn't a high chance it would work effectively (25-30% chance, basically), but with how aggressively Don's cancer was spreading, other options like Ipi were not viable.The hope was that the chemo would work enough to bring Don's liver functions back into a more stable place so that he might qualify for a compassionate use PLX trial that was opening soon.

      Don had his first treatment (carboplatin and paxiltaxel) on May 29th. After a tough couple weeks (he ended up getting a staph infection and spent another week in the hospital), Don went for his follow up visit with Dr. Lawrence on Monday.

      He asked Don how he was feeling: better, worse, or the same. Don said about the same (keep in mind that the Vancomycin he is still taking for the Staph infection makes Don vomit at least twice a day). I mentioned to Dr. L that it seemed to me that the tumor under Don's arm had shrunk some (it actually had been bulging out of his armpit making it so Don couldn't put his arm down to his side completely). He asked Don if he thought that also and Don said yes, because he could bring his arm all the way down to his side again.

      Dr. Lawrence took a good look under his arm and palpitated the area well. He was shocked and amazed at what he found. He told us that the response that Don had was something he would have expected if he were on the BRAF trial, but never expected to see after chemo. He said that the underarm tumor used to feel like a softball; now it felt like a couple of marbles.

      His liver numbers, we later discovered, had a similar transformation. Don's LDH level on the morning of 5/30 (a few hours after receiving the Chemo) was 2375. The LDH level from Monday's blood draw was 539.

      Based on the level of Don's response, rather than put him into the Compassionate Use trial as planned, Dr. Lawrence wants to continue Don on the Chemo for as long as it seems effective. This will be judged treatment by treatment, with the knowledge that the BRAF drugs are still there as a resource if needed.

      It also seems promising that the pain medicine levels that were working well for Don when he left MGH post-chemo treatment are too high for him now. His pain management doctor (who we also saw on Monday) agreed that they should be lowered and is bringing the Methadone dose down from 10mg 3xday to 7.5mg 3xday. Even after switching this on Monday, Don hasn't had to use his breakthrough meds since Sunday.

      We are stunned and thrilled that we finally have made some headway against this beast. Still, I have to admit that I am having a hard time switching gears; I still am afraid to have too much hope. Please help me believe. 

      Thanks to you all, and please, keep Don and I in your prayers…it finally seems to be working! smiley

       

      Michelle, wife of Don

    Viewing 17 reply threads
    • Replies
        dawn dion
        Participant

          I am so happy that you finally have some room to breath.  I am by no means close to where you are with this beast and the thougth of it terrifies me.   I think of the two of you as well as Jill and Eric often. 

          I hope the treatment continues to work and that he is able to get to the BRAF/MEK.  I am currently doing the GSK BRAF/MEK combo and so far so good.  I continue to hear wonderful things about it. 

          Best of luck to you.  I know we all (patients and caregivers alike) do what we have to do in these situations but it continues to amaze me how truly tuff and brave we really are.

          Hugs and Smiles

          Dawn

          dawn dion
          Participant

            I am so happy that you finally have some room to breath.  I am by no means close to where you are with this beast and the thougth of it terrifies me.   I think of the two of you as well as Jill and Eric often. 

            I hope the treatment continues to work and that he is able to get to the BRAF/MEK.  I am currently doing the GSK BRAF/MEK combo and so far so good.  I continue to hear wonderful things about it. 

            Best of luck to you.  I know we all (patients and caregivers alike) do what we have to do in these situations but it continues to amaze me how truly tuff and brave we really are.

            Hugs and Smiles

            Dawn

            jag
            Participant

              That is very good news Michelle, very happy for you.

              Tell Don, to keep on shrinking!

              jag
              Participant

                That is very good news Michelle, very happy for you.

                Tell Don, to keep on shrinking!

                Phil S
                Participant
                  Michelle So glad to hear your good news, you both deserve some breathing room. I will continue to keep you and Don in our prayers. Michelle, you are a wonderful advocate for your husband’s care, keep up the good work, but also make sure you are taking care of you. God bless!! Valerie (Phil’s wife)
                  Phil S
                  Participant
                    Michelle So glad to hear your good news, you both deserve some breathing room. I will continue to keep you and Don in our prayers. Michelle, you are a wonderful advocate for your husband’s care, keep up the good work, but also make sure you are taking care of you. God bless!! Valerie (Phil’s wife)
                    Carol Taylor
                    Participant

                      Hallelujah Michelle and Don and thank You Lord! Have Hope Michelle. Without it, why are you bothering to fight? You simply can't let this stuff win without a fight and you cannot fight without the hope of winning and You can't win without Hope.

                      Lord, we thank You for the mercy and power You have shown in Don. Lift him and Michelle up during this hard battle even as we lift You up and we thank You. Amen and Amen!

                      Grace and much peace to you friends,

                      Carol

                      Carol Taylor
                      Participant

                        Hallelujah Michelle and Don and thank You Lord! Have Hope Michelle. Without it, why are you bothering to fight? You simply can't let this stuff win without a fight and you cannot fight without the hope of winning and You can't win without Hope.

                        Lord, we thank You for the mercy and power You have shown in Don. Lift him and Michelle up during this hard battle even as we lift You up and we thank You. Amen and Amen!

                        Grace and much peace to you friends,

                        Carol

                        lhaley
                        Participant

                          Michelle,

                          I am so glad that Don is having success!  There have been many drugs tried for melanoma that haven't passed the muster to get FDA approval.  However, there are always "some" that do well on these trials!  This drug combo might just be the right match for Don. 

                          A few years ago a women named Ann would post for her husband Rich. He had mets everywhere, they lived in Phil. Pa.  His Dr was Lynn Shutler (I know I'm spelling it wrong). He was put on a combo of drugs that was in the big trial of the time (the name is flirting with me, I think it started with a D….) and while it didn't work for many it was a homerun for Rich.  Last time I heard from her he was over 8 years NED! That was about 2 years ago. 

                          Glad you have good news to post!

                          Linda

                          lhaley
                          Participant

                            Michelle,

                            I am so glad that Don is having success!  There have been many drugs tried for melanoma that haven't passed the muster to get FDA approval.  However, there are always "some" that do well on these trials!  This drug combo might just be the right match for Don. 

                            A few years ago a women named Ann would post for her husband Rich. He had mets everywhere, they lived in Phil. Pa.  His Dr was Lynn Shutler (I know I'm spelling it wrong). He was put on a combo of drugs that was in the big trial of the time (the name is flirting with me, I think it started with a D….) and while it didn't work for many it was a homerun for Rich.  Last time I heard from her he was over 8 years NED! That was about 2 years ago. 

                            Glad you have good news to post!

                            Linda

                              lhaley
                              Participant

                                I just read the article that Gene attached to his post. Rich's drug combo was known as the Dartmouth Regime.  I haven't talked to Ann for about 2 years but a mutual friend recently told me that Rich continues to be NED. 

                                lhaley
                                Participant

                                  I just read the article that Gene attached to his post. Rich's drug combo was known as the Dartmouth Regime.  I haven't talked to Ann for about 2 years but a mutual friend recently told me that Rich continues to be NED. 

                                Carmon in NM
                                Participant

                                  Hi Michelle – I finished a clinical trial combining carboplatin, paxlitaxol and temodar in April and I'm currently in full remission thanks to it! I have my first three month set of scans on July 11th and of course it worries me, but I'll take NED as long as I've got it!

                                  I hope so much that this combo continues to work so well for Don too!

                                  Carmon in NM
                                  Participant

                                    Hi Michelle – I finished a clinical trial combining carboplatin, paxlitaxol and temodar in April and I'm currently in full remission thanks to it! I have my first three month set of scans on July 11th and of course it worries me, but I'll take NED as long as I've got it!

                                    I hope so much that this combo continues to work so well for Don too!

                                    Gene_S
                                    Participant

                                      Hi Michelle,

                                      I am very happy for both of you. This is very good news!

                                      Here is a link that may be of interest to you, see:

                                      http://www.suite101.com/content/chemotherapy-treatment-for-advanced-melanoma-a248155

                                      Best Wishes,

                                      Gene

                                      Gene_S
                                      Participant

                                        Hi Michelle,

                                        I am very happy for both of you. This is very good news!

                                        Here is a link that may be of interest to you, see:

                                        http://www.suite101.com/content/chemotherapy-treatment-for-advanced-melanoma-a248155

                                        Best Wishes,

                                        Gene

                                          boot2aboot
                                          Participant

                                            i am glad Dr L's strategy to reduce tumor load is working…and once enough of them shrink…you guys will get targeted therapy and see even more dramatic results….FINALLY!

                                            Thank you Great Spirit!

                                            boot2aboot
                                            Participant

                                              i am glad Dr L's strategy to reduce tumor load is working…and once enough of them shrink…you guys will get targeted therapy and see even more dramatic results….FINALLY!

                                              Thank you Great Spirit!

                                            debandmike
                                            Participant

                                              Michelle and Don,

                                              You are both in our prayers for fighting this terrible beast. Baby steps I am finding are a wonderful thing and every positive thing can magify the positive. Keep up the fight..

                                              Best Wishes,

                                              Debby and Mike

                                              debandmike
                                              Participant

                                                Michelle and Don,

                                                You are both in our prayers for fighting this terrible beast. Baby steps I am finding are a wonderful thing and every positive thing can magify the positive. Keep up the fight..

                                                Best Wishes,

                                                Debby and Mike

                                                FormerCaregiver
                                                Participant

                                                  Thanks for the update, Michelle. It is a relief that things are turning around for the
                                                  better! It is also a good sign that Don hasn't had to use breakthrough medication for a
                                                  few days.

                                                  Both of you remain in my prayers.

                                                  Frank from Australia

                                                  FormerCaregiver
                                                  Participant

                                                    Thanks for the update, Michelle. It is a relief that things are turning around for the
                                                    better! It is also a good sign that Don hasn't had to use breakthrough medication for a
                                                    few days.

                                                    Both of you remain in my prayers.

                                                    Frank from Australia

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