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Advice needed

› Forums › General Melanoma Community › Advice needed

  • Post
    • October 19, 2012 at 11:05 am
    sharmon
    Participant

      Brent has been on the GSK trial for 32 months and has had some real pain issures lately.  CT showed dark spots in the ribs and spine near where he has a large tumor in his side that has been there and has been stable.  It is still stable but the bones are now involved.  Either mets or fractures.  MRI is being ordered to find out.  Meanwhile he saw his Dr.

      Brent has been on the GSK trial for 32 months and has had some real pain issures lately.  CT showed dark spots in the ribs and spine near where he has a large tumor in his side that has been there and has been stable.  It is still stable but the bones are now involved.  Either mets or fractures.  MRI is being ordered to find out.  Meanwhile he saw his Dr. at MDA and we found out he can stay on the trial since there is no growth.  Pain is a real bummer and his quality of life is being effected.  Taking pills for pain around the clock keeps it in check but when they start to wear off he really hurts. 

      We know he can get into a MERCK anti pd 1 trial if he qualifies.  He needs blood work and a biopsy and a brain mri.  One of the things I need to know more about is the idea that the pd -L1 might need to be present for the pd-1 to work.

      MDA is givng us a few days to decide if he wants to drop the GSK trial while we make up our minds. If he does drop out of the trial there is no going back on,  This trial has kept him well for 32 monthss.

      The fear of the unknown is unbearable.  I have had nightmares and can't sleep.  To go or not to go.   One thought is that the GSK drug is soon to be FDA approved and if th Anti pd 1 fails and there is still time he can try that again., 

      I know melanoma is now being called by some as a manageable disease.  He has been on Leukine. IPI carbo/taxol. bio chemo, mek, mek alimta..

      We told ourselves we would stay on a treatment  until it stopped working or something better came along. 

      If anyone has any ideas or suggestion or experience I could use them.

      Praying for an answer and for all of you.

      Sharon

       

    Viewing 5 reply threads
    • Replies
        • October 19, 2012 at 12:36 pm
        awillett1991
        Participant
          I don’t have any medical advice but I will say I know what you are going through. It is so difficult when YOU have to make the medical decision, and it is impossible to know for sure what the correct path is or could have been. There are just so many unknowns. Wait until you find out if its mets or fractures, then make your decision. I will hope for you to find peace with which ever way you go.
          • October 19, 2012 at 12:36 pm
          awillett1991
          Participant
            I don’t have any medical advice but I will say I know what you are going through. It is so difficult when YOU have to make the medical decision, and it is impossible to know for sure what the correct path is or could have been. There are just so many unknowns. Wait until you find out if its mets or fractures, then make your decision. I will hope for you to find peace with which ever way you go.
            • October 19, 2012 at 12:36 pm
            awillett1991
            Participant
              I don’t have any medical advice but I will say I know what you are going through. It is so difficult when YOU have to make the medical decision, and it is impossible to know for sure what the correct path is or could have been. There are just so many unknowns. Wait until you find out if its mets or fractures, then make your decision. I will hope for you to find peace with which ever way you go.
              • October 20, 2012 at 3:40 am
              FormerCaregiver
              Participant

                Sharon, I feel that stable disease is a good sign. Therefore, if the GSK MEK drug has stopped melanoma progressing, it might be an idea for Brent to remain on it until there is some medical evidence to the contrary. The MRI scan result could therefore help you decide what to do next. 

                I wonder if surgery on the mets causing the most pain has been considered? A surgical oncologist would need to be consulted about this.

                Hope this helps.

                Frank from Australia

                • October 20, 2012 at 3:40 am
                FormerCaregiver
                Participant

                  Sharon, I feel that stable disease is a good sign. Therefore, if the GSK MEK drug has stopped melanoma progressing, it might be an idea for Brent to remain on it until there is some medical evidence to the contrary. The MRI scan result could therefore help you decide what to do next. 

                  I wonder if surgery on the mets causing the most pain has been considered? A surgical oncologist would need to be consulted about this.

                  Hope this helps.

                  Frank from Australia

                  • October 20, 2012 at 3:40 am
                  FormerCaregiver
                  Participant

                    Sharon, I feel that stable disease is a good sign. Therefore, if the GSK MEK drug has stopped melanoma progressing, it might be an idea for Brent to remain on it until there is some medical evidence to the contrary. The MRI scan result could therefore help you decide what to do next. 

                    I wonder if surgery on the mets causing the most pain has been considered? A surgical oncologist would need to be consulted about this.

                    Hope this helps.

                    Frank from Australia

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