PET today, SO scared
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PET today, SO scared

› Forums › General Melanoma Community › PET today, SO scared

  • Post
    • August 10, 2011 at 11:43 pm
    NYKaren
    Participant

    Had my 4th infusion of Ipi two weeks ago tomorrow.  I was originally supposed to have a pet next week & see Dr. Wolchuk the week after.  So far, only 1 small piece of mel has flaked off & I've been noticing what looks like more small somethings–mels? satellites? traveling from my mel cluster (on temple, almost to ear) toward my eye.  We're only talking about an inch, 1.5 tops.  Now there are one or 2 almost in the corner of my eye.  When Dr.

    Had my 4th infusion of Ipi two weeks ago tomorrow.  I was originally supposed to have a pet next week & see Dr. Wolchuk the week after.  So far, only 1 small piece of mel has flaked off & I've been noticing what looks like more small somethings–mels? satellites? traveling from my mel cluster (on temple, almost to ear) toward my eye.  We're only talking about an inch, 1.5 tops.  Now there are one or 2 almost in the corner of my eye.  When Dr. W first saw them, 4 weeks ago, there were only 2 or 3, and he said it might be discoloration from radiation and that he still thought my "disease was stable".  For my last infusion, he wasn't there.  I had a colleague (and friend) take a photo Monday, and I emailed it to Dr. Wolchuk & Dr. Halpern.  Dr. W's office called 10 minutes later and said that he had seen the pic & my PET was moved up to today and I'm seeing him @ 2:00 tomorrow.  

    The Fellow got on the phone and said that even though the ipi might be working (and they don't really know–I guess will know more tomorrow–maybe) it sometimes takes so long to work that other problems might develop, and that it might be time to "revisit" my treatment.  She also mentioned that I'll be seeing the surgeon.  When, I don't know–I imagine soon.  How they can do surgery so close to my eye is beyond me.

     My rash/itch is gone.  does that mean the ipi stopped working?  I'm so glad that my stomach side effects are still there.  How bizzare is that?

    I went to another doctor, completely unrelated, yesterday, and he said, "oh, stage 3, you're ok."  I pulled my hair back and showed him and he went white as a ghost.  I guess I shouldn't hate people–I should hate their ignorance, but it's hard.

    Sorry if I'm rambling, I've kept this inside since Monday and I feel like I'm gonna burst if I don't get it out.

    Comments/suggestions/advice welcome.  I'll try to post tomorrow after visit–I'm taking my husband with me.

    thanks,

    karen

Viewing 7 reply threads
  • Replies
      • August 10, 2011 at 11:52 pm
      BethA
      Participant

      I hope the PET scan was not as awful as you fear.  I'm sorry you are so stressed.  I will say a prayer for you (just because that is what I do).  Good luck with the appointment.  

      I went away this weekend visiting relatives.  Twice I was told "at least skin cancer doesn't kill anyone!!"  Well, isn't that nice to know!!  I seem to have a tolerance problem too, with stupidity.  So you are definately NOT alone.

      Good thoughts tomorrow.  And a peaceful night, knowing you have many friends here that care.     Beth 3/B 

      • August 10, 2011 at 11:52 pm
      BethA
      Participant

      I hope the PET scan was not as awful as you fear.  I'm sorry you are so stressed.  I will say a prayer for you (just because that is what I do).  Good luck with the appointment.  

      I went away this weekend visiting relatives.  Twice I was told "at least skin cancer doesn't kill anyone!!"  Well, isn't that nice to know!!  I seem to have a tolerance problem too, with stupidity.  So you are definately NOT alone.

      Good thoughts tomorrow.  And a peaceful night, knowing you have many friends here that care.     Beth 3/B 

      • August 11, 2011 at 12:36 am
      Jan in OC
      Participant

      I don't have any advice or suggestions, just good thoughts to send you.  I hope your PET went ok. My husband is Stage 4 and I have days that I become crazy! Thank God the people on here are always ready to listen.

      I do understand about ignorant people.  Even the nurses in the Melanoma center get stupid every now and then.  We went to a new Melanoma center yesterday, the nurse came in and told my husband how good he looked and asked him what he was there for…he pulled his shirt up and she went ooooooohhhhh (his right side is covered in large black spots)!  He told her "We just came by for the view"!!

      Hang in there!

      Jan in OC

      • August 11, 2011 at 12:36 am
      Jan in OC
      Participant

      I don't have any advice or suggestions, just good thoughts to send you.  I hope your PET went ok. My husband is Stage 4 and I have days that I become crazy! Thank God the people on here are always ready to listen.

      I do understand about ignorant people.  Even the nurses in the Melanoma center get stupid every now and then.  We went to a new Melanoma center yesterday, the nurse came in and told my husband how good he looked and asked him what he was there for…he pulled his shirt up and she went ooooooohhhhh (his right side is covered in large black spots)!  He told her "We just came by for the view"!!

      Hang in there!

      Jan in OC

      • August 11, 2011 at 2:57 am
      FormerCaregiver
      Participant

      Scan anxiety or "scanxiety" is certainly something that many people here are very familiar with, either as a patient or caregiver. So, we know how you might be feeling at the moment and unfortunately this is just part of what the battle against melanoma involves.

      It is difficult to say how well ipi (Yervoy) is working, but the PET scan will give us a very good idea.

      They can do amazing things with surgery these days, so I hope that the surgeon is able to help you.

      Wishing you good luck with the scan.

      Frank from Australia

      • August 11, 2011 at 2:57 am
      FormerCaregiver
      Participant

      Scan anxiety or "scanxiety" is certainly something that many people here are very familiar with, either as a patient or caregiver. So, we know how you might be feeling at the moment and unfortunately this is just part of what the battle against melanoma involves.

      It is difficult to say how well ipi (Yervoy) is working, but the PET scan will give us a very good idea.

      They can do amazing things with surgery these days, so I hope that the surgeon is able to help you.

      Wishing you good luck with the scan.

      Frank from Australia

      • August 11, 2011 at 12:15 pm
      jim Breitfeller
      Participant

      Karen, you may want to ask Dr. Wolchok about Imiquimod (AldaraTM, 3M Pharmaceuticals)

      Imiquimod also has antitumor activity, which might stem from the drug’s ability to stimulate a cell-mediated immune response. Application of imiquimod also leads to the release of IL-12, tumor necrosis factor α, and interferon α, which inhibit angiogenesis and increase cytotoxic T cells and natural killer cells.

      Imiquimod also up-regulates IL-2, which down-regulates IL-10, thus reversing the suppression of antitumor Tcells.                                                      

      You can apply the cream to your  face to stimulate the local immune system at the point of contact.      

             Best regards,                              

      Jimmy B                                                                                                  

      • August 11, 2011 at 12:15 pm
      jim Breitfeller
      Participant

      Karen, you may want to ask Dr. Wolchok about Imiquimod (AldaraTM, 3M Pharmaceuticals)

      Imiquimod also has antitumor activity, which might stem from the drug’s ability to stimulate a cell-mediated immune response. Application of imiquimod also leads to the release of IL-12, tumor necrosis factor α, and interferon α, which inhibit angiogenesis and increase cytotoxic T cells and natural killer cells.

      Imiquimod also up-regulates IL-2, which down-regulates IL-10, thus reversing the suppression of antitumor Tcells.                                                      

      You can apply the cream to your  face to stimulate the local immune system at the point of contact.      

             Best regards,                              

      Jimmy B                                                                                                  

        • August 11, 2011 at 5:33 pm
        killmel
        Participant

        Hi jim,

         

        Thank you for all the info you suggest to us.

        I have heard of aldara.

        Does aldara work on Subq's (lumps) "beneath" the skin or just "skin" cutaneous based melanoma.

        I have a small lump under my skin but the lump is poking through my skin. Would aldara be effective on my subq lump if I rubbed  aldara into the lump?? There is no melanoma color on the top of the lump…just skin color.

        Thanks for your help.

        Mary

        • August 11, 2011 at 5:33 pm
        killmel
        Participant

        Hi jim,

         

        Thank you for all the info you suggest to us.

        I have heard of aldara.

        Does aldara work on Subq's (lumps) "beneath" the skin or just "skin" cutaneous based melanoma.

        I have a small lump under my skin but the lump is poking through my skin. Would aldara be effective on my subq lump if I rubbed  aldara into the lump?? There is no melanoma color on the top of the lump…just skin color.

        Thanks for your help.

        Mary

        • August 11, 2011 at 8:30 pm
        NYKaren
        Participant

        Thanks, Jim & everyone,

        I didn't see this till today (my b'berry isn't working too well.) Dr.  Wolchuk won't let me use anything with the Ipi, but it's good to know about, because he did mention IL-2 if the Ipi doesn't work–I'll post an update.

        • August 11, 2011 at 8:30 pm
        NYKaren
        Participant

        Thanks, Jim & everyone,

        I didn't see this till today (my b'berry isn't working too well.) Dr.  Wolchuk won't let me use anything with the Ipi, but it's good to know about, because he did mention IL-2 if the Ipi doesn't work–I'll post an update.

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