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Zelboraf has run its course at abou 10 months, hoping to begin clinical trial next week

Forums General Melanoma Community Zelboraf has run its course at abou 10 months, hoping to begin clinical trial next week

  • Post
    H555
    Participant

      I've updated my profile to give more in depth info but here's the summary. I was diagnosed at stage 4 about this time last year with numerous nodules and malignancies in my lungs. prior to that had been stage 3 for about 10 months when an inguinal lymph node was found to be malignant, 16 years after a primary on my calf. had LND, 17 lymph nodes were removed, only the 1 was malignant. had high dose radiation on that area after the surgery. 10 IV Interferon treatments Nov 2011.

      I've updated my profile to give more in depth info but here's the summary. I was diagnosed at stage 4 about this time last year with numerous nodules and malignancies in my lungs. prior to that had been stage 3 for about 10 months when an inguinal lymph node was found to be malignant, 16 years after a primary on my calf. had LND, 17 lymph nodes were removed, only the 1 was malignant. had high dose radiation on that area after the surgery. 10 IV Interferon treatments Nov 2011. Feb of 2012 had breathing problems, subsequent scans showed info in first line of this update.  Began Zelboraf and hi dose radiation in late feb of last year. had some dosage adjustments intially, ended up taking 3 and 3. Scans were good until Feb of this year when one remaining node that had been the largest began to growand was joined by a 2nd node of the same size in the same lung. My oncologists locally and at OHSU referred me to a Phase I clinical trial at OHSU and have been in the process of being screened for that, more screening this week but i'm scheduled to begin the new treatments a week from this wednesday. The trial is being conducted at the OHSU Knight Cancer Institute. Title is "EMR200066_006: an Open-Label, Phase Ib Dose Escalation Trial of Oral Combination Therapy with  MSC1936369B and SAR 245409 in Subjects with Locally Advanced or Metastic Solid Tumors. " the Sponsor is EMD Serono, inc.  the drugs are an MEK inhibitor and a combination P13K and mTOR inhibitors.

      This trial is also enrolling patients with corresponding breast cancer, Non Small Cell Lung Cancer and Colorectal Cancer.  I'm feeling pretty lucky to get into this trial and will post how it rolls out.

      I had hoped to be one of those long term responders to Zelboraf because it worked so quikcly and so well for me, I had very few of the side effects, all of which were quite livable but it was not to be.

    Viewing 14 reply threads
    • Replies
        aldakota22
        Participant

          What a dissapointment.Praying that you will be a complete responder in the new alphabet trial.Keep us posted/Beat the Beast. Al

          aldakota22
          Participant

            What a dissapointment.Praying that you will be a complete responder in the new alphabet trial.Keep us posted/Beat the Beast. Al

            aldakota22
            Participant

              What a dissapointment.Praying that you will be a complete responder in the new alphabet trial.Keep us posted/Beat the Beast. Al

              awillett1991
              Participant
                Just wanted to say Rats! I’m so sorry that it failed you. I hope the new trial does the trick. I hope you don’t mind me asking, can you share what your dose was modified to in Nov/Dec and why?

                Thanks and I really do wish you great success with your new trial,
                Amy

                awillett1991
                Participant
                  Just wanted to say Rats! I’m so sorry that it failed you. I hope the new trial does the trick. I hope you don’t mind me asking, can you share what your dose was modified to in Nov/Dec and why?

                  Thanks and I really do wish you great success with your new trial,
                  Amy

                  awillett1991
                  Participant
                    Just wanted to say Rats! I’m so sorry that it failed you. I hope the new trial does the trick. I hope you don’t mind me asking, can you share what your dose was modified to in Nov/Dec and why?

                    Thanks and I really do wish you great success with your new trial,
                    Amy

                      H555
                      Participant
                        Amy. I was becoming more and more fatigued all the time. Some mild nausea. My dosage had been 3 pills morning and night since about late April. Wed taken a 3 week trip to Kenya and Cairo, some urban time, mostly in the bush with our son in the Peace Corps and had no trouble with side effects, I really paid attention to avoiding sunburn but my increased sensitivity to UV wasn’t as bad as many. But in the fall I was spending more and more time sleeping.
                        H555
                        Participant
                          Amy. I was becoming more and more fatigued all the time. Some mild nausea. My dosage had been 3 pills morning and night since about late April. Wed taken a 3 week trip to Kenya and Cairo, some urban time, mostly in the bush with our son in the Peace Corps and had no trouble with side effects, I really paid attention to avoiding sunburn but my increased sensitivity to UV wasn’t as bad as many. But in the fall I was spending more and more time sleeping.
                          H555
                          Participant
                            Amy. I was becoming more and more fatigued all the time. Some mild nausea. My dosage had been 3 pills morning and night since about late April. Wed taken a 3 week trip to Kenya and Cairo, some urban time, mostly in the bush with our son in the Peace Corps and had no trouble with side effects, I really paid attention to avoiding sunburn but my increased sensitivity to UV wasn’t as bad as many. But in the fall I was spending more and more time sleeping.
                          Hstevens0072
                          Participant
                            Good luck in the trial. I have it in my lungs as well and am on Ipilimumab . I’ve had two infusions so far, two more to go. No side effects. I’m looking forward to reading about your success 🙂
                            Holly
                            Hstevens0072
                            Participant
                              Good luck in the trial. I have it in my lungs as well and am on Ipilimumab . I’ve had two infusions so far, two more to go. No side effects. I’m looking forward to reading about your success 🙂
                              Holly
                                H555
                                Participant
                                  Thanks Holly. Plan B if the drugs in the clinical stop working is ipi and I’ve wondered how well that would work.
                                  Gene_S
                                  Participant

                                    Ipi took care of the ones in my husbands lungs and liver so I hope it would work for you if needed.

                                    Judy (loving wife of Gene)

                                    Gene_S
                                    Participant

                                      Ipi took care of the ones in my husbands lungs and liver so I hope it would work for you if needed.

                                      Judy (loving wife of Gene)

                                      Gene_S
                                      Participant

                                        Ipi took care of the ones in my husbands lungs and liver so I hope it would work for you if needed.

                                        Judy (loving wife of Gene)

                                        H555
                                        Participant
                                          Thanks Holly. Plan B if the drugs in the clinical stop working is ipi and I’ve wondered how well that would work.
                                          H555
                                          Participant
                                            Thanks Holly. Plan B if the drugs in the clinical stop working is ipi and I’ve wondered how well that would work.
                                          Hstevens0072
                                          Participant
                                            Good luck in the trial. I have it in my lungs as well and am on Ipilimumab . I’ve had two infusions so far, two more to go. No side effects. I’m looking forward to reading about your success 🙂
                                            Holly
                                            Richard_K
                                            Participant

                                               

                                              Very sorry to hear about Zelboraf but want to wish you the best on your new path.

                                              Dick

                                              Richard_K
                                              Participant

                                                 

                                                Very sorry to hear about Zelboraf but want to wish you the best on your new path.

                                                Dick

                                                  H555
                                                  Participant
                                                    Thank you Dick. I finished all the screening and testing and I’m patient #1. Also learned from scans for this trial that my most stubborn nodule in my left lung has only gone from 11 mm to 22 mm in the last 7 weeks and I only have one other small nodule in that lung. Good time to hit them with MEK, p13K and mTor inhibitors. I start at 8:00 am on Wednesday. Congratulations on your contined good success with Zelsboraf.
                                                    H555
                                                    Participant
                                                      Thank you Dick. I finished all the screening and testing and I’m patient #1. Also learned from scans for this trial that my most stubborn nodule in my left lung has only gone from 11 mm to 22 mm in the last 7 weeks and I only have one other small nodule in that lung. Good time to hit them with MEK, p13K and mTor inhibitors. I start at 8:00 am on Wednesday. Congratulations on your contined good success with Zelsboraf.
                                                      H555
                                                      Participant
                                                        Thank you Dick. I finished all the screening and testing and I’m patient #1. Also learned from scans for this trial that my most stubborn nodule in my left lung has only gone from 11 mm to 22 mm in the last 7 weeks and I only have one other small nodule in that lung. Good time to hit them with MEK, p13K and mTor inhibitors. I start at 8:00 am on Wednesday. Congratulations on your contined good success with Zelsboraf.
                                                      Richard_K
                                                      Participant

                                                         

                                                        Very sorry to hear about Zelboraf but want to wish you the best on your new path.

                                                        Dick

                                                        sgrain
                                                        Participant

                                                          So sorry that the Zelboraf didn't work for you for as long as you had hoped but it's great that you did get some good response.  I started Zel Feb 13 (tumors in both lungs) and could only do full dose for 8 days – hives, escalated liver functions, skin issues, etc and have reduced dose to 1 pill a day, starting yesterday.  Some tumors have reduced and some even disappeared but fear I will be in your boat soon.

                                                          I will definitely be looking into the trial you mentioned and will follow your posts from here on.  I truly hope this trial is successful and shows promise for the long haul.

                                                          There just has to be some good news for us fighting this nasty battle!  Best wishes.

                                                          Sandy

                                                          sgrain
                                                          Participant

                                                            So sorry that the Zelboraf didn't work for you for as long as you had hoped but it's great that you did get some good response.  I started Zel Feb 13 (tumors in both lungs) and could only do full dose for 8 days – hives, escalated liver functions, skin issues, etc and have reduced dose to 1 pill a day, starting yesterday.  Some tumors have reduced and some even disappeared but fear I will be in your boat soon.

                                                            I will definitely be looking into the trial you mentioned and will follow your posts from here on.  I truly hope this trial is successful and shows promise for the long haul.

                                                            There just has to be some good news for us fighting this nasty battle!  Best wishes.

                                                            Sandy

                                                            sgrain
                                                            Participant

                                                              So sorry that the Zelboraf didn't work for you for as long as you had hoped but it's great that you did get some good response.  I started Zel Feb 13 (tumors in both lungs) and could only do full dose for 8 days – hives, escalated liver functions, skin issues, etc and have reduced dose to 1 pill a day, starting yesterday.  Some tumors have reduced and some even disappeared but fear I will be in your boat soon.

                                                              I will definitely be looking into the trial you mentioned and will follow your posts from here on.  I truly hope this trial is successful and shows promise for the long haul.

                                                              There just has to be some good news for us fighting this nasty battle!  Best wishes.

                                                              Sandy

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