Metastatic Melanoma Stage 4

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  • Post
    • February 21, 2014 at 2:47 pm
    suzette12
    Participant

      Hello,

      My husband was diagnosed in November of having stage four Metastatic Melanoma. A very small spot found on his left lower lung and a lesion on his spine.  The spot on his lung was sent for a biopsy  but it was so small that they cannot determine if he carries a melanoma gene.   He is now on Yervoy treatment.  He has had two infusions and is having terrible side effects.  In fact, they had to cancel his third infusion this week because of his side effects (swelling in the ribs-supposedly caused by an increase in the growth of the lung tumor which is attaching to nerve endings), eye irritation and rash).  His pain is over the top.  No plan to remove the tumor, they simply put him on a steroid to decrease the swelling.  Can anyone relate with these side effects and are they normal?  We live in a small town with very little experience of this disease and Yervoy treatment.

      Any advice would be a blessing.  I'm very scared for him (us).

      Thanks.

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    • Replies
        • February 21, 2014 at 3:07 pm
        jmmm
        Participant

          The explanation sounds plausible, but please, please get to larger cancer center with a melanoma specialist!  Get there as fast as you can and do not wait.  Yervoy and the other new melanoma drugs are new.  The side effects are numerous, dangerous, and can be deadly if the doctor is not familiar with them.  Your husband is fighting for his life and you need the most qualified doctors working with you in this fight.

          • February 21, 2014 at 3:07 pm
          jmmm
          Participant

            The explanation sounds plausible, but please, please get to larger cancer center with a melanoma specialist!  Get there as fast as you can and do not wait.  Yervoy and the other new melanoma drugs are new.  The side effects are numerous, dangerous, and can be deadly if the doctor is not familiar with them.  Your husband is fighting for his life and you need the most qualified doctors working with you in this fight.

            • February 21, 2014 at 3:07 pm
            jmmm
            Participant

              The explanation sounds plausible, but please, please get to larger cancer center with a melanoma specialist!  Get there as fast as you can and do not wait.  Yervoy and the other new melanoma drugs are new.  The side effects are numerous, dangerous, and can be deadly if the doctor is not familiar with them.  Your husband is fighting for his life and you need the most qualified doctors working with you in this fight.

                • February 21, 2014 at 4:58 pm
                arthurjedi007
                Participant

                  Yes. Get to a good melanoma place immediately.

                  Also before each dose they should have been doing blood work carefully checking his numbers to ensure it is ok for the dose. I always got my copy so I could check it myself too.

                  Also was it just a MRI that spotted those 2 spots or did they do a PET? If they did not do a PET then he probably has more spots. If they did a PET then it sounds like they have done good so far.

                  Yervoy is good but the staff needs to be experienced. Also they told me to call if any side affect lasted more than 24 hours so they could get right to treating it.

                  Basically the steroids is to try to tone down the immune response ipi is possibly having. At least that is what they told me if I started having issues like for colitis and things which I didn't but I wanted to know up front what they would do if I did.

                  • February 21, 2014 at 4:58 pm
                  arthurjedi007
                  Participant

                    Yes. Get to a good melanoma place immediately.

                    Also before each dose they should have been doing blood work carefully checking his numbers to ensure it is ok for the dose. I always got my copy so I could check it myself too.

                    Also was it just a MRI that spotted those 2 spots or did they do a PET? If they did not do a PET then he probably has more spots. If they did a PET then it sounds like they have done good so far.

                    Yervoy is good but the staff needs to be experienced. Also they told me to call if any side affect lasted more than 24 hours so they could get right to treating it.

                    Basically the steroids is to try to tone down the immune response ipi is possibly having. At least that is what they told me if I started having issues like for colitis and things which I didn't but I wanted to know up front what they would do if I did.

                    • February 21, 2014 at 4:58 pm
                    arthurjedi007
                    Participant

                      Yes. Get to a good melanoma place immediately.

                      Also before each dose they should have been doing blood work carefully checking his numbers to ensure it is ok for the dose. I always got my copy so I could check it myself too.

                      Also was it just a MRI that spotted those 2 spots or did they do a PET? If they did not do a PET then he probably has more spots. If they did a PET then it sounds like they have done good so far.

                      Yervoy is good but the staff needs to be experienced. Also they told me to call if any side affect lasted more than 24 hours so they could get right to treating it.

                      Basically the steroids is to try to tone down the immune response ipi is possibly having. At least that is what they told me if I started having issues like for colitis and things which I didn't but I wanted to know up front what they would do if I did.

                      • February 21, 2014 at 6:11 pm
                      suzette12
                      Participant

                        No. Never a PET scan.  I thought that was kindof odd?  I've called Boston today and we have a plan to follow-up on all of his issues.  I'm only hoping that it is in time.

                        • February 21, 2014 at 6:11 pm
                        suzette12
                        Participant

                          No. Never a PET scan.  I thought that was kindof odd?  I've called Boston today and we have a plan to follow-up on all of his issues.  I'm only hoping that it is in time.

                          • February 21, 2014 at 6:11 pm
                          suzette12
                          Participant

                            No. Never a PET scan.  I thought that was kindof odd?  I've called Boston today and we have a plan to follow-up on all of his issues.  I'm only hoping that it is in time.

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