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Is More Surgery The Only Option?
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Is More Surgery The Only Option?

› Forums › General Melanoma Community › Is More Surgery The Only Option?

  • Post
    • December 26, 2020 at 3:28 pm
    mbrrna
    Participant
      Hello again.

      A little history: In Feb 2018, my now 87-year-old mom had a large acral tumor removed from the bottom of her foot. It had also spread to her pelvis area. She became stable on Pembro, but had to stop after five treatments as she developed pneumonitis and now also has Sjögrens syndrome.

      Her quality of life since surgery hasn’t been great, as the foot is still very painful and it’s difficult to walk. She doesn’t like taking pain meds as she doesn’t like how they make her feel.

      Two weeks ago a second tumor about an inch from the original site was removed during a clinic visit, and is positive for mel – pathology shows positive margins – and now they’re talking more surgery. I just can’t bear the thought of her going through such pain again, with deeper removal and another skin graft, especially as she’s still hurting so much from the original surgery.

      She’s just had a repeat CT of the lung as they saw a nodule three months ago – but we don’t have the results yet. I seem to remember a conversation with the specialist at her initial diagnosis who said Pembro was her ONLY option (we’re in Canada). I guess I’m just wondering now if we have to put her through more surgery or whether there are other options I should try to push for and skip the surgery? If she can’t tolerate Pembro, are there any other options anyway?

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    • Replies
        • December 27, 2020 at 4:13 am
        Lilara
        Participant
          Hi, I am sorry to hear this about your mom. My mom is  in the same situation and she was also put on pembo. But it is progressing . We are in Canada too. Which hospital do you go to ? There are more clinical options but I am not sure if she can handle that. Also she can try ipi and nivo which the province won’t pay since she has not started on it . But that is also immunotherapy. So might not be the best option. I am also new to this , there are many members here with experience and might direct you to the right direction. If she is braf positive then targeted therapy might work for her . My mom is not braf positive she has Nras mutation.
          Thanks
            • December 27, 2020 at 4:33 pm
            mbrrna
            Participant
              Hi. Thanks for responding. I’m sorry your mom is in a similar situation. My mom’s being treated at Sunnybrook in Toronto. She is BRAF positive. I’ll ask about the targeted therapy and see if that’s an option. Wishing you the best. Thank you.
            • December 27, 2020 at 6:42 am
            JudiAU
            Participant
              My grandfather had a similar leg wound with many surgeries and treatments that made his last years of life painful, limited, hospital-intensive. My mom really believes that he would have had a better quality of life if they had tried to treat it less aggressively instead, and focused on quality of life. He did not need to spend all that time in surgeries and hospitals when he could have spent it with his family. As part of your consultations, you might consider speaking to a palliative doctor and asking about quality of life issues with treating vs. not treating. Will treatments prolong her life? Will she have a better quality of life with treatment or without? What does her life look like without treatment?
                • December 27, 2020 at 4:50 pm
                mbrrna
                Participant
                  Hi there. Thank you for your reply. I’m coming from the same place as your mom. I will see if she’s open to speaking with a palliative doctor as well – tough questions to ask and an even harder decision to make. Thank you again.
                • December 27, 2020 at 11:20 am
                ThinkingPositive
                Participant
                  Hi Mbbra,

                  I think about your questions often because there will become a point for all of us as we approach the end of life no matter ones age: At what point do we continue on with treatment or make our final leave.

                  Acral melanoma is a tough one. This article https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7103823/ highlights some of the challenges but doesn’t offer any other treatment options than what your mother has been offered.

                  I wish you both ease in making your decisions. Cindy

                    • December 27, 2020 at 5:06 pm
                    mbrrna
                    Participant
                      Hi Cindy. Thank you for your response and the article. As you say, acral is a tough one. Mom’s pretty reserved but we probably should be having a discussion about quality of life, versus quantity. She’s funny though and keeps moving the goal posts – after a bout with breast cancer, she said she’d be happy if she could live to 80, then after the melanoma, it was 87. Now at 87, she says 90 is a good time to go! She’s a fighter.
                    • December 27, 2020 at 9:08 pm
                    Lilara
                    Participant
                      My mom is being treated at SunnyBrook as well. I would ask about medication for BRAF. They work pretty well for a while . My mom does not respond to keytruda or pembo. So I have asked for combination therapy ipi/nivo and province denied it because she started with mono therapy . I have even offered to pay for one treatment but they are very slow in making the decision and put her on it . I am not having a good experience with Sunnybrook. I am so worried about my mom and I feel like they are taking their time. I hope your have a better experience. Hope she can tolerated the targeted therapy and works . It is very hard time. I totally understand how you feel .

                      Lila

                        • December 27, 2020 at 11:29 pm
                        mbrrna
                        Participant
                          Sorry to hear about your difficulties getting the combo therapy. I think one of the worst parts of all this is the waiting… waiting for appointments, waiting for results, waiting for treatment. My thoughts are with you and your mom.
                          • December 28, 2020 at 2:44 am
                          Mark_DC
                          Participant
                            Dear mbrrna

                            Am sorry for your mum (and you), she is in a difficult situation given the difficulties with pembro. But since she is BRAF positive targeted therapy seems a simple option. I am not BRAF positive but my understanding is that side effects may not be so large (not sure) and can be very effective, just the effects may not last. I hope your doctor will consider this as an option

                            Good luck and best wishes Mark

                            • December 28, 2020 at 1:41 pm
                            mbrrna
                            Participant
                              Thank you Mark. Will definitely ask whether targeted therapy is an option for her, rather than additional surgery.
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