Progress on combo
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Progress on combo

› Forums › General Melanoma Community › Progress on combo

  • Post
    • November 27, 2014 at 10:33 am
    rick1981
    Participant

    Hi all,

    After the Stage IV melanoma diagnosis in early June (2 days after our daughter was born), my wife has been put on the BRAF/MEK combo with immediate results: the skin lesions disappeared in days, the first scan in August showed a significant reduction in tumor load and in October the PET scan was fully negative. We had hoped to be on our way to NED or at least to have a long run on the combo.

    However, our MD called yesterday to let us know both LDH and plasma (experimental test to identify resistence against the combo) signal disease progress. We'll see him tomorrow and then have a scan early next week.

    But it seems like the combo only lasted 5-6 months (high LDH values apparently correlate to a short impact period of the combo) and we're on to immunotherapy.

    In principle that's not a bad thing, but it just produced a big dent in my wife's optimism and strength. She was convinced that with the combo, cannabis oil, supplements, yoga etc she would beat this thing against all odd. It's still possibly, but we'll have to move to Plan B and I'll do all I can to bring back her positivity and we'll keep fighting.

    Will keep you posted,

    Rick

Viewing 8 reply threads
  • Replies
      • November 27, 2014 at 4:24 pm
      BrianP
      Participant

      So sorry Rick. Prayers to you and your wife. Very natural for your wife to feel down. I felt the same way when I progressed to stage IV after having made so many changes to diet and supplements. I know you guys will bounce back with immunotherapy. 

      • November 27, 2014 at 4:24 pm
      BrianP
      Participant

      So sorry Rick. Prayers to you and your wife. Very natural for your wife to feel down. I felt the same way when I progressed to stage IV after having made so many changes to diet and supplements. I know you guys will bounce back with immunotherapy. 

      • November 27, 2014 at 4:24 pm
      BrianP
      Participant

      So sorry Rick. Prayers to you and your wife. Very natural for your wife to feel down. I felt the same way when I progressed to stage IV after having made so many changes to diet and supplements. I know you guys will bounce back with immunotherapy. 

      • November 28, 2014 at 5:06 pm
      Jubes
      Participant

      Hi rick 

      hopefully this is just a quicker way to the immunotherapy which will really give her great results. 

      Wishing you both well

      jubes

      • November 28, 2014 at 5:06 pm
      Jubes
      Participant

      Hi rick 

      hopefully this is just a quicker way to the immunotherapy which will really give her great results. 

      Wishing you both well

      jubes

      • November 28, 2014 at 5:06 pm
      Jubes
      Participant

      Hi rick 

      hopefully this is just a quicker way to the immunotherapy which will really give her great results. 

      Wishing you both well

      jubes

      • November 28, 2014 at 7:40 pm
      arthurjedi007
      Participant

      Maybe it isn't as bad as they think. If I understand right you were happy with the October PET scan. It is just recently the doc is worried because of the LDH and this new plasma test thing.

      If so I remember talking to the clinical nurse at Sarah Cannon about LDH. She said last year they had 5 types of PD1 trials going and patients would have their LDH all over the place. Some with tumors shrinking were high LDH and vice versa. As a general rule high LDH is bad but like she said it can also mean the body is having a hard time taking out all the waste (ie destroyed cancer cells) thus high LDH.

      Some docs can overreact and be rather stupid so if I were you I would try to keep doing what you were doing when you were convinced it was working good and hope the scans turn out better than they think.

      Artie

       

      • November 28, 2014 at 7:40 pm
      arthurjedi007
      Participant

      Maybe it isn't as bad as they think. If I understand right you were happy with the October PET scan. It is just recently the doc is worried because of the LDH and this new plasma test thing.

      If so I remember talking to the clinical nurse at Sarah Cannon about LDH. She said last year they had 5 types of PD1 trials going and patients would have their LDH all over the place. Some with tumors shrinking were high LDH and vice versa. As a general rule high LDH is bad but like she said it can also mean the body is having a hard time taking out all the waste (ie destroyed cancer cells) thus high LDH.

      Some docs can overreact and be rather stupid so if I were you I would try to keep doing what you were doing when you were convinced it was working good and hope the scans turn out better than they think.

      Artie

       

        • December 1, 2014 at 9:33 am
        rick1981
        Participant

        Thanks Artie, will keep calm until this week's PET scan and maybe the LDH is not such a bad thing after all. However, our MD is doing explorative research to determine whether cell-free DNA in plasma can predict the body's resistence moment against the BRAF/MEK combo:

        http://swog.org/Visitors/Fall14GpMtg/TM/cfDNA-Kopetz-SWOG-TM-v2.pdf

        And that one was more active as well…

        Anyway, we've calmed down a bit 🙂 and hope that if there is indeed progress/growth, we can move to PD-1 quickly and that she is a responder!

        Thanks all & good luck,

        Rick

        • December 1, 2014 at 9:33 am
        rick1981
        Participant

        Thanks Artie, will keep calm until this week's PET scan and maybe the LDH is not such a bad thing after all. However, our MD is doing explorative research to determine whether cell-free DNA in plasma can predict the body's resistence moment against the BRAF/MEK combo:

        http://swog.org/Visitors/Fall14GpMtg/TM/cfDNA-Kopetz-SWOG-TM-v2.pdf

        And that one was more active as well…

        Anyway, we've calmed down a bit 🙂 and hope that if there is indeed progress/growth, we can move to PD-1 quickly and that she is a responder!

        Thanks all & good luck,

        Rick

        • December 1, 2014 at 9:33 am
        rick1981
        Participant

        Thanks Artie, will keep calm until this week's PET scan and maybe the LDH is not such a bad thing after all. However, our MD is doing explorative research to determine whether cell-free DNA in plasma can predict the body's resistence moment against the BRAF/MEK combo:

        http://swog.org/Visitors/Fall14GpMtg/TM/cfDNA-Kopetz-SWOG-TM-v2.pdf

        And that one was more active as well…

        Anyway, we've calmed down a bit 🙂 and hope that if there is indeed progress/growth, we can move to PD-1 quickly and that she is a responder!

        Thanks all & good luck,

        Rick

      • November 28, 2014 at 7:40 pm
      arthurjedi007
      Participant

      Maybe it isn't as bad as they think. If I understand right you were happy with the October PET scan. It is just recently the doc is worried because of the LDH and this new plasma test thing.

      If so I remember talking to the clinical nurse at Sarah Cannon about LDH. She said last year they had 5 types of PD1 trials going and patients would have their LDH all over the place. Some with tumors shrinking were high LDH and vice versa. As a general rule high LDH is bad but like she said it can also mean the body is having a hard time taking out all the waste (ie destroyed cancer cells) thus high LDH.

      Some docs can overreact and be rather stupid so if I were you I would try to keep doing what you were doing when you were convinced it was working good and hope the scans turn out better than they think.

      Artie

       

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