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Yervoy

  • Post
    Krystal8808
    Participant

      Hey,   I'm writing this post about my mom she was diagnosed with stage 4 melanoma on September 4, 2014. So far it has only spread to her lymp nodes under the right arm and around her breast and the nodes between her lungs but not her lungs. She started Mekinist/Tafinilar October 6, 2014 and it all shrunk about 75%. On Christmas Eve she noticed new swelling under her left arm below the arm pit and then yesterday she has new swelling on the right shoulder near the neck. She has a doctor appointment on Wednesday to talk about Yervoy but I'm so scared it's too late for that and that the melanoma is spreading really fast as a side effect from the Mek/taf combo. If any one has any information I would appreciate it. All this has came on so fast. Thanks

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        Sfern5
        Participant

          Sorry to hear about the diagnosis, but it is definitely not too late!  There is hope!  I had a 6 cm tumor blocking my entire lung three years ago.  It's been gone for two years after Zelboraf and yervoy with only a subcutaneous reoccurance in my ribcage from a drainage tube biopsy (surgically removed the tumor).  I am grateful that I have the BRaf mutation as the zelboraf worked magic for me.  I did I have swelling in different parts of my body similar to your description while on yervoy and it was scary, but they went away.  I know that with the yervoy things flare up and get worse before they get better.  Hopefully something similar may be happening in your mom's case.  In any event, I would guess there are lots of further options for her – not a lot of fun, but very hopeful!  I'm still here and I wasn't expected to make it a year!  There is hope!

          Sfern5
          Participant

            Sorry to hear about the diagnosis, but it is definitely not too late!  There is hope!  I had a 6 cm tumor blocking my entire lung three years ago.  It's been gone for two years after Zelboraf and yervoy with only a subcutaneous reoccurance in my ribcage from a drainage tube biopsy (surgically removed the tumor).  I am grateful that I have the BRaf mutation as the zelboraf worked magic for me.  I did I have swelling in different parts of my body similar to your description while on yervoy and it was scary, but they went away.  I know that with the yervoy things flare up and get worse before they get better.  Hopefully something similar may be happening in your mom's case.  In any event, I would guess there are lots of further options for her – not a lot of fun, but very hopeful!  I'm still here and I wasn't expected to make it a year!  There is hope!

            Sfern5
            Participant

              Sorry to hear about the diagnosis, but it is definitely not too late!  There is hope!  I had a 6 cm tumor blocking my entire lung three years ago.  It's been gone for two years after Zelboraf and yervoy with only a subcutaneous reoccurance in my ribcage from a drainage tube biopsy (surgically removed the tumor).  I am grateful that I have the BRaf mutation as the zelboraf worked magic for me.  I did I have swelling in different parts of my body similar to your description while on yervoy and it was scary, but they went away.  I know that with the yervoy things flare up and get worse before they get better.  Hopefully something similar may be happening in your mom's case.  In any event, I would guess there are lots of further options for her – not a lot of fun, but very hopeful!  I'm still here and I wasn't expected to make it a year!  There is hope!

              arthurjedi007
              Participant

                Sounds like she hasn't started yervoy yet. Also without scans it is too early to say what is causing the swelling. Such swelling can be caused by many things. However that is what friends tried to tell me when literally over night the tumor in my collar went from unseen to the size of a small fist. Plus there was some swelling in the side of my neck that went away after a few days. The docs didn't believe me but yes it was overnight. Also that was when they were keeping me on the taf mek combo until I could get into Mercks Eap of pd1. Oh by the way that was late April so as long as you can keep her nutrition and spirit up she can kick this stuff in the rear too. Definitely no where near too late. That tumor in my collar is still the size of a small fist and is one of the 3 tumors still growing. But I have about 27 shrinking. 

                So yeah it could be nothing serious. She has definitely received fantastic results already. Even if this is not melanoma spreading you might want to consider an immunotherapy like yervoy then pd1 to get that long lasting response going. But that is just my opinion.

                Artie

                arthurjedi007
                Participant

                  Sounds like she hasn't started yervoy yet. Also without scans it is too early to say what is causing the swelling. Such swelling can be caused by many things. However that is what friends tried to tell me when literally over night the tumor in my collar went from unseen to the size of a small fist. Plus there was some swelling in the side of my neck that went away after a few days. The docs didn't believe me but yes it was overnight. Also that was when they were keeping me on the taf mek combo until I could get into Mercks Eap of pd1. Oh by the way that was late April so as long as you can keep her nutrition and spirit up she can kick this stuff in the rear too. Definitely no where near too late. That tumor in my collar is still the size of a small fist and is one of the 3 tumors still growing. But I have about 27 shrinking. 

                  So yeah it could be nothing serious. She has definitely received fantastic results already. Even if this is not melanoma spreading you might want to consider an immunotherapy like yervoy then pd1 to get that long lasting response going. But that is just my opinion.

                  Artie

                  arthurjedi007
                  Participant

                    Sounds like she hasn't started yervoy yet. Also without scans it is too early to say what is causing the swelling. Such swelling can be caused by many things. However that is what friends tried to tell me when literally over night the tumor in my collar went from unseen to the size of a small fist. Plus there was some swelling in the side of my neck that went away after a few days. The docs didn't believe me but yes it was overnight. Also that was when they were keeping me on the taf mek combo until I could get into Mercks Eap of pd1. Oh by the way that was late April so as long as you can keep her nutrition and spirit up she can kick this stuff in the rear too. Definitely no where near too late. That tumor in my collar is still the size of a small fist and is one of the 3 tumors still growing. But I have about 27 shrinking. 

                    So yeah it could be nothing serious. She has definitely received fantastic results already. Even if this is not melanoma spreading you might want to consider an immunotherapy like yervoy then pd1 to get that long lasting response going. But that is just my opinion.

                    Artie

                    Mat
                    Participant

                      Given the great–and very recent–results your mom has had on the combo, it seems unlikely that things would turn so rapidly.  Easier said than done, but try to keep your head (and hers) in check.  Raise with your mom's onc and she if re-scans earlier in the cycle are appropriate.

                      Mat
                      Participant

                        Given the great–and very recent–results your mom has had on the combo, it seems unlikely that things would turn so rapidly.  Easier said than done, but try to keep your head (and hers) in check.  Raise with your mom's onc and she if re-scans earlier in the cycle are appropriate.

                        Mat
                        Participant

                          Given the great–and very recent–results your mom has had on the combo, it seems unlikely that things would turn so rapidly.  Easier said than done, but try to keep your head (and hers) in check.  Raise with your mom's onc and she if re-scans earlier in the cycle are appropriate.

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