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Here we go! Update & question…

Forums General Melanoma Community Here we go! Update & question…

  • Post
    emilypen
    Participant

    Hi all,

    So met with the oncologist today and the new CT scan shows very minimal growth on the one tumour they haven't radiated. It's the one they're leaving as is in order to guage how the trial drugs work. Is that normal? Do tumours just slow down sometimes? The radiated areas show scarring but no new cancer anywhere. PET scan results later this week.

    All the tests are done, and my husband starts the trial on Wednesday. http://clinicaltrials.gov/ct2/show/NCT01155453

    Hi all,

    So met with the oncologist today and the new CT scan shows very minimal growth on the one tumour they haven't radiated. It's the one they're leaving as is in order to guage how the trial drugs work. Is that normal? Do tumours just slow down sometimes? The radiated areas show scarring but no new cancer anywhere. PET scan results later this week.

    All the tests are done, and my husband starts the trial on Wednesday. http://clinicaltrials.gov/ct2/show/NCT01155453

    Has to spend the 24 hours in the hospital in order to make sure he has no bad reactions to the drug and they'll take his blood every hour to check for dispersion rates.

    Our fingers are crossed. I'll keep you posted.

     

    Em

     

     

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  • Replies
      Terra
      Participant

      Emily,

      I don't know whether it is normal or not I am sure someone will give you the answer.  I just wanted to hi and I hope everything continues to go well and the trial is a success.  We have not heard back yet whether or not Derek is positive for the NRAS mutation, but we will be in Toronto soon for the IL-21 trial.  I will touch base with you when we have a schedule of some sort and hoepfully we can get together for that coffee.  Terra 

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      Terra
      Participant

      Emily,

      I don't know whether it is normal or not I am sure someone will give you the answer.  I just wanted to hi and I hope everything continues to go well and the trial is a success.  We have not heard back yet whether or not Derek is positive for the NRAS mutation, but we will be in Toronto soon for the IL-21 trial.  I will touch base with you when we have a schedule of some sort and hoepfully we can get together for that coffee.  Terra 

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      jag
      Participant

      Em, where is the non radiated tumor?

      What stage is your husband?

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        emilypen
        Participant

        He is Stage IV, diagnosed at Stage IIIC in Dec 08 and then in June of this year had some chest pain and a chest xray and CT revealed a soft tissue tumour in his left upper back and 4 bone metastasis in his spine and jaw.

        They radiated the jaw and lower spine but left the soft tissue tumour. He's currently on 60mg of 12 hr slow release morphine for pain, the tumour is pressing on a nerve bundle that makes him feel like his chest is on fire and that he's having a heart attack. Luckily the morphine takes care of that,

        Em

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        jag
        Participant

        How long will the trial last?  What treatments have you had besides radiation and this trial? which tumor has been untreated?

        Are you aware of what a Stage II trials goals are?

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        emilypen
        Participant

        The trail will last until his disease progresses or the side effects are too much for him. It's actually a Phase 1b trial and yes we've fully informed. Our Oncologist believes that this is the best drug after the Roche B-Raf drug, which he qualified for but was randomized to the chemo arm of that study. Apparently the MEK inhibitor is showing similar results as the Roche drug.

        So far he has had high dose Interferon last year, obviously that didin't work…. then the chemo, didn't work, radiation has worked for pain… and if this trial doesn't work, IPI next.

        But we're hoping it will.

        fingers and toes crossed!  He started the drugs yesterday.

         

        Thanks,

        Em

         

         

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        emilypen
        Participant

        The trail will last until his disease progresses or the side effects are too much for him. It's actually a Phase 1b trial and yes we've fully informed. Our Oncologist believes that this is the best drug after the Roche B-Raf drug, which he qualified for but was randomized to the chemo arm of that study. Apparently the MEK inhibitor is showing similar results as the Roche drug.

        So far he has had high dose Interferon last year, obviously that didin't work…. then the chemo, didn't work, radiation has worked for pain… and if this trial doesn't work, IPI next.

        But we're hoping it will.

        fingers and toes crossed!  He started the drugs yesterday.

         

        Thanks,

        Em

         

         

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        jag
        Participant

        How long will the trial last?  What treatments have you had besides radiation and this trial? which tumor has been untreated?

        Are you aware of what a Stage II trials goals are?

        Loading spinner
        emilypen
        Participant

        He is Stage IV, diagnosed at Stage IIIC in Dec 08 and then in June of this year had some chest pain and a chest xray and CT revealed a soft tissue tumour in his left upper back and 4 bone metastasis in his spine and jaw.

        They radiated the jaw and lower spine but left the soft tissue tumour. He's currently on 60mg of 12 hr slow release morphine for pain, the tumour is pressing on a nerve bundle that makes him feel like his chest is on fire and that he's having a heart attack. Luckily the morphine takes care of that,

        Em

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      jag
      Participant

      Em, where is the non radiated tumor?

      What stage is your husband?

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      Lauren mom to Jenna
      Participant

      Glad he has started.  Jenna did the GSK MEK last year and was a complete responder, and the response was very quick.  Hoping that you guys see the same.  Excited to hear about the combo with PI3K too.  Jenna is now on the BRAF/MEK combo and once again her response is amazing. 

      Lauren (mom to Jenna)

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      Lauren mom to Jenna
      Participant

      Glad he has started.  Jenna did the GSK MEK last year and was a complete responder, and the response was very quick.  Hoping that you guys see the same.  Excited to hear about the combo with PI3K too.  Jenna is now on the BRAF/MEK combo and once again her response is amazing. 

      Lauren (mom to Jenna)

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