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2014 and 2015

Forums Ocular Melanoma Community 2014 and 2015

  • Post
    mrf
    Keymaster

    I am on the east coast and am writing this 12 hours before the end of the year. I thought I would take a minute to reflect on 2014 and prognosticate on 2015.

    This past year saw a lot of big things happen in the melanoma space. For people with metastatic disease the biggest development was the approval of two different anti-PD1 drugs. These drugs are likely to be the standard of care for the near future and the backbone for a number of effective combinations in the years going forward.

    Also this year the US Surgeon General issued a Call to Action for Skin Cancer Prevention. This is a major step in putting the voice of the nation's doctor behind prevention efforts. The document provides a roadmap of the kinds of activities that will have the biggest impact on changing sun safety habits. 

    Just recently Congress approved a budget that provides significantly more funds for melanoma research. These funds are managed through a medical research program in the Department of Defense and melanoma is one of a handful of cancers that is eligible for funds. Two years ago the pool of available funds was $10 million. This year it was $25 million. The new budget for 2015 doubles that to $50 million. Not all of this will go to melanoma, of course, but this should mean several million dollars in additional research support.

    In November, melanoma patient advocacy groups from around the world met to discuss forming a global coalition for melanoma patient advocacy. This is a first, critical step in organizing a global voice to address issues such as increased awareness, access to clinical trials, and access to new and emerging therapies.

    Of course the real story of 2014 is told in the people who have been affected most personally by melanoma. I cannot reflect on the past twelve months without remembering the people who I have met, who have called me, and whose stories I have heard here on this board. I remain deeply impressed by the quality of information that is shared here and the caring tone in which that information is delivered.

    The people on MPIP are an amazing family of individuals who routinely impact the lives of others in positive ways. Just last week someone posted about being told by a nurse practitioner that she had Stage IV melanoma. The news came on Christmas Eve and was devastating. Fortunately this person questioned the news and many people on this board wrote to confirm what she suspected–she was Clark's Level IV, not Stage IV. That patient's family time over the holiday was transformed by the quick, informed, and caring response of others on MPIP. And that is a story told over and over again during 2014.

    What can we look forward to in 2015? I wish I had better answers, but I think it is unclear.  Here are some thoughts:

    –I suspect that studies will show that PD1 drugs can and should be used as first-line therapy, rather than being given only after ipi and BRAF inhibitors.  

    –I suspect data will mature showing that ipi and anti-PD1 is a very powerful and important combination.

    –Some of the intralesional therapies will mature and may even be up for approval. This includes oncolytic viruses being developed by Amgen and Viralytics, as well as other agents such as PV10 being developed by Provectus. These will likely be used in combination with other immunotherapy approaches.

    –I hope that some adjuvant data will begin to mature and we might be offered better options for people who are NED but at high risk of recurrence.

    –We will see new progress in ocular melanoma, and greater attention to mucosal melanoma. We will also see more attention being paid to children with melanoma and will have new insights into this phenomena.

    One thing I can state with no hesitation, however:  The MPIP community will continue to support people with melanoma, and by doing so will give everyone who reads these pages the information and care they need to live as long and as well as possible.

    Thank you for this, and may we all have a healthy and hopeful 2015.

    Tim–MRF

     

     

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  • Replies
      BrianP
      Participant

      Thanks for all you and the staff at MRF do!  I'm optimistic that 2015 will be every bit as successful as 2014.

      Happy New Year,

      Brian

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      BrianP
      Participant

      Thanks for all you and the staff at MRF do!  I'm optimistic that 2015 will be every bit as successful as 2014.

      Happy New Year,

      Brian

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      BrianP
      Participant

      Thanks for all you and the staff at MRF do!  I'm optimistic that 2015 will be every bit as successful as 2014.

      Happy New Year,

      Brian

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      _Paul_
      Participant

      Thanks for the well written and encouraging post Tim!

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      _Paul_
      Participant

      Thanks for the well written and encouraging post Tim!

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      _Paul_
      Participant

      Thanks for the well written and encouraging post Tim!

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      DZnDef
      Participant

      I am very thankful for this board, Tim.  There is no place better for us melanoma patients that I have found.

      I hope you are correct about Anti-PD1 being offered as a first-line defense in 2015.  It is my oncologist's preferred first choice for me.  He would like to start me on an Anti-PD1 (fewer side-effects and higher success rate) and if it doesn't work, move on to Yervoy (slightly more side-effects and lower success rate), and if that doesn't work and by then my tumors are large, move on to BRAFi followed immediately by surgical resection.    And if I have a recurrence after that, move on to a trial or maybe something new and effective will be available by then.  This seems like a perfectly logical sequence to me and I truly resent that he is not free to follow it based on the currently approved protocols.  Shouldn't the doctors be permitted to decide what is best for their patients?

      I am so thankful for all that you and the MRF community do for us.  Thank you so much for providing this forum.

      Cheers!

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      DZnDef
      Participant

      I am very thankful for this board, Tim.  There is no place better for us melanoma patients that I have found.

      I hope you are correct about Anti-PD1 being offered as a first-line defense in 2015.  It is my oncologist's preferred first choice for me.  He would like to start me on an Anti-PD1 (fewer side-effects and higher success rate) and if it doesn't work, move on to Yervoy (slightly more side-effects and lower success rate), and if that doesn't work and by then my tumors are large, move on to BRAFi followed immediately by surgical resection.    And if I have a recurrence after that, move on to a trial or maybe something new and effective will be available by then.  This seems like a perfectly logical sequence to me and I truly resent that he is not free to follow it based on the currently approved protocols.  Shouldn't the doctors be permitted to decide what is best for their patients?

      I am so thankful for all that you and the MRF community do for us.  Thank you so much for providing this forum.

      Cheers!

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      DZnDef
      Participant

      I am very thankful for this board, Tim.  There is no place better for us melanoma patients that I have found.

      I hope you are correct about Anti-PD1 being offered as a first-line defense in 2015.  It is my oncologist's preferred first choice for me.  He would like to start me on an Anti-PD1 (fewer side-effects and higher success rate) and if it doesn't work, move on to Yervoy (slightly more side-effects and lower success rate), and if that doesn't work and by then my tumors are large, move on to BRAFi followed immediately by surgical resection.    And if I have a recurrence after that, move on to a trial or maybe something new and effective will be available by then.  This seems like a perfectly logical sequence to me and I truly resent that he is not free to follow it based on the currently approved protocols.  Shouldn't the doctors be permitted to decide what is best for their patients?

      I am so thankful for all that you and the MRF community do for us.  Thank you so much for providing this forum.

      Cheers!

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      sweetaugust
      Participant

      Yes, Thank you so much for all your help in putting us in touch with each other.  I didn't find this site until a year and a half after my stage 4 diagnosis.  I just happened to ask google a question about MK-3475 one day and I found a post that brought me to this site.  I wish my doctors had recommended it to me at the beginning for support.   Happy New Year and Thank You!  Laurie

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      sweetaugust
      Participant

      Yes, Thank you so much for all your help in putting us in touch with each other.  I didn't find this site until a year and a half after my stage 4 diagnosis.  I just happened to ask google a question about MK-3475 one day and I found a post that brought me to this site.  I wish my doctors had recommended it to me at the beginning for support.   Happy New Year and Thank You!  Laurie

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      sweetaugust
      Participant

      Yes, Thank you so much for all your help in putting us in touch with each other.  I didn't find this site until a year and a half after my stage 4 diagnosis.  I just happened to ask google a question about MK-3475 one day and I found a post that brought me to this site.  I wish my doctors had recommended it to me at the beginning for support.   Happy New Year and Thank You!  Laurie

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