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Drug MSB0010445 along with SRS
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Drug MSB0010445 along with SRS

› Forums › General Melanoma Community › Drug MSB0010445 along with SRS

  • Post
    • April 19, 2014 at 5:49 pm
    killmel
    Participant

      My husband is stage 4. his doctor is recommending a clinincal trial MSB0010445 along with SRS.

      Anyone in this trial??? I would be sincerely greatly if you shared your experience. (ie: did the drug work for you, side effects, anything else we should know)

      My doctor does not have this trial so please  recommended trial site. We live in California. This would be our first trial.

      Thanks for helping us.

      Penelope

    Viewing 8 reply threads
    • Replies
        • April 20, 2014 at 2:30 am
        BrianP
        Participant

          Penelope,

          Check out this thread:

          http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/drug-called-msb0010445

          Maybe you could send a private message to dhrahm.

          • April 20, 2014 at 2:30 am
          BrianP
          Participant

            Penelope,

            Check out this thread:

            http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/drug-called-msb0010445

            Maybe you could send a private message to dhrahm.

            • April 20, 2014 at 2:30 am
            BrianP
            Participant

              Penelope,

              Check out this thread:

              http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/drug-called-msb0010445

              Maybe you could send a private message to dhrahm.

              • April 20, 2014 at 4:39 am
              dhrahn
              Participant

                Hi Penelope –

                My husband has been on this trial since February.  He did really well on it until this last infusion.  At one point his tumors were rapidly progressing. We then started this trial and though they didn't shrink anything substantionally, it did slow the cancer down.  Some tumors shrunk a little but for the most part he was considered "stable".  Which is good.  He had 3 infusions and after the first 2 he was really fatigued and just didn't feel "right".  No nausea, vomiting, diarrhea just felt off.  Also had night sweats and cold chills.  It all started 1-2 days after the infusion.  He also had a little chest tightness and wheezing.  After the 3rd infusion (about 1 month ago) the wheezing and shortness of breath hit him like a train about 6 hours after infusion.  He was really short of breath and severe wheezing.  Nothing that put us in the hospital or anything he just couldn't walk very far distances or up stairs.  The weird thing is that it comes and goes.  He was fine a few days ago and then all of a sudden you can hear him across the room.  Same goes with the night sweats and cold chills.  He will be fine and then… bam.   This last week we had decided to stop the drug and our Dr. agreed due to his lungs are still really inflammed as well as another small brain met appeared.  Overall I think it was a good choice.  PD1 had not been released yet for expanded access and it's always good to have more options than less.  We are now treating the brain met on Tuesday, hopefully get his lung issue resolved and then get on the PD1 bandwagon.  My husband has continued to work on it as well as travel a bit with his work.  We live in SD and were on the trial with Dr. Hamid in Los Angeles.  Feel free to ask me anything.  At the beginning it was really nerve wracking for me because I could not find anything about it online.  Again, please don't hesitate to ask me anything.  Best of luck!

                Holly

                • April 20, 2014 at 4:39 am
                dhrahn
                Participant

                  Hi Penelope –

                  My husband has been on this trial since February.  He did really well on it until this last infusion.  At one point his tumors were rapidly progressing. We then started this trial and though they didn't shrink anything substantionally, it did slow the cancer down.  Some tumors shrunk a little but for the most part he was considered "stable".  Which is good.  He had 3 infusions and after the first 2 he was really fatigued and just didn't feel "right".  No nausea, vomiting, diarrhea just felt off.  Also had night sweats and cold chills.  It all started 1-2 days after the infusion.  He also had a little chest tightness and wheezing.  After the 3rd infusion (about 1 month ago) the wheezing and shortness of breath hit him like a train about 6 hours after infusion.  He was really short of breath and severe wheezing.  Nothing that put us in the hospital or anything he just couldn't walk very far distances or up stairs.  The weird thing is that it comes and goes.  He was fine a few days ago and then all of a sudden you can hear him across the room.  Same goes with the night sweats and cold chills.  He will be fine and then… bam.   This last week we had decided to stop the drug and our Dr. agreed due to his lungs are still really inflammed as well as another small brain met appeared.  Overall I think it was a good choice.  PD1 had not been released yet for expanded access and it's always good to have more options than less.  We are now treating the brain met on Tuesday, hopefully get his lung issue resolved and then get on the PD1 bandwagon.  My husband has continued to work on it as well as travel a bit with his work.  We live in SD and were on the trial with Dr. Hamid in Los Angeles.  Feel free to ask me anything.  At the beginning it was really nerve wracking for me because I could not find anything about it online.  Again, please don't hesitate to ask me anything.  Best of luck!

                  Holly

                    • April 20, 2014 at 4:51 am
                    dhrahn
                    Participant

                      ** We started in January. 

                      • April 20, 2014 at 4:51 am
                      dhrahn
                      Participant

                        ** We started in January. 

                        • April 20, 2014 at 4:51 am
                        dhrahn
                        Participant

                          ** We started in January. 

                        • April 20, 2014 at 4:39 am
                        dhrahn
                        Participant

                          Hi Penelope –

                          My husband has been on this trial since February.  He did really well on it until this last infusion.  At one point his tumors were rapidly progressing. We then started this trial and though they didn't shrink anything substantionally, it did slow the cancer down.  Some tumors shrunk a little but for the most part he was considered "stable".  Which is good.  He had 3 infusions and after the first 2 he was really fatigued and just didn't feel "right".  No nausea, vomiting, diarrhea just felt off.  Also had night sweats and cold chills.  It all started 1-2 days after the infusion.  He also had a little chest tightness and wheezing.  After the 3rd infusion (about 1 month ago) the wheezing and shortness of breath hit him like a train about 6 hours after infusion.  He was really short of breath and severe wheezing.  Nothing that put us in the hospital or anything he just couldn't walk very far distances or up stairs.  The weird thing is that it comes and goes.  He was fine a few days ago and then all of a sudden you can hear him across the room.  Same goes with the night sweats and cold chills.  He will be fine and then… bam.   This last week we had decided to stop the drug and our Dr. agreed due to his lungs are still really inflammed as well as another small brain met appeared.  Overall I think it was a good choice.  PD1 had not been released yet for expanded access and it's always good to have more options than less.  We are now treating the brain met on Tuesday, hopefully get his lung issue resolved and then get on the PD1 bandwagon.  My husband has continued to work on it as well as travel a bit with his work.  We live in SD and were on the trial with Dr. Hamid in Los Angeles.  Feel free to ask me anything.  At the beginning it was really nerve wracking for me because I could not find anything about it online.  Again, please don't hesitate to ask me anything.  Best of luck!

                          Holly

                          • April 20, 2014 at 12:56 pm
                          POW
                          Participant

                            Has your husband tried ipi yet? Has he taken a BRAF inhibitor?

                            The reason I ask is that in order to qualilfy for the anti-PD1 expanded access program you have to have taken and failed ipi and a BRAF inhibitor (assuming your tumor has the BRAF mutation). Is there some reason your husband's doctor is recommending this clinical trial rather than one of these (newly) standard treatments?

                            • April 20, 2014 at 12:56 pm
                            POW
                            Participant

                              Has your husband tried ipi yet? Has he taken a BRAF inhibitor?

                              The reason I ask is that in order to qualilfy for the anti-PD1 expanded access program you have to have taken and failed ipi and a BRAF inhibitor (assuming your tumor has the BRAF mutation). Is there some reason your husband's doctor is recommending this clinical trial rather than one of these (newly) standard treatments?

                                • April 20, 2014 at 7:49 pm
                                dhrahn
                                Participant

                                  Yes, he has been on Zelboraf and yervoy.   Zelboraf knocked everything down a lot and even got rid of 2 lung mets.  But Ipi didn't do much.  They considered him to have "failed" treatment… Which you are right I believe that is required for the eap PD1.

                                  • April 20, 2014 at 7:49 pm
                                  dhrahn
                                  Participant

                                    Yes, he has been on Zelboraf and yervoy.   Zelboraf knocked everything down a lot and even got rid of 2 lung mets.  But Ipi didn't do much.  They considered him to have "failed" treatment… Which you are right I believe that is required for the eap PD1.

                                    • April 21, 2014 at 12:05 am
                                    killmel
                                    Participant

                                      I get a little confused with all this medical jargon. Just to clarify something you said it your post.

                                      After you get your husbands, brain & lungs under control then your husband will qualify for Merck's EAP.

                                      I am assuming you will then do Merck EAP with your same doctor hamid Is the Merck EAP now open  at the Angeles Clinic ? If not, do you have a date or timeframe when idr hamid told you it would be open at the Clinic.

                                      Thanks for sharing

                                      • April 21, 2014 at 12:05 am
                                      killmel
                                      Participant

                                        I get a little confused with all this medical jargon. Just to clarify something you said it your post.

                                        After you get your husbands, brain & lungs under control then your husband will qualify for Merck's EAP.

                                        I am assuming you will then do Merck EAP with your same doctor hamid Is the Merck EAP now open  at the Angeles Clinic ? If not, do you have a date or timeframe when idr hamid told you it would be open at the Clinic.

                                        Thanks for sharing

                                        • April 21, 2014 at 12:05 am
                                        killmel
                                        Participant

                                          I get a little confused with all this medical jargon. Just to clarify something you said it your post.

                                          After you get your husbands, brain & lungs under control then your husband will qualify for Merck's EAP.

                                          I am assuming you will then do Merck EAP with your same doctor hamid Is the Merck EAP now open  at the Angeles Clinic ? If not, do you have a date or timeframe when idr hamid told you it would be open at the Clinic.

                                          Thanks for sharing

                                          • April 20, 2014 at 7:49 pm
                                          dhrahn
                                          Participant

                                            Yes, he has been on Zelboraf and yervoy.   Zelboraf knocked everything down a lot and even got rid of 2 lung mets.  But Ipi didn't do much.  They considered him to have "failed" treatment… Which you are right I believe that is required for the eap PD1.

                                          • April 20, 2014 at 12:56 pm
                                          POW
                                          Participant

                                            Has your husband tried ipi yet? Has he taken a BRAF inhibitor?

                                            The reason I ask is that in order to qualilfy for the anti-PD1 expanded access program you have to have taken and failed ipi and a BRAF inhibitor (assuming your tumor has the BRAF mutation). Is there some reason your husband's doctor is recommending this clinical trial rather than one of these (newly) standard treatments?

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