The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Weighing options

Forums General Melanoma Community Weighing options

  • Post
    jrtufo
    Participant

      Hi all-stage 3B here with unresectable cancer still in the parotid due to location (practically kissing my facial nerve).  So after visiting 3 cancer centers the docs are all in agreement that they can't surgically remove the bits of bad left behind, and they can't radiate it (for the same reason).  Keytruda seems to be the best action, but I'm having a hard time with the decision.  I'm super healthy, live a very active lifestyle, I don't know HOW to be sick. It took 19 years for the primary to revisit me and given the lack of enthusiasm with my survival rates changing because of trying Keytruda I'm wondering if this is the right time.  Is waiting ever a smart idea?

      Loading spinner
    Viewing 5 reply threads
    • Replies
        jennunicorn
        Participant
          NED

          I wouldn't wait. With surgery not an option, there's no reason to let cancer sit and grow without taking some action. Keytruda is a good idea and there is a good chance you won't deal with major side effects. It doesn't make you sick. Most of us work and go about normal life while on immunotherapy. If a bad side effect comes up, you'll let your onc know right away and get it taken care of quickly. It will likely kick the cancer to the curb and maybe you'll only need to be on it for 6 months or so. I'm on treatment, still active, work full time, haven't dealt with any major side effects. Take care of it now and then you'll be done with it a lot faster than if you let it spread further. 

          Loading spinner
          stevenallenschwartz
          Participant

            I suggest you take Keytruda if you are lucky enough to get it. I have had minimal side effects with unresectable mel stage 4 and it looks like it is saving my life….

             

            Loading spinner
            debwray
            Participant

              Another vote for starting immunotherapy.. Also ask about recurrence rates for your stage… This might help you decide….

              Deb

              Loading spinner
              J.bun
              Participant

                I didn't know how to be sick either… but then reality sets in. Melanoma is aggressive and can spread quickly – I think it is better to treat proactively. 

                Loading spinner
                MikeW
                Participant

                  I started Keytruda 8 weeks ago after some debate over the treatment approach. I'm actually healthier now than when I started the treatment as I'm on a better diet, started running again and lifting. My side effects are the rash and itching which are manageable. 

                  Kick it's ass…

                   

                  Loading spinner
                    jrtufo
                    Participant

                      Thank you all.  What positive feedback!  You all have really helped me with this decision.  Still waiting on insurance approval, but my doc (Medina at Univ. of Colo) seems to think it'll be a go due to the limited options I have with this desmoplastic mel.  I know that people with really great results and those with terrible side effects are the most likely to review the drug, hopefully I'll be on the great results side of things.  

                      I don't know why this posted as anon-when I report in again you'll see it as JulieT

                       

                      Loading spinner
                    AliCat61
                    Participant

                      My husband's melanoma recurred in his parotid gland and also a small spot on his lung, making him Stage IV. The tumor on his face grew rather quickly while we were waiting for the results of his BRAF test and approval for Insurance for combo treatments with Opdivo and Yervoy. About 4 days after his first treatment, he woke up in tremendous pain.  The tumor had gotten even larger and was probably pressing on a nerve. Norco couldn't even touch his pain. Fortunately, it looks as though the cancer was "fighting back" and making a last hurrah so to speak. After a couple of days of intense pain, it stopped as suddenly as it started, and the tumor has been shrinking steadily ever since. So I vote for Keytruda as soon as possible. My husband's side effects so far have been minimal and the benefit has been clear. I realize that everyone response is different and you'd be taking a different medication (similar to the Opdivo) but it really could save your life and save you from pain. 

                      Loading spinner
                        jrtufo
                        Participant

                          Thanks all.  Keytruda infusions to begin in two weeks.  Wish me luck:)

                          Loading spinner
                    Viewing 5 reply threads
                    • You must be logged in to reply to this topic.
                    About the MRF Patient Forum

                    The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                    The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.