New Diagnosis – Stage IV Melanoma
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New Diagnosis – Stage IV Melanoma

› Forums › General Melanoma Community › New Diagnosis – Stage IV Melanoma

  • Post
    • March 17, 2014 at 4:28 pm
    Ashley
    Participant

    My dad was just diagnosed with stage IV melanoma last week.  He collapsed at the grocery store and the ER did a brain scan and found 2 mets there.  He had stage 0 melanoma removed on his face in 2010, however they said they cleared the margins.  How does this happen?

    Since being in the hospital they have found other spots on his lungs and liver as well.  He's having surgery tomorrow to remove the 4cm met in his brain and then radiation on the removed spot as well as the other spot starting next week.  He'll also be starting on Yervoy next week.  Does anyone have good experience with Yervoy with stage 4?

    4 weeks post surgery I want him to go onto the expanded access trial for MK-3475.  Anyone with positive experience on that?

    I'd appreciate any feedback or support.

    Thanks,

    Ashley

Viewing 14 reply threads
  • Replies
      • March 17, 2014 at 5:41 pm
      Germer
      Participant

      Is it possible that he has another primary somewhere? Has he been checked by a dermatologist? 

      • March 17, 2014 at 5:41 pm
      Germer
      Participant

      Is it possible that he has another primary somewhere? Has he been checked by a dermatologist? 

      • March 17, 2014 at 5:41 pm
      Germer
      Participant

      Is it possible that he has another primary somewhere? Has he been checked by a dermatologist? 

        • March 17, 2014 at 6:26 pm
        Ashley
        Participant

        No, that's the only one we know of.  Multiple dermatologists have checked him.

        • March 17, 2014 at 6:26 pm
        Ashley
        Participant

        No, that's the only one we know of.  Multiple dermatologists have checked him.

        • March 17, 2014 at 6:26 pm
        Ashley
        Participant

        No, that's the only one we know of.  Multiple dermatologists have checked him.

      • March 17, 2014 at 9:59 pm
      shanemcdonald99
      Participant

      I had a mole removed a little over a year ago and they said margins were clear with clean sentinel node biopsy.

      1 year later I was diagnosed with stage 4 metastatic melanoma which spread to my bones, thyroid and somewhere near pancreas. It was found in an MRI for a pulled muscle in my back.

      I guess melanoma can be unruly and aggressive.  I have not had any experience with yervoy, but I have read several people's stories on here that have had success with it.

      I did have some success with the targeted radiation, they used it on my bones.

      They seem to be getting a handle on melanoma at this point in time with many new treatments and new trials coming down the road. 

      I have heard many good things about yervoy, I am glad to hear he will be starting that.

       

      best regards

      Shane

      • March 17, 2014 at 9:59 pm
      shanemcdonald99
      Participant

      I had a mole removed a little over a year ago and they said margins were clear with clean sentinel node biopsy.

      1 year later I was diagnosed with stage 4 metastatic melanoma which spread to my bones, thyroid and somewhere near pancreas. It was found in an MRI for a pulled muscle in my back.

      I guess melanoma can be unruly and aggressive.  I have not had any experience with yervoy, but I have read several people's stories on here that have had success with it.

      I did have some success with the targeted radiation, they used it on my bones.

      They seem to be getting a handle on melanoma at this point in time with many new treatments and new trials coming down the road. 

      I have heard many good things about yervoy, I am glad to hear he will be starting that.

       

      best regards

      Shane

      • March 17, 2014 at 9:59 pm
      shanemcdonald99
      Participant

      I had a mole removed a little over a year ago and they said margins were clear with clean sentinel node biopsy.

      1 year later I was diagnosed with stage 4 metastatic melanoma which spread to my bones, thyroid and somewhere near pancreas. It was found in an MRI for a pulled muscle in my back.

      I guess melanoma can be unruly and aggressive.  I have not had any experience with yervoy, but I have read several people's stories on here that have had success with it.

      I did have some success with the targeted radiation, they used it on my bones.

      They seem to be getting a handle on melanoma at this point in time with many new treatments and new trials coming down the road. 

      I have heard many good things about yervoy, I am glad to hear he will be starting that.

       

      best regards

      Shane

      • March 17, 2014 at 10:50 pm
      Bubbles
      Participant

      There are many success stories with Yervoy. Data  with yervoy demonstrates a response rate of 15-20%. The expanded use program for Merk's anti-PD 1 product is just getting started and will not be actually available for use by anyone for several weeks. Additionally, the program has specific requirements that must be met.  In your case I suspect this would include proving that the brain mets have been treated and have stabilized post the treatment you are planning. Additionally, you must try…and fail yervoy as well as a BRAF inhibitor (if you are BRAF positive) before you can gain access. Which brings up another point.  Your father will need to have the brain tumor tested to determine his BRAF status. I know this is a lot to take in all at once. The complete description of the expanded access and other articles and information related to the treatments mentioned are on my blog if you are interested. I wish you my best.  Celeste

      • March 17, 2014 at 10:50 pm
      Bubbles
      Participant

      There are many success stories with Yervoy. Data  with yervoy demonstrates a response rate of 15-20%. The expanded use program for Merk's anti-PD 1 product is just getting started and will not be actually available for use by anyone for several weeks. Additionally, the program has specific requirements that must be met.  In your case I suspect this would include proving that the brain mets have been treated and have stabilized post the treatment you are planning. Additionally, you must try…and fail yervoy as well as a BRAF inhibitor (if you are BRAF positive) before you can gain access. Which brings up another point.  Your father will need to have the brain tumor tested to determine his BRAF status. I know this is a lot to take in all at once. The complete description of the expanded access and other articles and information related to the treatments mentioned are on my blog if you are interested. I wish you my best.  Celeste

      • March 17, 2014 at 10:50 pm
      Bubbles
      Participant

      There are many success stories with Yervoy. Data  with yervoy demonstrates a response rate of 15-20%. The expanded use program for Merk's anti-PD 1 product is just getting started and will not be actually available for use by anyone for several weeks. Additionally, the program has specific requirements that must be met.  In your case I suspect this would include proving that the brain mets have been treated and have stabilized post the treatment you are planning. Additionally, you must try…and fail yervoy as well as a BRAF inhibitor (if you are BRAF positive) before you can gain access. Which brings up another point.  Your father will need to have the brain tumor tested to determine his BRAF status. I know this is a lot to take in all at once. The complete description of the expanded access and other articles and information related to the treatments mentioned are on my blog if you are interested. I wish you my best.  Celeste

      • March 17, 2014 at 11:20 pm
      buffcody
      Participant

      Ashley,

       

      I'm sorry to read about your father.  Stage IV melanoma is not a disease one wants oneself or loved one to have.  I got the diagnois almost 2 years ago when it was disovered in my lung, primary still unknown.  I received a course of ipi a few months after diagnosis in 2012.  I also had two brain tumors, which were radiated during the course of the ipi.  Since then, the only recurrence of melanoma was a small subcutaneous tumor in early 2013.  I saw my primary physician today and we discussed how fortunate I have been.  My oncologist considers me an ipi success story.  He is probably right.

      • March 17, 2014 at 11:20 pm
      buffcody
      Participant

      Ashley,

       

      I'm sorry to read about your father.  Stage IV melanoma is not a disease one wants oneself or loved one to have.  I got the diagnois almost 2 years ago when it was disovered in my lung, primary still unknown.  I received a course of ipi a few months after diagnosis in 2012.  I also had two brain tumors, which were radiated during the course of the ipi.  Since then, the only recurrence of melanoma was a small subcutaneous tumor in early 2013.  I saw my primary physician today and we discussed how fortunate I have been.  My oncologist considers me an ipi success story.  He is probably right.

      • March 17, 2014 at 11:20 pm
      buffcody
      Participant

      Ashley,

       

      I'm sorry to read about your father.  Stage IV melanoma is not a disease one wants oneself or loved one to have.  I got the diagnois almost 2 years ago when it was disovered in my lung, primary still unknown.  I received a course of ipi a few months after diagnosis in 2012.  I also had two brain tumors, which were radiated during the course of the ipi.  Since then, the only recurrence of melanoma was a small subcutaneous tumor in early 2013.  I saw my primary physician today and we discussed how fortunate I have been.  My oncologist considers me an ipi success story.  He is probably right.

      • March 18, 2014 at 4:14 pm
      Gene_S
      Participant

      Hi Ashley,

      My husband had success with Ipi in a clinical trial with GMCSF.  He started in Mar. 2011 with the 10mg/kg and daily injections of GMCSF for 14 days and off for 7 days.  He was stage IV with unresectable lesion on his head at the Cervical spine at C1-C2 area and also had numerous lung and liver mets.

      He became NED (no evidence of disease) in Oct. of 2012 and in Nov. 2013 went off of the clinical trial.  You can read more about him in his profile.

      Good luck to your Dad on the journey and this is a great place to come for support, ideas and help.

      Judy (loving wife of Gene Stage IV and now NED)

      • March 18, 2014 at 4:14 pm
      Gene_S
      Participant

      Hi Ashley,

      My husband had success with Ipi in a clinical trial with GMCSF.  He started in Mar. 2011 with the 10mg/kg and daily injections of GMCSF for 14 days and off for 7 days.  He was stage IV with unresectable lesion on his head at the Cervical spine at C1-C2 area and also had numerous lung and liver mets.

      He became NED (no evidence of disease) in Oct. of 2012 and in Nov. 2013 went off of the clinical trial.  You can read more about him in his profile.

      Good luck to your Dad on the journey and this is a great place to come for support, ideas and help.

      Judy (loving wife of Gene Stage IV and now NED)

      • March 18, 2014 at 4:14 pm
      Gene_S
      Participant

      Hi Ashley,

      My husband had success with Ipi in a clinical trial with GMCSF.  He started in Mar. 2011 with the 10mg/kg and daily injections of GMCSF for 14 days and off for 7 days.  He was stage IV with unresectable lesion on his head at the Cervical spine at C1-C2 area and also had numerous lung and liver mets.

      He became NED (no evidence of disease) in Oct. of 2012 and in Nov. 2013 went off of the clinical trial.  You can read more about him in his profile.

      Good luck to your Dad on the journey and this is a great place to come for support, ideas and help.

      Judy (loving wife of Gene Stage IV and now NED)

        • March 21, 2014 at 5:26 pm
        Ashley
        Participant

        Thank you all for your kind words, I'm still new to this site, so I just realized now that people responded.  My dad had surgery on the brain MET (size of a tennis ball!) on tuesday and it went very well, he's already home recovering.  He'll start IPI 3mg/kg on Monday (10 mg/kg isn't approved in the US), and we're hoping that it works for him.  MK-3475 expanded access trial can be started 4 weeks post surgery assuming IPI fails, but I think we'll have to see how IPI goes first for a little longer than 4 weeks.  I'm just so happy to see that there are survivors out there, I really need these stories to give my dad hope 🙂  We unfortunately found out that he's BRAF negative which I've heard limits our options.  I'm just hoping that IPI or MK-3475 work.

        • March 21, 2014 at 5:26 pm
        Ashley
        Participant

        Thank you all for your kind words, I'm still new to this site, so I just realized now that people responded.  My dad had surgery on the brain MET (size of a tennis ball!) on tuesday and it went very well, he's already home recovering.  He'll start IPI 3mg/kg on Monday (10 mg/kg isn't approved in the US), and we're hoping that it works for him.  MK-3475 expanded access trial can be started 4 weeks post surgery assuming IPI fails, but I think we'll have to see how IPI goes first for a little longer than 4 weeks.  I'm just so happy to see that there are survivors out there, I really need these stories to give my dad hope 🙂  We unfortunately found out that he's BRAF negative which I've heard limits our options.  I'm just hoping that IPI or MK-3475 work.

        • March 21, 2014 at 5:26 pm
        Ashley
        Participant

        Thank you all for your kind words, I'm still new to this site, so I just realized now that people responded.  My dad had surgery on the brain MET (size of a tennis ball!) on tuesday and it went very well, he's already home recovering.  He'll start IPI 3mg/kg on Monday (10 mg/kg isn't approved in the US), and we're hoping that it works for him.  MK-3475 expanded access trial can be started 4 weeks post surgery assuming IPI fails, but I think we'll have to see how IPI goes first for a little longer than 4 weeks.  I'm just so happy to see that there are survivors out there, I really need these stories to give my dad hope 🙂  We unfortunately found out that he's BRAF negative which I've heard limits our options.  I'm just hoping that IPI or MK-3475 work.

        • March 21, 2014 at 7:33 pm
        sweetaugust
        Participant

        Hi there,

        My melanoma metastesized to a lymph node in my right arm pit in Sept 2012 at 39 yrs old.  The scan revealed that met, as well as several other nodes in my other arm pit, behind my chest wall, wrapped around my heart, and a mass on my liver.

        I started MK-3475 (highest dose – every 3 weeks) Oct 31, 2012…and it is now March 21, 2014 and i am doing great.  I am at Dana Farber in Boston.

        At the 3 month mark, all other large nodes shrank to normal and the mass on liver disappeared.  But the met node was aggressive and doubled in size.  At the 6 month mark, my met node blew up and died and now it has been shrinking by about 15% every 5 weeks that I scan.  My most recent scan was two days ago and my met node is now smaller than it was at the beginning of the trial, and nothing else showed up on my scan, so all is fantastic.

        Side effects for me:  Living a basically normal life.  Still working fulltime and feeling good.  Have nausea usually the first week after treatment and then some in the second and third week, but I have still never thrown up.  Have the itchy rash on my chest, neck, and back of head, but it goes away in the summer months.  I get a little fatigue, but really that is probably just from working and my social life.  I just started getting joint pain this week in my hip and shoulder. 

        Otherwise all is great.  I don't take any prescription medications and I try to eat mostly raw organic fruits and veggies to help my body stay healthy. No meat or dairy or refined sugars.   I originally signed up for treatment for 2 years, but back in November they changed it to no end date.

        Best of luck with everything

        Laurie

         

        • March 21, 2014 at 8:05 pm
        Ashley
        Participant

        Hi Laurie,

        Thanks for the response.  We're actually going to MGH but wondered if we should be going to Dana Farber.  How has your experience been with them?  I agree with your diet, I'm trying to get my dad into that mindset as well, we need to do everything we can to help his body fight this.  I'm so happy that you are doing well with MK-3475, I'm very hopeful 🙂 

        Thanks again!

        Ashley

        • March 21, 2014 at 8:52 pm
        sweetaugust
        Participant

        Stay positive and hopeful Ashley.  There has been such great advancements in treatments for metastatic melanoma.   

        MGH and Dana Farber are basically the same family.  All the doctors talk to each other.  If you like his doctor at MGH, then you are in good hands.  I have been with Dana Farber since 2000 (when I got my primary melanoma) and have always been happy with Dr. Steve Hodi.  He is fantastic!

        I am totally happy at Dana Farber and would not want to go anywhere else.

        Best of luck Ashley!  This site is quite helpful.  So many stories of people living a long long time which is so great to hear.  🙂

        Laurie

        • March 21, 2014 at 8:52 pm
        sweetaugust
        Participant

        Stay positive and hopeful Ashley.  There has been such great advancements in treatments for metastatic melanoma.   

        MGH and Dana Farber are basically the same family.  All the doctors talk to each other.  If you like his doctor at MGH, then you are in good hands.  I have been with Dana Farber since 2000 (when I got my primary melanoma) and have always been happy with Dr. Steve Hodi.  He is fantastic!

        I am totally happy at Dana Farber and would not want to go anywhere else.

        Best of luck Ashley!  This site is quite helpful.  So many stories of people living a long long time which is so great to hear.  🙂

        Laurie

        • March 21, 2014 at 8:52 pm
        sweetaugust
        Participant

        Stay positive and hopeful Ashley.  There has been such great advancements in treatments for metastatic melanoma.   

        MGH and Dana Farber are basically the same family.  All the doctors talk to each other.  If you like his doctor at MGH, then you are in good hands.  I have been with Dana Farber since 2000 (when I got my primary melanoma) and have always been happy with Dr. Steve Hodi.  He is fantastic!

        I am totally happy at Dana Farber and would not want to go anywhere else.

        Best of luck Ashley!  This site is quite helpful.  So many stories of people living a long long time which is so great to hear.  🙂

        Laurie

        • March 21, 2014 at 8:05 pm
        Ashley
        Participant

        Hi Laurie,

        Thanks for the response.  We're actually going to MGH but wondered if we should be going to Dana Farber.  How has your experience been with them?  I agree with your diet, I'm trying to get my dad into that mindset as well, we need to do everything we can to help his body fight this.  I'm so happy that you are doing well with MK-3475, I'm very hopeful 🙂 

        Thanks again!

        Ashley

        • March 21, 2014 at 8:05 pm
        Ashley
        Participant

        Hi Laurie,

        Thanks for the response.  We're actually going to MGH but wondered if we should be going to Dana Farber.  How has your experience been with them?  I agree with your diet, I'm trying to get my dad into that mindset as well, we need to do everything we can to help his body fight this.  I'm so happy that you are doing well with MK-3475, I'm very hopeful 🙂 

        Thanks again!

        Ashley

        • March 21, 2014 at 7:33 pm
        sweetaugust
        Participant

        Hi there,

        My melanoma metastesized to a lymph node in my right arm pit in Sept 2012 at 39 yrs old.  The scan revealed that met, as well as several other nodes in my other arm pit, behind my chest wall, wrapped around my heart, and a mass on my liver.

        I started MK-3475 (highest dose – every 3 weeks) Oct 31, 2012…and it is now March 21, 2014 and i am doing great.  I am at Dana Farber in Boston.

        At the 3 month mark, all other large nodes shrank to normal and the mass on liver disappeared.  But the met node was aggressive and doubled in size.  At the 6 month mark, my met node blew up and died and now it has been shrinking by about 15% every 5 weeks that I scan.  My most recent scan was two days ago and my met node is now smaller than it was at the beginning of the trial, and nothing else showed up on my scan, so all is fantastic.

        Side effects for me:  Living a basically normal life.  Still working fulltime and feeling good.  Have nausea usually the first week after treatment and then some in the second and third week, but I have still never thrown up.  Have the itchy rash on my chest, neck, and back of head, but it goes away in the summer months.  I get a little fatigue, but really that is probably just from working and my social life.  I just started getting joint pain this week in my hip and shoulder. 

        Otherwise all is great.  I don't take any prescription medications and I try to eat mostly raw organic fruits and veggies to help my body stay healthy. No meat or dairy or refined sugars.   I originally signed up for treatment for 2 years, but back in November they changed it to no end date.

        Best of luck with everything

        Laurie

         

        • March 21, 2014 at 7:33 pm
        sweetaugust
        Participant

        Hi there,

        My melanoma metastesized to a lymph node in my right arm pit in Sept 2012 at 39 yrs old.  The scan revealed that met, as well as several other nodes in my other arm pit, behind my chest wall, wrapped around my heart, and a mass on my liver.

        I started MK-3475 (highest dose – every 3 weeks) Oct 31, 2012…and it is now March 21, 2014 and i am doing great.  I am at Dana Farber in Boston.

        At the 3 month mark, all other large nodes shrank to normal and the mass on liver disappeared.  But the met node was aggressive and doubled in size.  At the 6 month mark, my met node blew up and died and now it has been shrinking by about 15% every 5 weeks that I scan.  My most recent scan was two days ago and my met node is now smaller than it was at the beginning of the trial, and nothing else showed up on my scan, so all is fantastic.

        Side effects for me:  Living a basically normal life.  Still working fulltime and feeling good.  Have nausea usually the first week after treatment and then some in the second and third week, but I have still never thrown up.  Have the itchy rash on my chest, neck, and back of head, but it goes away in the summer months.  I get a little fatigue, but really that is probably just from working and my social life.  I just started getting joint pain this week in my hip and shoulder. 

        Otherwise all is great.  I don't take any prescription medications and I try to eat mostly raw organic fruits and veggies to help my body stay healthy. No meat or dairy or refined sugars.   I originally signed up for treatment for 2 years, but back in November they changed it to no end date.

        Best of luck with everything

        Laurie

         

        • March 22, 2014 at 6:25 pm
        Bubbles
        Participant

        Hey Ashley,

        I'm glad that things are going well so far.  It sounds like you have a really good plan in place.  Yes, ipi can be a little slow to work so giving it time is often needed as many of the experts and their published papers now attest to.  The MK-3475 sounds like a good back-up and perhaps (fingers crossed!!!) it and other anti-PD1 products will just be on the market, no strings attached, by the time your dad needs them…OR…even better!!!…he won't need them at all.  Bottom line, he has a great advocate in you!  Sometimes that makes all the difference.  I wish you both my best!  Celeste

        • March 22, 2014 at 6:25 pm
        Bubbles
        Participant

        Hey Ashley,

        I'm glad that things are going well so far.  It sounds like you have a really good plan in place.  Yes, ipi can be a little slow to work so giving it time is often needed as many of the experts and their published papers now attest to.  The MK-3475 sounds like a good back-up and perhaps (fingers crossed!!!) it and other anti-PD1 products will just be on the market, no strings attached, by the time your dad needs them…OR…even better!!!…he won't need them at all.  Bottom line, he has a great advocate in you!  Sometimes that makes all the difference.  I wish you both my best!  Celeste

        • March 22, 2014 at 6:25 pm
        Bubbles
        Participant

        Hey Ashley,

        I'm glad that things are going well so far.  It sounds like you have a really good plan in place.  Yes, ipi can be a little slow to work so giving it time is often needed as many of the experts and their published papers now attest to.  The MK-3475 sounds like a good back-up and perhaps (fingers crossed!!!) it and other anti-PD1 products will just be on the market, no strings attached, by the time your dad needs them…OR…even better!!!…he won't need them at all.  Bottom line, he has a great advocate in you!  Sometimes that makes all the difference.  I wish you both my best!  Celeste

        • March 25, 2014 at 4:50 pm
        Ashley
        Participant

        Thanks again everyone.  We had a bit of a blow yesterday… my dad had 2 brain mets, the one he removed and a smaller one that they had originally said was the size of a pea.  Yesterday they said they would like to do another craniotomy next week on my dad (just 2 weeks after his first one).  Its more like an acorn than a pea, and they don't think they can get it with radiation w/o potentially causing him some problems, including seizures.  Its great that they want to treat him, I'm so thankful, but we just weren't expecting it.  He also started IPI yesterday, so I'm praying everything is going to be looking positive from this point forward 🙂

        • March 25, 2014 at 4:50 pm
        Ashley
        Participant

        Thanks again everyone.  We had a bit of a blow yesterday… my dad had 2 brain mets, the one he removed and a smaller one that they had originally said was the size of a pea.  Yesterday they said they would like to do another craniotomy next week on my dad (just 2 weeks after his first one).  Its more like an acorn than a pea, and they don't think they can get it with radiation w/o potentially causing him some problems, including seizures.  Its great that they want to treat him, I'm so thankful, but we just weren't expecting it.  He also started IPI yesterday, so I'm praying everything is going to be looking positive from this point forward 🙂

        • March 25, 2014 at 4:50 pm
        Ashley
        Participant

        Thanks again everyone.  We had a bit of a blow yesterday… my dad had 2 brain mets, the one he removed and a smaller one that they had originally said was the size of a pea.  Yesterday they said they would like to do another craniotomy next week on my dad (just 2 weeks after his first one).  Its more like an acorn than a pea, and they don't think they can get it with radiation w/o potentially causing him some problems, including seizures.  Its great that they want to treat him, I'm so thankful, but we just weren't expecting it.  He also started IPI yesterday, so I'm praying everything is going to be looking positive from this point forward 🙂

        • March 28, 2014 at 2:37 am
        Bubbles
        Participant

        Hey Ashley,

        You and your dad hang in there.  I know this is more than a "blow"!!!  But, it sounds like you have a good team.  I know your dad has an incredible support system in you!  Wishing you both my best.  c

        • March 28, 2014 at 2:37 am
        Bubbles
        Participant

        Hey Ashley,

        You and your dad hang in there.  I know this is more than a "blow"!!!  But, it sounds like you have a good team.  I know your dad has an incredible support system in you!  Wishing you both my best.  c

        • March 28, 2014 at 2:37 am
        Bubbles
        Participant

        Hey Ashley,

        You and your dad hang in there.  I know this is more than a "blow"!!!  But, it sounds like you have a good team.  I know your dad has an incredible support system in you!  Wishing you both my best.  c

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