advice treatment
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advice treatment

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  • Post
    • November 27, 2016 at 7:12 pm
    lmccann2016
    Participant
    Hi everyone some of you know me. So i will quickly let others know my situation. Stage 3 melanoma

    Initial tumor was 4.7 mm depth 2cm vertical. Mitoic rate 7 margin clear by 0.3

    Had wle and found 2.9mm more same tumor not reoccurance.

    Had neck discetion as primary back of neck and had 4 out of 40 nodes cancer but still intact.

    Treatment recommended

    Everyday 5 weeks radition
    1 year interferon

    Or radition and clinical trial pembro/interferon

    However i have 98 days from surgery to get clinical trial and do radition however i have an ooen wiund on neck due to infection and need it to heal by dec 16.

    So if not healed should i skip radition go straight to clinical trial and if i dont get pembro stop trial do radition and then do 1 year interferon.

    My neck is still healing and hoping infection oa gone however i still have hard areas on neck which i am concerned about. I see oncoligist surgeon on tuesday ..

    Any advice on this would be good.

    I would rather not do radition as i know sode effects esoecially on neck can be bad.

    Thanks

    Lisa

Viewing 2 reply threads
  • Replies
      • November 27, 2016 at 8:23 pm
      debwray
      Participant

      Hi Lisa,

      The hard lumps on your neck could be a seroma / collection of lymph in the tissues following the removal of so many nodes.

      I think you are in Canada like SOLE.  Have they given you the full trial details ?

      I know I keep banging on about it .. but the only stage 3 trial I can find in Canada ( Clinicaltrials.gov ) reads investigators/ patients choice ie ipi or interferon v pembrolizumab. But it may be restricted to the choices approved in Canada.

      The infection will need to be healed before radiation commences. Does the radiation team know the constraints you are working with and can they do anything to help the time constraints ?

      If they have recommended radiation I'm sure it is because your team think the benefits out weigh the downsides.

      I would raise your concerns with the oncologist and explain you are considering skipping radiation if you can get to the PD1 drug for systemic treatment – and ask for a copy of the trial protocol.

      These are hard choices but you need to get the wound healed as a priority. By the way -do you know your BRAF status ? This would give more treatment options if you were to progress- crossing my fingers not of course.

      Have an internet hug….sending healing wishes too..

      Deb

       

       

        • November 29, 2016 at 6:14 am
        lmccann2016
        Participant
        Thanks Deb x
        • November 29, 2016 at 6:14 am
        lmccann2016
        Participant
        Thanks Deb x
        • December 2, 2016 at 6:47 pm
        Boise Steve
        Participant

        Hello Lisa,

        I am not sure, but may be one of the few on this site that is enrolled in the Polynoma (seviprotimut-L) Vaccine trial. 

        I was diagnosed in September 2014, stage 3a with only my sentinal positive for Melanoma.  At the time my options were to begin Interferon or "watch and wait".  My oncologist in Boise recommended this particular trial as it was new and entering a phase 3b stage.  Note, I understood that "vaccine's" were not in vogue and this was truly a leap of faith, but my staging of "3x" offered very little in the form of trials or new treatment.

        The trial is a 50/50 vs Placebo and my opinion was that anything was better than a Interferon strategy and I really wanted to take some form of action.  

        Fast forward to today, I have encounterred very little side effects outside of some injection swelling and my stomach lymph nodes were enlarged initially (hint that I may have actually received the active drug/vaccine as it will cause this response).

        I want to be very careful to not portray my situation as anything more than another data point as I have very little exposure to the trial outside of my location.  However, by definition a phase 3b trial suggests some historical postive data as the costs are generally prohibitive to continue down a path without some level of assurance. Additionally, I know that the trial has been granted an accelerated status with the FDA and that new participants are on hold awaiting some data compilation from the other study sites – not trying to infer anything in my last statement, but my site has witnessed some positive results.  

        I am very pleased with my decision as I am now at 2 years with clean scans.  My last injection for the study is scheduled for January 2017 and at that time my active trial will come to a close.  I will have continuing scans every 6 months and am happy to keep you updated as the process continues.

        • December 4, 2016 at 2:44 am
        lmccann2016
        Participant
        Wishing you all the best and thank u for your insight.
        • December 4, 2016 at 2:44 am
        lmccann2016
        Participant
        Wishing you all the best and thank u for your insight.
        • December 4, 2016 at 2:44 am
        lmccann2016
        Participant
        Wishing you all the best and thank u for your insight.
        • December 2, 2016 at 6:47 pm
        Boise Steve
        Participant

        Hello Lisa,

        I am not sure, but may be one of the few on this site that is enrolled in the Polynoma (seviprotimut-L) Vaccine trial. 

        I was diagnosed in September 2014, stage 3a with only my sentinal positive for Melanoma.  At the time my options were to begin Interferon or "watch and wait".  My oncologist in Boise recommended this particular trial as it was new and entering a phase 3b stage.  Note, I understood that "vaccine's" were not in vogue and this was truly a leap of faith, but my staging of "3x" offered very little in the form of trials or new treatment.

        The trial is a 50/50 vs Placebo and my opinion was that anything was better than a Interferon strategy and I really wanted to take some form of action.  

        Fast forward to today, I have encounterred very little side effects outside of some injection swelling and my stomach lymph nodes were enlarged initially (hint that I may have actually received the active drug/vaccine as it will cause this response).

        I want to be very careful to not portray my situation as anything more than another data point as I have very little exposure to the trial outside of my location.  However, by definition a phase 3b trial suggests some historical postive data as the costs are generally prohibitive to continue down a path without some level of assurance. Additionally, I know that the trial has been granted an accelerated status with the FDA and that new participants are on hold awaiting some data compilation from the other study sites – not trying to infer anything in my last statement, but my site has witnessed some positive results.  

        I am very pleased with my decision as I am now at 2 years with clean scans.  My last injection for the study is scheduled for January 2017 and at that time my active trial will come to a close.  I will have continuing scans every 6 months and am happy to keep you updated as the process continues.

        • December 2, 2016 at 6:47 pm
        Boise Steve
        Participant

        Hello Lisa,

        I am not sure, but may be one of the few on this site that is enrolled in the Polynoma (seviprotimut-L) Vaccine trial. 

        I was diagnosed in September 2014, stage 3a with only my sentinal positive for Melanoma.  At the time my options were to begin Interferon or "watch and wait".  My oncologist in Boise recommended this particular trial as it was new and entering a phase 3b stage.  Note, I understood that "vaccine's" were not in vogue and this was truly a leap of faith, but my staging of "3x" offered very little in the form of trials or new treatment.

        The trial is a 50/50 vs Placebo and my opinion was that anything was better than a Interferon strategy and I really wanted to take some form of action.  

        Fast forward to today, I have encounterred very little side effects outside of some injection swelling and my stomach lymph nodes were enlarged initially (hint that I may have actually received the active drug/vaccine as it will cause this response).

        I want to be very careful to not portray my situation as anything more than another data point as I have very little exposure to the trial outside of my location.  However, by definition a phase 3b trial suggests some historical postive data as the costs are generally prohibitive to continue down a path without some level of assurance. Additionally, I know that the trial has been granted an accelerated status with the FDA and that new participants are on hold awaiting some data compilation from the other study sites – not trying to infer anything in my last statement, but my site has witnessed some positive results.  

        I am very pleased with my decision as I am now at 2 years with clean scans.  My last injection for the study is scheduled for January 2017 and at that time my active trial will come to a close.  I will have continuing scans every 6 months and am happy to keep you updated as the process continues.

        • November 29, 2016 at 6:14 am
        lmccann2016
        Participant
        Thanks Deb x
      • November 27, 2016 at 8:23 pm
      debwray
      Participant

      Hi Lisa,

      The hard lumps on your neck could be a seroma / collection of lymph in the tissues following the removal of so many nodes.

      I think you are in Canada like SOLE.  Have they given you the full trial details ?

      I know I keep banging on about it .. but the only stage 3 trial I can find in Canada ( Clinicaltrials.gov ) reads investigators/ patients choice ie ipi or interferon v pembrolizumab. But it may be restricted to the choices approved in Canada.

      The infection will need to be healed before radiation commences. Does the radiation team know the constraints you are working with and can they do anything to help the time constraints ?

      If they have recommended radiation I'm sure it is because your team think the benefits out weigh the downsides.

      I would raise your concerns with the oncologist and explain you are considering skipping radiation if you can get to the PD1 drug for systemic treatment – and ask for a copy of the trial protocol.

      These are hard choices but you need to get the wound healed as a priority. By the way -do you know your BRAF status ? This would give more treatment options if you were to progress- crossing my fingers not of course.

      Have an internet hug….sending healing wishes too..

      Deb

       

       

      • November 27, 2016 at 8:23 pm
      debwray
      Participant

      Hi Lisa,

      The hard lumps on your neck could be a seroma / collection of lymph in the tissues following the removal of so many nodes.

      I think you are in Canada like SOLE.  Have they given you the full trial details ?

      I know I keep banging on about it .. but the only stage 3 trial I can find in Canada ( Clinicaltrials.gov ) reads investigators/ patients choice ie ipi or interferon v pembrolizumab. But it may be restricted to the choices approved in Canada.

      The infection will need to be healed before radiation commences. Does the radiation team know the constraints you are working with and can they do anything to help the time constraints ?

      If they have recommended radiation I'm sure it is because your team think the benefits out weigh the downsides.

      I would raise your concerns with the oncologist and explain you are considering skipping radiation if you can get to the PD1 drug for systemic treatment – and ask for a copy of the trial protocol.

      These are hard choices but you need to get the wound healed as a priority. By the way -do you know your BRAF status ? This would give more treatment options if you were to progress- crossing my fingers not of course.

      Have an internet hug….sending healing wishes too..

      Deb

       

       

Viewing 2 reply threads
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