The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Update on Yervoy reinduction and PD1 trial frustration

Forums General Melanoma Community Update on Yervoy reinduction and PD1 trial frustration

  • Post
    NYKaren
    Participant

    Maybe the 3rd time typing this will be the charm.

    Maybe the 3rd time typing this will be the charm.

    I had my 3rd infusion on Thursday, and right after that my diahrrea went from controlled by Budesonine to having to add a 2 week course of Prednisone, to yesterday landing in the hospital.  Long story short, after much Dilaudid, CT scan and IV stroids, I have colitis and am now on 60 mg. Pred. 2x/day in addition to the Budesonine. Tapering hasn't been discussed yet.  Fourth infusion might be postponed if I get it at all.  He did say that we were looking for an imminune response, and we definately got it. At least i have until week 16 to finish Yervoy, and 4th infusion is usually at week 10, so I have 6 weeks to get over this. Also really bland diet–that helps a lot.

    I have stage IIIc unresectable mel.  The areas that have mets large enough to qualify me for the new cohort of the BMS trial are on site on my scalp that was originally irradiated.So they don't count.  From my scalp down  my neck are mel satellite mets,  but none of the "fresh" ones are big enough!  Frustrating unless next PET scan shows more mel, which wouldn't be so good either.   

    So tomorrow I go back to Dr. Halpern so he can continue freezing and we will probably add aldera.  I am insisting that leave the two largest mets alone to see if they grow large enough for the trial.    Good news is that the tweezed eyebrows that are growing back in are white.  Dr. Wolchok is very happy about that.

    I know I'm hanging my hat on a trial and that's pretty crazy.  I wonder if they continue to have good results on the Merck and BMS trias, how long it would take to get FDA approval?  Can any of the more experienced members here even hazard a guess?  A year, five, ten??

    If you've gotten this far, thanks for reading.  any input appreciated.

    thanks,

    karen

Viewing 2 reply threads
  • Replies
      aldakota22
      Participant

      Trying this again.You are one tough cookie.Hope it only gets better for you from here on.Sending prayers your way.Always looking for your posts.  Al

        NYKaren
        Participant
        Al, you have no idea how much your kind words mean to me tonight.
        It helps remind me how much others’ support can lift spirits. Also I think the steroids are doing a number on my head!
        Also, upon re-reading I see I was unclear/rude…the “he” to whom I refer in 1st para. is Dr. Wolchok.
        karen

        aldakota22
        Participant

        I am sure everybody on this site feels the same way I do.Just kind words can lift the spirits.Something that helps me thru   rare moments I allow myself to be down.Wish I could do more   Al

        Karin L
        Participant

        I don't think you are crazy at all Karen.  I keep asking (ok, bugging) my onc. about the PD-1 trials and keep pressing him to make sure they try to get them.  It's in the near future I hear from him.  When the time comes I need to go back on systemic treatment I hope to qualify and hope it's available.  It does sound so promising and makes it so frustrating in the meantime.

        Karin

        Karin L
        Participant

        I don't think you are crazy at all Karen.  I keep asking (ok, bugging) my onc. about the PD-1 trials and keep pressing him to make sure they try to get them.  It's in the near future I hear from him.  When the time comes I need to go back on systemic treatment I hope to qualify and hope it's available.  It does sound so promising and makes it so frustrating in the meantime.

        Karin

        Karin L
        Participant

        I don't think you are crazy at all Karen.  I keep asking (ok, bugging) my onc. about the PD-1 trials and keep pressing him to make sure they try to get them.  It's in the near future I hear from him.  When the time comes I need to go back on systemic treatment I hope to qualify and hope it's available.  It does sound so promising and makes it so frustrating in the meantime.

        Karin

        aldakota22
        Participant

        I am sure everybody on this site feels the same way I do.Just kind words can lift the spirits.Something that helps me thru   rare moments I allow myself to be down.Wish I could do more   Al

        aldakota22
        Participant

        I am sure everybody on this site feels the same way I do.Just kind words can lift the spirits.Something that helps me thru   rare moments I allow myself to be down.Wish I could do more   Al

        NYKaren
        Participant
        Al, you have no idea how much your kind words mean to me tonight.
        It helps remind me how much others’ support can lift spirits. Also I think the steroids are doing a number on my head!
        Also, upon re-reading I see I was unclear/rude…the “he” to whom I refer in 1st para. is Dr. Wolchok.
        karen

        NYKaren
        Participant
        Al, you have no idea how much your kind words mean to me tonight.
        It helps remind me how much others’ support can lift spirits. Also I think the steroids are doing a number on my head!
        Also, upon re-reading I see I was unclear/rude…the “he” to whom I refer in 1st para. is Dr. Wolchok.
        karen

      aldakota22
      Participant

      Trying this again.You are one tough cookie.Hope it only gets better for you from here on.Sending prayers your way.Always looking for your posts.  Al

      aldakota22
      Participant

      Trying this again.You are one tough cookie.Hope it only gets better for you from here on.Sending prayers your way.Always looking for your posts.  Al

Viewing 2 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

Popular Topics