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Significant Progression After ipi and Nivo

Forums Ocular Melanoma Community Significant Progression After ipi and Nivo

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      Back in 10/2017, my FIL was diagnosed with Stage IV Melanoma.  Primary was Uveal Melanoma in left eye 27 years ago.

      In 11/2017, FIL began cycle of Nivo/ipi through 1/2018.  In 1/2018, began Nivo every two weeks up until last week.

      In February, scan showed growth in in 4×4 liver tumor to 5×5.  Also showed a number of other new mets throughout stomach and liver.  In March, another scan showed more progression (more mets, more growth in others).  

      At this point, all treatment has stopped.  My FIL does not seem at all interested in clinical trials.  The doctor mentioned one oral drug that prolongs life by a small length in a small percentage of patients.  

      A few questions:

      1) Does anyone have any good resources on what progression can look like?  

      2) Are there any resources on what symptoms might look like as it gets closer to the end?  We have no clue if we are days or years away?

      3) I can't begin to imagine what my FIL is going through.  He is against clinical trials because he "doesn't want to be a lab rat."  I know this may be more psychological than medical, but any advice on how to advise him here?


      Thanks for any help.

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          Hi Jer Lon,

          I am sorry for what your FIL and family are going through.  Here are my thoughts:

          1.  Progression looks all sorts of ways.  Basically more tumor burden – unresponsive and/or in spite of treatment = progression.

          2.  For a time line of predictions and prognosis it would be best to speak to his doctors directly.  They have his scans and info.  They can best answer questions about the "end" and should work to prepare all of you as best they can.  However, there are many of us here who have exceeded our predicted expiration dates…though sadly, there are many who have not.

          3.  Clinical trials are not for everyone.  However, they have been a key component in outliving that predicted expiration date for may of us as individuals.  Additionally, being a "rattie" is a point of pride for many here…myself in particular…and our paticipation in trials as ratties has not only afforded the continuation of our own lives, but the lives of others with the approval of ipi (Yervoy), nivo (Opdivo), Pembro (Ketruda) and a variety of BRAF/MEK inhibitors all since 2011.

          4.  Uveal melanoma…much like mucosal melanoma…is particularly difficult to treat effectively even with our current advances in treatment.  Here is a post that addresses the difficulty: 

          Uveal melanoma often has a different sort of mutation than cutaneous melanoma.  Frequently it is a GNAQ or GNA11 mutation.  This diagram may help show you what I am talking about:  

          And if that is what your person had to begin with…that is probably what he has progressed with.  Additional tumor testing can often provide incredibly helpful information that allows effective treatment.  There are some melanoma patients on this board who failed to respond to numerous typical treatments, and with tumor testing found that their tumor was positive for the HER-2 mutation and have done very well on breast cancer treatment.

          Further, if you look at the pathway pic in the link above, some folks with GNA11 and GNAQ positive tumors respond well to BRAF, MEK, and ERK inhibitors because they are in that path.

          5.  Finally, no person can judge what is best for another.  I would hate for your FIL to sell his options short because he has not pursued some avenues.  But, it would be wrong for any of us the presume what the right path is for him. 

          Not sure if any of this helps, but I wish you my best.  One more link regarding "ratties" below if you think it would help to share it with him.  Yours, celeste



              Your information on mucosal melanoma is not correct.There is a much noise made over the Internet with clashing data depending on the particular study and clinical trial group.Here is a link that indicates that the  Anti-PD checkpoint inhibitors  are beneficial to patients with mucosal melanoma:

              Also studies  in patients with mucosal melanoma with NRAS mutation had shown that 7 out of 11 patients /64%/ are responders therefore the Anti-PD had shown the highest response rate in patients with NRAS mutation compared to any other melanoma type, including cutaneous melanoma.

              It would be good  to check yout facts first.





                Hello anon.

                I am quite vigilant regarding the facts of mucosal melanoma and all comments I make.  The post I shared from ASCO 2016 was relevant for the particular poster on this thread in regard to uveal melanoma and the points the experts from ASCO made about mucosal melanoma were theirs and a side issue to this lady's father-in-law.  Here are additional posts made more recently about mucosal melanoma from experts in the field like Hodi and Weber:  

                Per all these reports, including the one you posted, some folks with mucosal melanoma respond to anti-PD-1 and do even better when anti-PD-1 is combined with ipi.  However, their response rates do not reach what those products achieve for folks with cutaneous melanoma.

                To quote your article:  “The data presented here are important because they prove that patients with mucosal melanoma can benefit from anti-PD-1 therapy and should not be excluded from this treatment,” said Butler. “At this stage, we don’t know why some mucosal melanoma patients responded to pembrolizumab while others did not. This is an important question and research is ongoing.”

                So….even experts note that treating mucosal melanoma can be even more difficult that treating cutaneous melanoma.  My only comment was this:  "Uveal melanoma…much like mucosal melanoma…is particularly difficult to treat effectively even with our current advances in treatment."  

                That doesn't mean that some will not benefit from current treatments.  It just means that some will not…per the experts…not me.  I am sorry you were offended.

                I wish you my best.  Celeste



                  Also that the study  you refer to is from 2016  article and it says that the mucosal melanoma patients have 23% response rate to anti-pd treatment.The link provided below your post is from February 9th,  2017 and it points to a much higher percentage, 35%.With the newest research and advancement in melanoma  treatment, and the second line of new immumnotherapy Incyte /epacadostat/  in combination with anti-pd  currently still on trial , this number is likely set to rise even higher in 2018.Therefore the information provided on your blog is not up to date and you should be careful with pushing your blog as a last instance of medical information.


                    Where does she said it's the "last instance of medical information"?  It's a BLOG!  She has tons of good info in one location.  It's a STARTING place, not an end all.  What's with all the animosity?


                    Thank you for all of the responses (and fun debate).  


                    The Onc is recommending Mekinist at this point.  My FIL is considering.  




                        Actually, there are those for whom MEK inhibitors has been very helpful…as you can see it might be from the diagram I posted.  I wish you and your FIL my best.  c


                        As to question 3, A trial at MD Anderson with low side effect profile has added a 10 slot cohort for Uveal melanoma with hepatic (liver) metastases.  Recent NED patient there, inspiring forum poster, TexMelanomex, used the same drug  (along with Pembro) starting last fall and is now NED for stage IV Melanoma (read his posts if you haven't already). Most cancer trials result in many AE's caused by the treatment and are ultimately not successful. This paticular drug is unique in its method of action and it directly lyses injected lesions and appears to arm the immune system by releasing the un-denatured antigens (the markers of the mutations) so that T-cells can be trained to find other traces of cancer with the same antigens. This mimics normal immune responses (when they are successful).  Best wishes to you and your Father in Law.

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