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Mom of 3 surviving stage IV

Forums General Melanoma Community Mom of 3 surviving stage IV

  • Post
    love4life
    Participant

    Hello All,

    Hello All,

    I've been browsing the message boards here for around a year and have finally gotten up the courage to say hi.  I have been diagnosed with Stage IV MM with metastasis to the brain and lung.  I am currently NED and am finishing up my year of Interferon in the next 6 weeks.  I am curious if anyone out there has had brain mets and what type of treatment you were offered?  I am very hopeful that the Interferon works and that I will remain NED for many years to come but am wondering what other treatments are available for someone like me.  I am a young mom and am willing to try anything to keep this monster from popping up again. 

     

    Thanks!

    Natalie

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  • Replies
      Janner
      Participant

      Hi Natalie,

      Sorry you have to join us here, but this is a good place for questions.  I have one for you, though.  Are you in the US?  They don't typically use Interferon for stage IV around here.  Most people with brain mets are offered 3 types of treatment:  WBR (whole brain radiation), SRS/GammaKnife – some type of targeted radiation used for individual tumors, or Temodar (chemo that crosses the blood brain barrier).  I'm sure you'll hear from others.  What treatments did you undergo to become NED?

      Best wishes,

      Janner

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      Janner
      Participant

      Hi Natalie,

      Sorry you have to join us here, but this is a good place for questions.  I have one for you, though.  Are you in the US?  They don't typically use Interferon for stage IV around here.  Most people with brain mets are offered 3 types of treatment:  WBR (whole brain radiation), SRS/GammaKnife – some type of targeted radiation used for individual tumors, or Temodar (chemo that crosses the blood brain barrier).  I'm sure you'll hear from others.  What treatments did you undergo to become NED?

      Best wishes,

      Janner

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        love4life
        Participant

        Hi Janner,

        I am in Canada and have had a craniotomy, gamma knife surgery and then was offered Interferon.  I have wondered about Temodar but was told it was only for those with active disease.  I have also had a wedge resection for a spot on my lung which was also melanoma and that is how I end up back to NED.  The Interferon (fingers crossed) has seemed to have helped as I've been clear of disease for 10 months. 

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        love4life
        Participant

        Hi Janner,

        I am in Canada and have had a craniotomy, gamma knife surgery and then was offered Interferon.  I have wondered about Temodar but was told it was only for those with active disease.  I have also had a wedge resection for a spot on my lung which was also melanoma and that is how I end up back to NED.  The Interferon (fingers crossed) has seemed to have helped as I've been clear of disease for 10 months. 

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        dian in spokane
        Participant

        I see we were writing at the same time. Thanks for the additional info. And.. again..extraordinary!

        dian

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        dian in spokane
        Participant

        I see we were writing at the same time. Thanks for the additional info. And.. again..extraordinary!

        dian

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        LynnLuc
        Participant

        I did /doing this clinical trial at Moffitt  using the Anti-PD-1 (MDX 1106) and 6 peptides…I finished  two12 week cycles  and now doing the booster IV's every 3 months of the MDX 1106 for the next 2 years if I remain NED. It was the only promising trial I could find while being NED…

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        LynnLuc
        Participant

        I did /doing this clinical trial at Moffitt  using the Anti-PD-1 (MDX 1106) and 6 peptides…I finished  two12 week cycles  and now doing the booster IV's every 3 months of the MDX 1106 for the next 2 years if I remain NED. It was the only promising trial I could find while being NED…

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      dian in spokane
      Participant

      HI Natalie and welcome to the board!

      Like Janner, I'm curious about your treatment. As she mentioned, interferon is rarely used this way for stage IV treatment. And…if you are finishing up your year, does that mean that you had brain mets and lung mets surgically removed a year ago?Was there some other treatment other than surgery?

      In any case, you've shown some extraordinary good luck by being NED this long after such serious metastes, and I congratulate you on doing so well. I hope you continue on this long NED run.

      Will you be having scans when you end your interferon treatment?

      dian  

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      dian in spokane
      Participant

      HI Natalie and welcome to the board!

      Like Janner, I'm curious about your treatment. As she mentioned, interferon is rarely used this way for stage IV treatment. And…if you are finishing up your year, does that mean that you had brain mets and lung mets surgically removed a year ago?Was there some other treatment other than surgery?

      In any case, you've shown some extraordinary good luck by being NED this long after such serious metastes, and I congratulate you on doing so well. I hope you continue on this long NED run.

      Will you be having scans when you end your interferon treatment?

      dian  

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        love4life
        Participant

        Hi there,

        Here's the timeline for how my treatment has gone up until  now…

        May/June 2001 – melanoma removed and wide excision done of skin on my left temple

        December 15, 2009 – fist sized tumour removed by craniotomy – was shocked to find out that it was melanoma after 9 years

        January 28, 2010 – Gamma Knife

        February 2010 – started Interferon

        June 1, 2010 – lung resection for a 7 mm melanoma mets

        July 2010 – started back on the Interferon.  Was able to pick up treatment where I left off because the lung lesion had been there on my initial scans in January 2010 and they had been watching it; therefore not a new spot

        Presently, no new mets and clear of disease according to my recent scans (brain MRI and CT's).  I will be going for a whole whack of scans when I am finished the Interferon and will be monitored by my Dr. every 3 months.

        I feel well other than the Interferon hangover and will be so relieved to have this done next month. 

        Thanks for your response!

        Natalie

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        love4life
        Participant

        Hi there,

        Here's the timeline for how my treatment has gone up until  now…

        May/June 2001 – melanoma removed and wide excision done of skin on my left temple

        December 15, 2009 – fist sized tumour removed by craniotomy – was shocked to find out that it was melanoma after 9 years

        January 28, 2010 – Gamma Knife

        February 2010 – started Interferon

        June 1, 2010 – lung resection for a 7 mm melanoma mets

        July 2010 – started back on the Interferon.  Was able to pick up treatment where I left off because the lung lesion had been there on my initial scans in January 2010 and they had been watching it; therefore not a new spot

        Presently, no new mets and clear of disease according to my recent scans (brain MRI and CT's).  I will be going for a whole whack of scans when I am finished the Interferon and will be monitored by my Dr. every 3 months.

        I feel well other than the Interferon hangover and will be so relieved to have this done next month. 

        Thanks for your response!

        Natalie

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      premedy
      Participant

      Wow Natalie that is an amazing story. I was a little confused at first because I thought from your post that you had become NED through interferron.  But after I read your profile its clear that surgery is what got you to your current NED status.  That is truly amazing that you had a fist sized tumor in your brain and you are walking around NED.  I am pretty new to this whole thing so I don't have any advice for you but just wanted to let you know how inspirational your story is.

      pat

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      premedy
      Participant

      Wow Natalie that is an amazing story. I was a little confused at first because I thought from your post that you had become NED through interferron.  But after I read your profile its clear that surgery is what got you to your current NED status.  That is truly amazing that you had a fist sized tumor in your brain and you are walking around NED.  I am pretty new to this whole thing so I don't have any advice for you but just wanted to let you know how inspirational your story is.

      pat

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      MichaelFL
      Participant

      Wow! Glad everything has worked well for you. This board needs more stories like yours.

      Keep it up!

      Michael

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      MichaelFL
      Participant

      Wow! Glad everything has worked well for you. This board needs more stories like yours.

      Keep it up!

      Michael

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      Rydell
      Participant

      Hi Natalie,

      Glad to hear you are NED. Thank you for reaching out.

      I was diagnosed with Stage IV MM in January 2011, after a double craniotomy. I received 4 CyberKnife treatments for a third brain met. I have about six other lesions throughout my body. I just completed six weeks of Temodar and will have a PET scan this week. I also tested positive for the B-RAF mutation. Not sure what the next step will be, it all seems very overwhelming.

      Please keep us updated on your status. You've given me some more hope :)

      Thanks,

      Amanda

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        love4life
        Participant

        Hi Amanda,

        Good luck with your PET scan this week.  How are you finding the Temodar?  Are there alot of side effects?  We use Gamma Knife here in Canada (not sure really what the difference is) compared to CyberKnife.  I havn't been tested for the B-RAF mutation but will be asking about it next time I go in.

        You are right about it being overwhelming.

        Natalie

         

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        love4life
        Participant

        Hi Amanda,

        Good luck with your PET scan this week.  How are you finding the Temodar?  Are there alot of side effects?  We use Gamma Knife here in Canada (not sure really what the difference is) compared to CyberKnife.  I havn't been tested for the B-RAF mutation but will be asking about it next time I go in.

        You are right about it being overwhelming.

        Natalie

         

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        Rydell
        Participant

        Hi Natalie,

        I will get my results on Wednesday. I took 150mg everyday for six weeks. Fatigue, nausea, and hair loss were the main side effects. First three weeks weren't bad, then the side effects started…some days were worse than others, I just slept a lot. CyberKnife doesn't use the metal halo. You should definitely be tested for the B-RAF mutation.

        Email me anytime you want to talk, [email protected]. But definitely keep us updated on your status. Good luck with everything!!
         

        Amanda

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        Rydell
        Participant

        Hi Natalie,

        I will get my results on Wednesday. I took 150mg everyday for six weeks. Fatigue, nausea, and hair loss were the main side effects. First three weeks weren't bad, then the side effects started…some days were worse than others, I just slept a lot. CyberKnife doesn't use the metal halo. You should definitely be tested for the B-RAF mutation.

        Email me anytime you want to talk, [email protected]. But definitely keep us updated on your status. Good luck with everything!!
         

        Amanda

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      Rydell
      Participant

      Hi Natalie,

      Glad to hear you are NED. Thank you for reaching out.

      I was diagnosed with Stage IV MM in January 2011, after a double craniotomy. I received 4 CyberKnife treatments for a third brain met. I have about six other lesions throughout my body. I just completed six weeks of Temodar and will have a PET scan this week. I also tested positive for the B-RAF mutation. Not sure what the next step will be, it all seems very overwhelming.

      Please keep us updated on your status. You've given me some more hope :)

      Thanks,

      Amanda

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      FormerCaregiver
      Participant

      Thanks for telling us about your struggle with this monster of a disease.

      Here is an updated list of the newer systemic treatments that are becoming
      available:
      Yervoy (ipilimumab)
      BRAF and MEK inhibitors
      GM-CSF (Leukine)
      OncoVex
      Adoptive cell therapy

      It seems that one could need a combination of treatments from the above
      list, combined with surgery and/or radiotherapy to keep things under
      control.

      As I might have mentioned a little while ago, there are some wonderful
      people in this forum who are more than happy to tell you about their
      experiences with the above.

      Hope this helps.

      Frank

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      FormerCaregiver
      Participant

      Thanks for telling us about your struggle with this monster of a disease.

      Here is an updated list of the newer systemic treatments that are becoming
      available:
      Yervoy (ipilimumab)
      BRAF and MEK inhibitors
      GM-CSF (Leukine)
      OncoVex
      Adoptive cell therapy

      It seems that one could need a combination of treatments from the above
      list, combined with surgery and/or radiotherapy to keep things under
      control.

      As I might have mentioned a little while ago, there are some wonderful
      people in this forum who are more than happy to tell you about their
      experiences with the above.

      Hope this helps.

      Frank

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