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After being told no more immunotherapy

Forums Mucosal Melanoma Community After being told no more immunotherapy

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      Sharing an update here in the forum in case it helps someone else.

      After being told no more immunotherapy for my mom due to dose limiting toxicities, we were pretty disheartened since all the advances right now are in immunotherapy.  We were offered Abraxane, which only seems to buy time (and Dr. Ribas confirmed that the hope is to slow down tumor progression).  Celeste sent me a lot of trials to look into, and I also emailed Dr. Weber at NYU who she has said will recommend trials that aren't his own (he did! he responded very quickly as well).

      In short, this is where we are at right now:

      1.  Leaning towards getting the Abraxane as scheduled with hope that there is synergistic effect with the one dose of Keytruda. I know there are Abraxane/Avastin trials at the Rochester Mayo Clinic, but we asked Dr. Ribas about the combo and while he thinks that the role of Avastin is currently unclear, he is open to giving it to us, with the only caveat being that insurance might not approve.

      2.  Getting the tumor tested by Foundation One for mutations for targeted therapy.  Dr. Ribas says that there aren't many actionable mutations in mucosal melanomas, but it is worth a shot.  We are also looking into NCI-MATCH, I-PREDICT (supposedly a more flexible version of NCI-MATCH, and the rare tumor clinic at UCSD. Waiting to schedule the appointment with UCSD, which does all three of these.

      3.  Seeing Dr. Hamid tomorrow.  He called me today and said that there may be trial options at the Angeles Clinic, so we are going to see what they are.  I have a feeling that it is the Glembatumab + Varililumab combo that Paul is offered, since my mom is excluded by other trials by her severe hepatitis.  Coincidentally, Dr. Weber told me about a varililumab + vaccine trial by Celldex in his email. 

      4.  Depending on what my mom's tumor testing reveals, we may look into MEK inhibitors, which Celeste suggested.

      5.  Looking into two trials with Palbociclib that Celeste sent to me.  However, these are in PA and Boston, so we have to take the traveling into consideration.

      6.  Looking into OX-40 trials that my mom might not be excluded by, as suggested by Dr. Weber. Will do this tonight.

      7.  Looking into a Hu5F9-G4 Phase 1 trial at Stanford that Celeste had suggested for Josh.

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          Thanks for posting that Cindy.  Good info there.  Wish you and your mom the best.


            Thanks for posting Cindy. 

            Might be needing to put,a UK slant on some of the options you list.. But so helpful to start with good possible. Supposed to be discussing state of play with oncologist today but we will see.

            Liver issues may have already stopped play with IPI nivo.. Just might be me that needs telling but did get three doses.. But all spread out and with steroids for deranged liver function in the mix..

            We will see..




                Deb, I hope that your oncologist has a good plan for you.  It was disheartening for us to have to stop treatment for liver issues too.  But maybe the doses that you already have in your system will still kick in.  I know they can stay in your system for a long time, and sometimes have delayed effect.  I will pray that is the case with you.

                I also just realized from your that everyone in the forum probably thinks my name is Cindy (my mom's name).  I originally made this account for my mom so I made it a combination of our names Cindy/Connie.  So sorry I didn't catch onto this earlier.



                After reading your post, I wanted to let you know that I have tried 2 of the trials you metioned.  Quick background.  Stage 4 since 2014.  Primary unknown, braf neg.  Tried IL-2, yervoy, opdivo all with limited response.  Was sent to Dallas for geneic trail and was put on Palbociclib.  I stopped responding on that after 6 mos, but side effects were very tolerable.  Dr decided to put me in the trial of Glembatumab & Varililumab.  I go next week for scans, but can tell you that I can tell a big difference in my tumor (tumor in maxillary area). Has started shrinking already.  Even the dr was suprised at the respone when he checked it at my last apt.  I will be up front and let you know that side effects have been somewhat difficult.  Diarrhea, loss of appetite, fatigue, hair loss and horrible rash & itchy.  For me, these start around the 3rd day after infusion and last about a week.  I know everyone is different, so may not be as bad for your mom.  I hope this helps in some way. 


                  Ok!  There's a lot here and that is good!!!  This may take a few posts!

                  1.  The MEK inhibitor plan and the CDK4/6 trials (Palbociclib) in Boston and PA would be something I would pursue only if your mom turns out to be NRAS positive.  Not very comon in mucosal mel but still worth testing for.

                  2.  I would definitely have tumor testing done!!!!  Folks whose melanoma has not responded to conventional therapies have had some amazing results when treated with drugs "for other cancers" like the HER2 breast cancer drugs.

                  3.  OX-40 is often combined with anti-PD-1 or anti-PD-L1 in studies…but there was one study offering it alone…not sure if it is still recruiting.  Here is a link to all the info I have on it on my blog:  

                  4.  Glembatumab vedotin is an ADC….antibody drug conjugate.  It has a tough chemotherapeutic agent bound to a monoclonal antibody.  The theory being that the drug will be sucked into the melanoma cell and once there attack with the kick a$$ chemo part, while it is sequestered there.  Killing melanoma without too much of the usual chemo side effects to the rest of the body.  I have a dear one who is certain this therapy, while it did not cure him, bought him time to seek other treatment that ended up being more effective.  The anon poster seems to be having a good effect as well.  Here is what I have..with links within:

                  …more below….


                      5.  Varilumab (anti-CD27 or CDX-1127) is "an agonist anti-CD27 mAb that has been shown to activate human T cells in the context of T cell receptor stimulation."  In other words, varilumab attaches to the t cell and turns it on.  This different from anti-PD-1 because it acts as an antagonist of the tumor cell's ability to turn off the t cell.  In other words, anti-PD-1 blocks a blocker…it blocks the ability of melanoma cells to turn off t cells.   Varilumab has been combined with nivo (anti-PD1) in studies and did not make the side effects any worse.  I'm not sure what the implications re side effects for your mom would be.

                      6.  HU5F9-G4 – this is a anti-CD47 antibody.  In theory it binds to CD47, located on the tumor cell, and block's its "don't eat me" signal.  Here's what I wrote for Josh:  

                      Guess that about covers things.  Yes, Weber is an incredible melanoma expert and human.  The first step in getting more options often lies in not accepting "no" or something dismissive as one.  Unfortunately, when you ARE the patient….it is very hard to do that for yourself.  Your mom is blessed to have you as her advocate.  

                      Hang in there.  Yours, celeste


                    Cathy M
                      Hope Foundation One comes through with a targetable mutation. My husband was NRAS. He was targeted with Mekinist and that allowed him 9 months of living. It wasn’t hassle free (terrible rash) but he could do things he enjoyed doing…quality of life was good.

                      Best wishes to your mom and family … sending strength for the continued fight against this disease.


                        Hi Cindy,

                        This might be a dumb question but how did you get Dr. Weber's email?  My dad is in the same boat as your mom and I would love to contact him.  On NYU website it is only a phone number for appointments.

                          Hi, sorry to hear things are not going your way. My wife is in same boat.

                          Stage IV, in lymph nodes and bones.

                          Has concurrent follicular lymphoma which has disqualified her from every trial up to now.

                          Progressed after 4 rounds ipi and divide.

                          Had one dose of keytruda and Dr stopped due to new Mets.

                          Now getting radiation for pain.

                          After radiation Dr will start her on Abraxane.

                          Saw Celeste make recommends regards trials to Paul and am thinking of last one on list also for lymphomas I’ll go back and get name of trial and post it.

                          She has no mutations.

                          Hopefully she’ll qualify for trial so we have the dilemma of choice which is non-extistant so far.

                          Hope abraxane works post one round with keytruda. Was in contact with Dr Davies at MD Anderson whom successfully tested patient with Abraxane and keytruda after profession on ipi and divide, but our insurer won’t cover that combo. I got them to cover Abraxane but it was like pulling teeth.

                          All advice is most welcome.

                          God bless, keep the faith.

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