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Afraid We Are Running Out of Options and Time
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Afraid We Are Running Out of Options and Time

› Forums › General Melanoma Community › Afraid We Are Running Out of Options and Time

  • Post
    • April 19, 2018 at 5:51 pm
    Wife_WilliamR
    Participant

      My husband became Stage IV in August 2014.  He tried 3 immunotherapy trials IPI/Opdivo combo trial, TIL therapy plus 4 doses of Keytruda, Urelumab/Nivolumab trial, then chemo (Temodar) and just finished his 4th immunotherapy trial (had 4 treatments of the Anti-lag 3/Nivolumab but showing progression).  The Temodar is the only thing we saw signs of tumors shrinking (shrunk some but not all).  Now they are recommending chemo again – taxol and carboplatin.  Also note he is NRAS positive.  Please share any info that you feel could be a next step for him.  We are willing to travel anywhere!

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    • Replies
        • April 19, 2018 at 6:48 pm
        marta010
        Participant

          Hi – I don't have any experience with this particular mutation but is IL-2 or Mekinist as a single agent an option?  I recall posts from long ago that might have indicated these two treatments as an option for NRAS type mutations.  Take care.

           

            • April 20, 2018 at 12:45 am
            Khilp
            Participant

              Hi- first off sorry for your husbands condition. I was just diagnosed with stage 2 and waiting to see if it spread anywhere. I am totally freaked out and with kids coming next month, I spend time reading everything I can online about this. I read there are some gene therapy trials in Germany (EU) that have been very sucessful, this may be something worth reaching out for. 

              My dermatologist said not to worry since they have great drugs out now, but apparently they dont work for many people so how can they be great. 

              I wish you the best on your search.

              Khilp

            • April 20, 2018 at 2:18 am
            Bubbles
            Participant

              Hi Stacy,

              It sounds as though you and William have been through ever so much.  I am so sorry.  I thought about your situation all afternoon and this is what I've come up with ~ 

              First:  NRAS patients have responded well to CDK4/6 inhibitors.  Sosman, who was at Vanderbilt in Nashville and is now at Northwestern in Chicago, did a lot of the initial work.  Here is a link to all the reports I have on them:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=cdk4%2F6  If your husband has not tried them, I would certainly give Sosman a call

              Second:  Tumor testing.  For melanoma patients who have failed to respond to any convential treatments, sometimes extensive tumor testing can find the answer.  Maureen's husband had struggled to find a response to any therapy, but with additional testing it was found that he had the HER-2 mutation (more common in breast cancer) and once treated with appropriate drugs for that has done very well.  Here is a link to one of her posts on this forum:  https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/fda-approves-msk-mutation  

              Along the same lines, there is this trial:  https://clinicaltrials.gov/ct2/show/NCT02465060?term=nci+match  

              It appears to still be enrolling and is operating under that same premise…test the tumor and start targeted therapy for what you find. 

              Not sure if this is of any help.  Hang in there.  I wish you and your husband my best.  Celeste

              • April 20, 2018 at 2:39 am
              ed williams
              Participant

                Two things come to mind, both are injectables into tumor, first t-vec and the second idea was from a press release this week from one of the big Oncology meeting. Here is the link to the study data.http://checkmatepharma.com/pdf/release6.pdf

                  • April 20, 2018 at 2:50 am
                  Bubbles
                  Participant

                    Good thinking, Edster!!  I was logging back on to say…and THIRD ~  intralesionals!!  I know a melanoma peep who was on the list for TIL…having tried EVERYTHING but with little to no response…who was started on Pembro (despite having done immunotherapy before) with radiation and t-vec and responded incredibly well.  So much so, that they took her off the list for TIL.  Sooo, yeah.  One more good idea to check on!!  c

                    • April 20, 2018 at 2:56 am
                    ed williams
                    Participant

                      One more idea that comes from Dr. Jason Luke in Chicago is use of targeted radiation. I am not very up to date on the specifics but this trial is linked on his Twitter account to a new start up company working with the university of Chicago. Here is a link to the trial, looks pretty much like early days of the research.https://clinicaltrials.gov/ct2/show/NCT03444714?term=NCT03444714&rank=1

                    • April 20, 2018 at 2:10 pm
                    Wife_WilliamR
                    Participant

                      Thank you everyone for the responses!  Such valuable information!  I will spend this weekend reading and reaching out!  I do have another question – my husband did have the IMPACT testing done at Sloan and recently at Johns Hopkins they sent a biopsy to Foundation One (but said that showed nothing new).  I am still pretty unclear exactly what Foundation One is, but my question is would the MATCH trial at NIH be different from these two test he has already had done?  Thank you again for your help.

                      • April 20, 2018 at 4:38 pm
                      Wife_WilliamR
                      Participant

                        Celeste – good idea, I will reach out to one of the coordinators!  Ed, that is it!  Thank you both!  

                        • April 20, 2018 at 4:43 pm
                        mrsaxde
                        Participant

                          Stacy,

                          I've been thinking about you guys a lot lately. I'm very sorry the LAG-3 trial didn't work. I wish you all the best and that William will find something that works for him. The two of you are in my thoughts on a daily basis.

                          -Bill B

                            • April 20, 2018 at 7:16 pm
                            Wife_WilliamR
                            Participant

                              Thank you Bill!  We have been thinking of you – how are you doing with TIL?

                              • April 22, 2018 at 5:35 pm
                              mrsaxde
                              Participant

                                They let me out of NIH on the 14th. It was good to be home! Everybody at NIH was happy with how I handled the treatment. Dr. Rosenberg told me I did "very well." Coming from someone of his stature, I'll take that as encouraging. So far I'm doing ok, just not a lot of appetite yet and very tired. First followup comes on May 22-24.

                                -Bill

                                • April 24, 2018 at 1:42 pm
                                Wife_WilliamR
                                Participant

                                  Bill – it sounds like you did awesome!  Get lots of rest and let those new cells do their thing!  Continued prayers! – Stacy

                                • April 20, 2018 at 7:18 pm
                                Wife_WilliamR
                                Participant

                                  I did reach out to Dr. Weber and he suggested we look at MD Anderson.  Does anyone have a contact there or a doctor I should try to contact?

                                    • April 20, 2018 at 7:27 pm
                                    Bubbles
                                    Participant

                                      I don't know the particulars of any docs there, but Tex is at MDA and sees Dr. Ross. Here's Tex's bio:  https://www.melanoma.org/community/profiles/texmelanomex  

                                      Perhaps you could reach out to that doc or email Tex through this forum.  c

                                      • April 21, 2018 at 1:31 am
                                      kst
                                      Participant

                                        I have been under the care of Dr. Diab at MDA for about a year now.  Unfortunately, I always end up in the hospital with complications on weekends and holidays when other melanoma specialists are on staff.  I have been under the care of Dr. Diab, Davies, Patel, Tawbi, and Wong during my adverse reactions to Nivo. I would say all are exceptional and I would not recommend one over the other.

                                        To get a consultation, I would recommend your current doctor call and talk directly to one of these docs.  My doctor made the call for me and I was in Houston the next day.  You can also request an appointment online or call 855-562-0878 but I doubt it will be as quick.

                                        • April 21, 2018 at 3:42 pm
                                        Wife_WilliamR
                                        Participant

                                          Thank you for this information!  I am sorry to hear you have had complications, and glad you are getting care from some of the best! 

                                        • April 21, 2018 at 1:28 am
                                        CindyJ
                                        Participant

                                          Hi, just more info for your back pocket. My mother is in the following trial. Her mutation test showed her to be CCND1 amplified. They put her on Ibrance, a breast cancer drug. This study is using another drug for NRAS without further mutations detected. My mom had another PET Wednesday and is now NED. Best wishes for you and your husband!

                                          https://clinicaltrials.gov/ct2/show/NCT02693535?term=Targeted+agent+and+profiling+utilization+registry&cntry=US&rank=1

                                           

                                            • April 21, 2018 at 3:46 pm
                                            Wife_WilliamR
                                            Participant

                                              Cindy that is great news about your Mother!  I emailed the coordinator of this trial at MD Anderson to see if William would be a candidate.  Thank you so much for sharing this info!

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