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Stage IV out of options?
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Stage IV out of options?

› Forums › General Melanoma Community › Stage IV out of options?

  • Post
    • January 3, 2014 at 2:17 am
    Hopeful29
    Participant

      My mother was improving after taking 2 types of chemo meds for her MEK gene. She also had successful whole brain radiation for her brain met. After WBR, she had little mobility in her legs but was regaining strength and was able to get around with a walker. This has been on going since this summer. Last week, she could no longer move her legs. We took her to the hospital. They did the scans and found a large tumor on her thoracic spine. This was why she couldn't walk. Seems so obvious now. Why wouldn't they have ever checked her spine in the first place? These are supposed to be the best doctors at the university of Penn!! Her tumors have also grown back, larger than before (spleen, adrenal glands, brain, spine, lymph nodes, soft tissue around her lungs, bowels, etc.). It sounds like her Dr. Is giving up. Told us that there is an approved med but it's been less successful than her MEK meds that stopped working and she's ineligible for anti-pd1. Try to keep her comfortable. 

      What can I do? I can't just sit here while she's dying. I know there's another route. She's a good responder to radiation and chemo. I don't understand. 

      If anyone has any suggestions, please help me. 

    Viewing 8 reply threads
    • Replies
        • January 3, 2014 at 3:24 am
        POW
        Participant

           

          I am so sorry that you and your mother have to go through this. It is really, really hard– I know and my heart goes out to you.

          What did your mother say about these developments? What does your mother want to do? Much as you love her and don't want to lose her, the most loving thing you can do is find out what she really wants and, if possible, make it happen.

           

          • January 3, 2014 at 3:24 am
          POW
          Participant

             

            I am so sorry that you and your mother have to go through this. It is really, really hard– I know and my heart goes out to you.

            What did your mother say about these developments? What does your mother want to do? Much as you love her and don't want to lose her, the most loving thing you can do is find out what she really wants and, if possible, make it happen.

             

            • January 3, 2014 at 3:24 am
            POW
            Participant

               

              I am so sorry that you and your mother have to go through this. It is really, really hard– I know and my heart goes out to you.

              What did your mother say about these developments? What does your mother want to do? Much as you love her and don't want to lose her, the most loving thing you can do is find out what she really wants and, if possible, make it happen.

               

              • January 3, 2014 at 2:39 pm
              Tina D
              Participant

                I am sorry, and can imagine how distressing this advice was to receive.Do you know what the "approved med" he mentions is?  I have always been ready to go for a second opinion in these type situations and I venture to guess there may be another good mel specialist close enough that you could get her in to that may offer some fresh perspective.  I have had specialists who took very different approaches from each other, and have benefited from seeing more than one over the years. 

                I hope you find some good answers for you both,

                Tina

                • January 3, 2014 at 2:39 pm
                Tina D
                Participant

                  I am sorry, and can imagine how distressing this advice was to receive.Do you know what the "approved med" he mentions is?  I have always been ready to go for a second opinion in these type situations and I venture to guess there may be another good mel specialist close enough that you could get her in to that may offer some fresh perspective.  I have had specialists who took very different approaches from each other, and have benefited from seeing more than one over the years. 

                  I hope you find some good answers for you both,

                  Tina

                  • January 3, 2014 at 2:39 pm
                  Tina D
                  Participant

                    I am sorry, and can imagine how distressing this advice was to receive.Do you know what the "approved med" he mentions is?  I have always been ready to go for a second opinion in these type situations and I venture to guess there may be another good mel specialist close enough that you could get her in to that may offer some fresh perspective.  I have had specialists who took very different approaches from each other, and have benefited from seeing more than one over the years. 

                    I hope you find some good answers for you both,

                    Tina

                    • January 3, 2014 at 5:01 pm
                    jack6020
                    Participant

                      I also have stage 4 melemona and couldn't use the left side of my body. I had 7 tumers in my brain. They removed 3 of them and did a gamma knife procedure for the other 4. I then received 2 of 4 infusions of Yervoy. So far so good (both sides of my body work now) , but still have weakness. maybe gamma knife or Yervoy will work for her. Can't hurt to try.

                      • January 3, 2014 at 5:01 pm
                      jack6020
                      Participant

                        I also have stage 4 melemona and couldn't use the left side of my body. I had 7 tumers in my brain. They removed 3 of them and did a gamma knife procedure for the other 4. I then received 2 of 4 infusions of Yervoy. So far so good (both sides of my body work now) , but still have weakness. maybe gamma knife or Yervoy will work for her. Can't hurt to try.

                        • January 3, 2014 at 5:01 pm
                        jack6020
                        Participant

                          I also have stage 4 melemona and couldn't use the left side of my body. I had 7 tumers in my brain. They removed 3 of them and did a gamma knife procedure for the other 4. I then received 2 of 4 infusions of Yervoy. So far so good (both sides of my body work now) , but still have weakness. maybe gamma knife or Yervoy will work for her. Can't hurt to try.

                      Viewing 8 reply threads
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