Stage IV Post BRAF/MEK options

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  • Post
    • February 25, 2014 at 6:11 am
    eod0514
    Participant

      Hi

      My son Shane is 34 years old and is Stage IV for the last few  years. Recent treatments include Ipi, BRAF inhibotor *(Zelboraf for 13 months) The Zelboraf stopped working in january 2014. He just started the BRAF/MEK combo (Dabrafenib/trametenib) on Feb 8th 2014. His sub-cutaneious tumors appear to be getting larger and the number of them seems to be increasing. 

      It has only been 2 weeks but we feel that this treatment is not working for Shane. Does anyone know of any other treatments out there or access to open trials for any of them including PD1, PDL. or any other viable options such as bio-chemos or IL2?

      We are trying to determine the best approach at this time so that we can follow the best course going forward. Are there any indicators or markers at this stage that would help get us in the right direction at this late stage?

       

      Regards,

       

      Eileen O'Donoghue

       

    Viewing 5 reply threads
    • Replies
        • February 25, 2014 at 10:05 pm
        kpcollins31
        Participant

          I was given the following guidance from my melanoma treatment coordinator… I am BRAF negative, but here is what she provided as the treatment strategy for BRAF positive with bulky disease (i.e., lots of tumors):

          1. Any one of the BRAF inhibitors preferably trametinib. Other options include Zelboraf and Tafinalar.

          2. Once disease is minimized, start immunotherapy – HD IL-2 or Yervoy.

          Looks like you have done Yervoy (ipi) and Zelboraf. IL-2 could be an option – I would check with your melanoma specialist and get their thoughts. Hang in there.

          Kevin

           

           

          • February 25, 2014 at 10:05 pm
          kpcollins31
          Participant

            I was given the following guidance from my melanoma treatment coordinator… I am BRAF negative, but here is what she provided as the treatment strategy for BRAF positive with bulky disease (i.e., lots of tumors):

            1. Any one of the BRAF inhibitors preferably trametinib. Other options include Zelboraf and Tafinalar.

            2. Once disease is minimized, start immunotherapy – HD IL-2 or Yervoy.

            Looks like you have done Yervoy (ipi) and Zelboraf. IL-2 could be an option – I would check with your melanoma specialist and get their thoughts. Hang in there.

            Kevin

             

             

            • February 25, 2014 at 10:05 pm
            kpcollins31
            Participant

              I was given the following guidance from my melanoma treatment coordinator… I am BRAF negative, but here is what she provided as the treatment strategy for BRAF positive with bulky disease (i.e., lots of tumors):

              1. Any one of the BRAF inhibitors preferably trametinib. Other options include Zelboraf and Tafinalar.

              2. Once disease is minimized, start immunotherapy – HD IL-2 or Yervoy.

              Looks like you have done Yervoy (ipi) and Zelboraf. IL-2 could be an option – I would check with your melanoma specialist and get their thoughts. Hang in there.

              Kevin

               

               

                • February 26, 2014 at 4:09 am
                eod0514
                Participant

                  Thanks Kevin. Shane has been looking at IL-2 for awhile now. He feels strong and we are thinking this might be the best time to do it. It does not appear that teh BRAF/MEK (Tafinalar/Trametinib) combo is working. He spent 13 months on Zelboraf before became resistant. 2 weeks now on the combo and not seeing any results.We are hanging.

                  Eileen

                  • February 26, 2014 at 4:09 am
                  eod0514
                  Participant

                    Thanks Kevin. Shane has been looking at IL-2 for awhile now. He feels strong and we are thinking this might be the best time to do it. It does not appear that teh BRAF/MEK (Tafinalar/Trametinib) combo is working. He spent 13 months on Zelboraf before became resistant. 2 weeks now on the combo and not seeing any results.We are hanging.

                    Eileen

                    • February 26, 2014 at 4:09 am
                    eod0514
                    Participant

                      Thanks Kevin. Shane has been looking at IL-2 for awhile now. He feels strong and we are thinking this might be the best time to do it. It does not appear that teh BRAF/MEK (Tafinalar/Trametinib) combo is working. He spent 13 months on Zelboraf before became resistant. 2 weeks now on the combo and not seeing any results.We are hanging.

                      Eileen

                    • February 26, 2014 at 6:54 am
                    kylez
                    Participant
                      Hi Eileen,
                       
                      One source of help might be to contact a patient advocate organization called Melanoma International Foundation (http://melanomainternational.org) through the email listed on their front page, and tell them you need help finding a trial. That is one of their major functions.
                       
                      Another approach that may be very useful is to make an appointment to get a second opinion from a larger facility with a lot of clinical trials, e.g., MD Anderson or Memorial Sloan Kettering. They will want his records and scans as part of making the appointment. I flew out to MDA a few years ago to do this. As part of the in-person appointment, they should be able to go through their clinical trials with your son. 
                       
                      Another starting point that may be useful is MRF’s clinical trial finder. Click on “Understanding Melanoma” above, then under “Resource Library”, pick “Find a Clinical Trial”. It’s free to use; i understand it’s paid for by the pharma companies. You can give info about your son on the phone, and they (I believe it’s staffed by nurses) will work with you on finding a set of clinical trials that your son may qualify for. 
                       
                      Finally, while the listings on clinicaltrials.gov may not be up-to-date in every detail, they are an excellent source for contact information at trial sites. In the "Contacts" / "Locations" section for each trial listing, look for contacts that have phone #s and/or email addresses. Many won't have it, but quite a few do. You may be able use the contact to ask about any trials at their site, not just the one in the listing.
                       
                      A key person to reach at almost any trial site is the clinical trial coordinator, often an R.N., I believe. At many places (but not all — e.g., not MSK and not MDA in my experience) you may be able to talk directly about clinical trials and qualification criteria over the phone with the coordinator, and also get truly up-to-date information about the trials being offered at their facility — what is open, what is closed, what is coming that may not even be listed yet. What your son may qualify for. Maybe you might make a dozen or more such contacts. A notebook can help you keep organized with you you contacted, when, and what trials they had or might have openings in the future for. If you do find a trial in this fashion that he may have a good chance at qualifying for, and if it is at the top of your list, the next step may be to consider making an appointment to be seen there in-person. 
                       
                      Another question is a practical one, which is how far would be practical for your son to travel to/from on a regular basis (maybe every 2, 3 or 4 weeks for the duration of the trial). One approach might be to search primarily at trial locations with direct flights to/from your son’s location, and/or within a certain distance.
                       
                      Another place to start searching are the web for melanoma treatment centers. Learn to find the “clinical trials” section of the various facility web sites. Looking for lists of clinical trials (again may not be very up to date) but especially look for contact info. Some you may only get through to the front desk who will want to schedule you for an appointment, but others — especially the more research focused locations — will make it easy for you to talk to the clinical trial coordinators. 
                       
                      Some locations offering very promising clinical trials are not NCI-designated cancer centers. Some are places I had never even heard of before, like START in San Antonio TX. 
                       
                      Doing your own search is at least a little daunting, or maybe very daunting, but it may help give him some real choices to consider in addition to IL-2. Enlisting the help of a second opinion oncologist, especially one plugged into clinical trials resarch, could be one way to make the search a little less daunting, or else to get your feet wet.
                       
                      It's great that you're involved in finding what treatment options are available for your son. Hope this helps highlight a few useful starting points.  
                      – Kyle
                        • March 6, 2014 at 6:05 am
                        odonoghue80
                        Participant

                          Hi Kyle, I appreciate your response! I am on the forum as well and just noticed this. What I like about this site and other forums, how other patients and families care. I'm grateful that you put all that thought in your post. 

                          Fortunately I have a couple great record keepers. Both my mom and my aunt (she works at U of Chicago and I allow her to keep all my records, notes, labs, disk, etc) so that have everything on hand. But as you suggested, you have to be on top of your game. 

                          I just started (well I'm in a "washout" part) or committed to participate a clinical study on April 1 at the U of Chicago. The clinical trial is the Anti-PD1 and Anti-KIR combo. I'm also in close contact with MD Anderson in TX (I had an awake craniotomy 6 months ago).

                          I was contemplating at visiting at the NIH in MD but I think at this point I'm going for the trial.

                          Thanks again,

                          Shane

                          • March 6, 2014 at 6:05 am
                          odonoghue80
                          Participant

                            Hi Kyle, I appreciate your response! I am on the forum as well and just noticed this. What I like about this site and other forums, how other patients and families care. I'm grateful that you put all that thought in your post. 

                            Fortunately I have a couple great record keepers. Both my mom and my aunt (she works at U of Chicago and I allow her to keep all my records, notes, labs, disk, etc) so that have everything on hand. But as you suggested, you have to be on top of your game. 

                            I just started (well I'm in a "washout" part) or committed to participate a clinical study on April 1 at the U of Chicago. The clinical trial is the Anti-PD1 and Anti-KIR combo. I'm also in close contact with MD Anderson in TX (I had an awake craniotomy 6 months ago).

                            I was contemplating at visiting at the NIH in MD but I think at this point I'm going for the trial.

                            Thanks again,

                            Shane

                            • March 6, 2014 at 6:05 am
                            odonoghue80
                            Participant

                              Hi Kyle, I appreciate your response! I am on the forum as well and just noticed this. What I like about this site and other forums, how other patients and families care. I'm grateful that you put all that thought in your post. 

                              Fortunately I have a couple great record keepers. Both my mom and my aunt (she works at U of Chicago and I allow her to keep all my records, notes, labs, disk, etc) so that have everything on hand. But as you suggested, you have to be on top of your game. 

                              I just started (well I'm in a "washout" part) or committed to participate a clinical study on April 1 at the U of Chicago. The clinical trial is the Anti-PD1 and Anti-KIR combo. I'm also in close contact with MD Anderson in TX (I had an awake craniotomy 6 months ago).

                              I was contemplating at visiting at the NIH in MD but I think at this point I'm going for the trial.

                              Thanks again,

                              Shane

                            • February 26, 2014 at 6:54 am
                            kylez
                            Participant
                              Hi Eileen,
                               
                              One source of help might be to contact a patient advocate organization called Melanoma International Foundation (http://melanomainternational.org) through the email listed on their front page, and tell them you need help finding a trial. That is one of their major functions.
                               
                              Another approach that may be very useful is to make an appointment to get a second opinion from a larger facility with a lot of clinical trials, e.g., MD Anderson or Memorial Sloan Kettering. They will want his records and scans as part of making the appointment. I flew out to MDA a few years ago to do this. As part of the in-person appointment, they should be able to go through their clinical trials with your son. 
                               
                              Another starting point that may be useful is MRF’s clinical trial finder. Click on “Understanding Melanoma” above, then under “Resource Library”, pick “Find a Clinical Trial”. It’s free to use; i understand it’s paid for by the pharma companies. You can give info about your son on the phone, and they (I believe it’s staffed by nurses) will work with you on finding a set of clinical trials that your son may qualify for. 
                               
                              Finally, while the listings on clinicaltrials.gov may not be up-to-date in every detail, they are an excellent source for contact information at trial sites. In the "Contacts" / "Locations" section for each trial listing, look for contacts that have phone #s and/or email addresses. Many won't have it, but quite a few do. You may be able use the contact to ask about any trials at their site, not just the one in the listing.
                               
                              A key person to reach at almost any trial site is the clinical trial coordinator, often an R.N., I believe. At many places (but not all — e.g., not MSK and not MDA in my experience) you may be able to talk directly about clinical trials and qualification criteria over the phone with the coordinator, and also get truly up-to-date information about the trials being offered at their facility — what is open, what is closed, what is coming that may not even be listed yet. What your son may qualify for. Maybe you might make a dozen or more such contacts. A notebook can help you keep organized with you you contacted, when, and what trials they had or might have openings in the future for. If you do find a trial in this fashion that he may have a good chance at qualifying for, and if it is at the top of your list, the next step may be to consider making an appointment to be seen there in-person. 
                               
                              Another question is a practical one, which is how far would be practical for your son to travel to/from on a regular basis (maybe every 2, 3 or 4 weeks for the duration of the trial). One approach might be to search primarily at trial locations with direct flights to/from your son’s location, and/or within a certain distance.
                               
                              Another place to start searching are the web for melanoma treatment centers. Learn to find the “clinical trials” section of the various facility web sites. Looking for lists of clinical trials (again may not be very up to date) but especially look for contact info. Some you may only get through to the front desk who will want to schedule you for an appointment, but others — especially the more research focused locations — will make it easy for you to talk to the clinical trial coordinators. 
                               
                              Some locations offering very promising clinical trials are not NCI-designated cancer centers. Some are places I had never even heard of before, like START in San Antonio TX. 
                               
                              Doing your own search is at least a little daunting, or maybe very daunting, but it may help give him some real choices to consider in addition to IL-2. Enlisting the help of a second opinion oncologist, especially one plugged into clinical trials resarch, could be one way to make the search a little less daunting, or else to get your feet wet.
                               
                              It's great that you're involved in finding what treatment options are available for your son. Hope this helps highlight a few useful starting points.  
                              – Kyle
                              • February 26, 2014 at 6:54 am
                              kylez
                              Participant
                                Hi Eileen,
                                 
                                One source of help might be to contact a patient advocate organization called Melanoma International Foundation (http://melanomainternational.org) through the email listed on their front page, and tell them you need help finding a trial. That is one of their major functions.
                                 
                                Another approach that may be very useful is to make an appointment to get a second opinion from a larger facility with a lot of clinical trials, e.g., MD Anderson or Memorial Sloan Kettering. They will want his records and scans as part of making the appointment. I flew out to MDA a few years ago to do this. As part of the in-person appointment, they should be able to go through their clinical trials with your son. 
                                 
                                Another starting point that may be useful is MRF’s clinical trial finder. Click on “Understanding Melanoma” above, then under “Resource Library”, pick “Find a Clinical Trial”. It’s free to use; i understand it’s paid for by the pharma companies. You can give info about your son on the phone, and they (I believe it’s staffed by nurses) will work with you on finding a set of clinical trials that your son may qualify for. 
                                 
                                Finally, while the listings on clinicaltrials.gov may not be up-to-date in every detail, they are an excellent source for contact information at trial sites. In the "Contacts" / "Locations" section for each trial listing, look for contacts that have phone #s and/or email addresses. Many won't have it, but quite a few do. You may be able use the contact to ask about any trials at their site, not just the one in the listing.
                                 
                                A key person to reach at almost any trial site is the clinical trial coordinator, often an R.N., I believe. At many places (but not all — e.g., not MSK and not MDA in my experience) you may be able to talk directly about clinical trials and qualification criteria over the phone with the coordinator, and also get truly up-to-date information about the trials being offered at their facility — what is open, what is closed, what is coming that may not even be listed yet. What your son may qualify for. Maybe you might make a dozen or more such contacts. A notebook can help you keep organized with you you contacted, when, and what trials they had or might have openings in the future for. If you do find a trial in this fashion that he may have a good chance at qualifying for, and if it is at the top of your list, the next step may be to consider making an appointment to be seen there in-person. 
                                 
                                Another question is a practical one, which is how far would be practical for your son to travel to/from on a regular basis (maybe every 2, 3 or 4 weeks for the duration of the trial). One approach might be to search primarily at trial locations with direct flights to/from your son’s location, and/or within a certain distance.
                                 
                                Another place to start searching are the web for melanoma treatment centers. Learn to find the “clinical trials” section of the various facility web sites. Looking for lists of clinical trials (again may not be very up to date) but especially look for contact info. Some you may only get through to the front desk who will want to schedule you for an appointment, but others — especially the more research focused locations — will make it easy for you to talk to the clinical trial coordinators. 
                                 
                                Some locations offering very promising clinical trials are not NCI-designated cancer centers. Some are places I had never even heard of before, like START in San Antonio TX. 
                                 
                                Doing your own search is at least a little daunting, or maybe very daunting, but it may help give him some real choices to consider in addition to IL-2. Enlisting the help of a second opinion oncologist, especially one plugged into clinical trials resarch, could be one way to make the search a little less daunting, or else to get your feet wet.
                                 
                                It's great that you're involved in finding what treatment options are available for your son. Hope this helps highlight a few useful starting points.  
                                – Kyle
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