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  • This topic has 5 replies, 3 voices, and was last updated 7 years ago by ECHO.
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      hi everyone,
      my mother suffers from mucosal melanoma now and we couldn't find an effective drug. because of this disease, her right face swells for over five months. we've tried PD-1,and PD-1& yervoy combo, but they didn't work. She did a genetic test. It’s a ctDNA test using NGS. The result shows that there’re 4 genes mutated out of 66
      MAP2K1 c.199G>A(p.D67N)
      GNA11  c.547C>T  (p.R183C)
      NRAS   c.182A>G  (p.Q61R)
      KIT    c.1961T>C  (p.V654A)
      As recommended, she took cotellic&PDL-1, but sadly, it didn’t work either. I felt that we were running out of our way to cure the disease. So can anyone give some suggestion? I really appreciate!!

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          If you mom has the cKIT mutation, she could take Gleevec.  If you search old posts, there is a man here named Jerry from Fauq that survived for a long time on Gleevec.  I know that there are clinical trials for NRAS mutations with MEK inhibitors on Bubble's blog, and that could be a great resource as well. 

          My mom has mucosal melanoma too and had to stop after one dose of Keytruda and one dose of the combo due to toxicities.  Her doctor currently has her on chemotherapy (Abraxane) that she is tolerating well.  We scan this Saturday, so I can update and let you know if it is working.  We were worried about doing the chemo at first because of side effects, but other than losing some hair, she doesn't have many side effects.  However, from what I've been told, Abraxane is not a chance for cure, it's just to buy some time to the next treatment.  Still, another option to discuss with your mom's doctor.

          Also, are you part of the mucosal melanoma facebook group?  It's a good resource for mucosal melanoma patients and caregivers since the disease is genetically different than cutaneous melanoma.


              hi cindy,

              I really appreciate your information! I will look through Jerry's post as well as Bubble's blog to see if there's any new information. I'm glad your mother well tolerates abraxane, and I hope to hear some good news on her scan! As your mother can't tolerate Ketruda, is it possible for her to try Opdivo? Coz i knew some patients that act differently to these two drugs. Also,IDO is also an option. There're some clinical trials. Best wishes! Echo



              Hi Echo,

              I hope this story will help you.

              My father has nasal mucosal melanoma originally diagnosed in 2007.  He progressed to Stage IV last year with metastasis to lungs, pancreas and abdomen.  No symptoms, but found on routine scans. He tried single agent Opdivo (aka Nivolumab) and finished all infusions and had minimal side effects but the scans showed progression in the tumors that were already there and he had some new spots on the liver, adrenal glands and brain. Sigh…

              Next plan, he then switched to Yervoy (aka Ipi) and Temodar and after just 1 infusion of Ipi his LDH levels were halved (it peaked at 1300+).  Our jaws dropped with delight!!  All blood test and side effects were minimal again luckily and he was able to finish all 4 infusions (finishing at the end of Feb).  His scans post treatment showed significant reduction and in some cases resolution of his tumors so we feel really fortunate to get these results. The doctors are monitoring his blood at this point to check his levels and he's continuing to take Temodar only for his brain mets.  We'll scan again in the coming weeks to see if the Ipi is still working and if we need to re-introduce it.

              Needless to say we are very, very grateful for his results and he’s enjoying his new found energy and appetite.




                  My post about Opdivo is not meant to discourage you or imply that it doesn't work for mucosal melanoma.  My point is that you never know what treatment will work because it really depends on the individual. Even though it didn't work for my father, Opdivo has worked for lots and lots of people.

                  I forgot to mention, but back in 2007, my father was tested for cKIT and he did have the mutation.  He took Nexavar (similar to Gleevec) and Temodar for 6 months as a adjunctive treatment and we aren't sure to what extent the benefit was because he was Stage 3 for 6yrs before he had his 1st local recurrance.

                  My father was also diagnosed with colon cancer and went through surgery and chemo treatment 3 yrs ago so his journey has been a bit bumpy but we're still rolling along.

                  Stay rolling!



                    Hi JYC,

                    So great to hear from you. Your father's story is quite inspiring! I  I strongly agree that one will never know if a drug works unless actually try it. I believe"keep trying"is the key to overcome the disease.  But I don't have many options now. As you can see, my mother has already tried yervoy+opdivo, and it didn't work after two infusions. So I'm afraid that I have to count on targeted medicine or chemo therapy, but I don't know which is the right one and you know, they're not long-term choices. But I will never ever give up. As you've said, stay rolling!

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