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Anyone out there on the Oncovex trial?
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Anyone out there on the Oncovex trial?

› Forums › General Melanoma Community › Anyone out there on the Oncovex trial?

  • Post
    • June 11, 2011 at 7:11 pm
    Janis B.
    Participant

      I had my second Oncovex injection a week and a half ago.  Now experiencing hair loss.  Anyone know anything about this?  It's not listed as a side effect, but then, it's a trial drug, so who knows.  Thanks for any and all feedback (including sympathy – 2nd go-around for hair loss 🙂

      I had my second Oncovex injection a week and a half ago.  Now experiencing hair loss.  Anyone know anything about this?  It's not listed as a side effect, but then, it's a trial drug, so who knows.  Thanks for any and all feedback (including sympathy – 2nd go-around for hair loss 🙂

    Viewing 3 reply threads
    • Replies
        • June 12, 2011 at 4:44 pm
        MichaelFL
        Participant

          I believe Sharyn was on the ONCOVEX/GM-CSF trial at one point. I believe June/July 2009, and that she was randomised to the GM-CSF arm? Sadly, she is no longer with us.

          I did some searches and could not find hair loss listed as a side effect either.

          Good luck,

          Michael

            • June 13, 2011 at 1:41 am
            Janis B.
            Participant

              It is always heartbreaking to remember those from this board who did not survive.  I do remember Sharyn, and I wrote down her last post because of the courage and even joy that she showed as she went to hospice (I believe this is the Sharyn you're refering to).

              Anyway, I thank you for researching and responding.  Hair loss is minor next to all else we face, but it's just something I wanted to check out.

              Good luck to all of us, whether we're sweating out a clinical trial, intolerable treatment, or the ever-present watching and waiting!!

              • June 13, 2011 at 1:41 am
              Janis B.
              Participant

                It is always heartbreaking to remember those from this board who did not survive.  I do remember Sharyn, and I wrote down her last post because of the courage and even joy that she showed as she went to hospice (I believe this is the Sharyn you're refering to).

                Anyway, I thank you for researching and responding.  Hair loss is minor next to all else we face, but it's just something I wanted to check out.

                Good luck to all of us, whether we're sweating out a clinical trial, intolerable treatment, or the ever-present watching and waiting!!

              • June 12, 2011 at 4:44 pm
              MichaelFL
              Participant

                I believe Sharyn was on the ONCOVEX/GM-CSF trial at one point. I believe June/July 2009, and that she was randomised to the GM-CSF arm? Sadly, she is no longer with us.

                I did some searches and could not find hair loss listed as a side effect either.

                Good luck,

                Michael

                • June 13, 2011 at 2:50 pm
                nicoli
                Participant

                  Sorry Janis, no sympathy from me !!

                  I now have PERMANENT hair loss from radiation to my scalp. Whole head bald except for a "monk's band" around my ears and back of head. 

                  One good thing: now when I tell people that I am permanently bald, they seem to realize that this skin cancer is actually serious. Before they just didn't get it.

                  If I had a nice head, I might consider just putting on makeup and earrings and just going around bald. But with surgery scars, that is too scary for most people to handle so I have to go the wig/scarf route.

                  Nicki, Stage 3b

                    • June 18, 2011 at 12:32 am
                    Janis B.
                    Participant

                      Nikki, that is a tough situation to deal with and I thank you so much for writing and sharing. And I know exactly what you mean – no one seems to understand the depth and breadth of our illness, until it's visible.  We are not usually on chemo or radiation, we generally don't lose our hair, and we often look fairly healthy until … well, we aren't.  I've never been a whiner or a complainer. but I love to be able to share my feelings here and to give support where I can.  So, here's to you – to your strength and your courage to get up and suit up and put on your scarf and write on this board!!

                      Janis

                      IIIC, Cycle 2, Oncovex Trial

                       

                      • June 18, 2011 at 12:32 am
                      Janis B.
                      Participant

                        Nikki, that is a tough situation to deal with and I thank you so much for writing and sharing. And I know exactly what you mean – no one seems to understand the depth and breadth of our illness, until it's visible.  We are not usually on chemo or radiation, we generally don't lose our hair, and we often look fairly healthy until … well, we aren't.  I've never been a whiner or a complainer. but I love to be able to share my feelings here and to give support where I can.  So, here's to you – to your strength and your courage to get up and suit up and put on your scarf and write on this board!!

                        Janis

                        IIIC, Cycle 2, Oncovex Trial

                         

                      • June 13, 2011 at 2:50 pm
                      nicoli
                      Participant

                        Sorry Janis, no sympathy from me !!

                        I now have PERMANENT hair loss from radiation to my scalp. Whole head bald except for a "monk's band" around my ears and back of head. 

                        One good thing: now when I tell people that I am permanently bald, they seem to realize that this skin cancer is actually serious. Before they just didn't get it.

                        If I had a nice head, I might consider just putting on makeup and earrings and just going around bald. But with surgery scars, that is too scary for most people to handle so I have to go the wig/scarf route.

                        Nicki, Stage 3b

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