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Has anybody had IL-2 and tunnel vision?

Forums General Melanoma Community Has anybody had IL-2 and tunnel vision?

  • Post
    MariaH
    Participant

      I have a question to others who have done IL-2:  Has anybody else had tunnel vision as a side effect?  One week after Dave completed his first week of IL-2 he had an episode of tunnel vision that lasted about 20 minutes.  He checked in the following Monday for his second week of IL-2 and reported this to his onc, who ordered a brain MRI.  This came back clear.  His last dose was on Thursday, and Sunday it started again and has been consistent.  He contacted his onc, who said it could be from brain swelling.  Has anybody else had this side effect?

      I have a question to others who have done IL-2:  Has anybody else had tunnel vision as a side effect?  One week after Dave completed his first week of IL-2 he had an episode of tunnel vision that lasted about 20 minutes.  He checked in the following Monday for his second week of IL-2 and reported this to his onc, who ordered a brain MRI.  This came back clear.  His last dose was on Thursday, and Sunday it started again and has been consistent.  He contacted his onc, who said it could be from brain swelling.  Has anybody else had this side effect?

      Blessings to all the mel warriors out there,

      Maria

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    • Replies
        JerryfromFauq
        Participant

          Didn't have that from il-2, but sure do from being dragged 60 feet, kicked in the face and rolled on by a horse!  At least it was not as bad from the IL-2.  I sure hate having to stop and look at words rather than just scanning. 

             Is the peripheral vision gone or just reduced?   Mine isn't GONE, but is reduced enough that I hate the reduction.  It used to be very sharp and clear.

          The most common vision problems from IL-2 are –  changes (i.e. blurred vision or tearing of the eyes).  I have seen discussions of the possibility of other visual problems occurrig in the case of IL-2 being administered in association with peptide-based vaccines. Ref a 2005 study.)

          "the potential development of melanoma-associated retinopathy (MAR). MAR is thought to be mediated by autoantibodies directed against tumor antigens cross-reacting with
          retinal proteins, resulting in the sudden onset of night blindness, light sensations, and loss of visual acuity.21,22 To date, there have been no published reports of MAR occurring in association with peptide-based vaccines.18,23–25 However, the administration of IL-2 in conjunction with melanoma vaccines could trigger this type of autoimmune response,
          if the vaccines contain proteins or peptides derived from proteins that are also found in the retinal pigment epithelium (eg, gp100 and tyrosinase). All patients enrolled in Mel 31 and Mel
          36 had tumors that were positive for gp100 and/or tyrosinase expression, and at least 64%of the tumor cell preparations in the Mel 37 trial also expressed at least one of these proteins."

             Are you receiving the "normal" high dosage il-2 treatments or a combination of il-2 and peptide based vaccine?

          I have found no reports of tunnel vision being a side effect of il-2

            MariaH
            Participant

              Thanks for the info Jerry.  Dave is just receiving the standard IL-2.  His vision got so bad that I left work and took him to an opthamologist this morning.  It was noted that he had swelling of the optical nerve and retina.  An MRI ruled out brain mets, so they honestly don't know what's causing it.  His oncologist did say that it could be a side effect from the IL-2, but one they have never come across.  His vision has decreased (he can only see shapes now) so much that I had to help him get around the hospital.  I should note that Dave only has one eye, as he lost his left eye when he was 7 (got a stick in it).  So losing sight in his only eye is scaring the hell out of him.  As of right now, there is nothing that can be done and we are just waiting and hoping it will clear up.

              I guess time will tell.

              MariaH
              Participant

                Thanks for the info Jerry.  Dave is just receiving the standard IL-2.  His vision got so bad that I left work and took him to an opthamologist this morning.  It was noted that he had swelling of the optical nerve and retina.  An MRI ruled out brain mets, so they honestly don't know what's causing it.  His oncologist did say that it could be a side effect from the IL-2, but one they have never come across.  His vision has decreased (he can only see shapes now) so much that I had to help him get around the hospital.  I should note that Dave only has one eye, as he lost his left eye when he was 7 (got a stick in it).  So losing sight in his only eye is scaring the hell out of him.  As of right now, there is nothing that can be done and we are just waiting and hoping it will clear up.

                I guess time will tell.

              JerryfromFauq
              Participant

                Didn't have that from il-2, but sure do from being dragged 60 feet, kicked in the face and rolled on by a horse!  At least it was not as bad from the IL-2.  I sure hate having to stop and look at words rather than just scanning. 

                   Is the peripheral vision gone or just reduced?   Mine isn't GONE, but is reduced enough that I hate the reduction.  It used to be very sharp and clear.

                The most common vision problems from IL-2 are –  changes (i.e. blurred vision or tearing of the eyes).  I have seen discussions of the possibility of other visual problems occurrig in the case of IL-2 being administered in association with peptide-based vaccines. Ref a 2005 study.)

                "the potential development of melanoma-associated retinopathy (MAR). MAR is thought to be mediated by autoantibodies directed against tumor antigens cross-reacting with
                retinal proteins, resulting in the sudden onset of night blindness, light sensations, and loss of visual acuity.21,22 To date, there have been no published reports of MAR occurring in association with peptide-based vaccines.18,23–25 However, the administration of IL-2 in conjunction with melanoma vaccines could trigger this type of autoimmune response,
                if the vaccines contain proteins or peptides derived from proteins that are also found in the retinal pigment epithelium (eg, gp100 and tyrosinase). All patients enrolled in Mel 31 and Mel
                36 had tumors that were positive for gp100 and/or tyrosinase expression, and at least 64%of the tumor cell preparations in the Mel 37 trial also expressed at least one of these proteins."

                   Are you receiving the "normal" high dosage il-2 treatments or a combination of il-2 and peptide based vaccine?

                I have found no reports of tunnel vision being a side effect of il-2

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