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Stage 4 – Good News Update

Forums General Melanoma Community Stage 4 – Good News Update

  • Post
    sweetaugust
    Participant

    Hi Everyone,

    I just wanted to let you know that I scanned last week and found out that all is well and I am still very healthy.  My disease is down to only that one bad node that had been the size of a peach, and is now the size of my thumbnail.  If you read my history, you'll see that my melanoma at the time of diagnosis (Oct 1, 2012 when I was 38 years old) was in several lymph nodes, all across my body, and I had a mass on my liver.   I have been on Merck's MK-3475 since October 31, 2012 (almost 2 years) and I couldn't be happier or feel luckier to be so healthy.

    Just trying to pass on the good news and I hope it helps those that are struggling.

    Much health and happiness to you all,

    Laurie

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  • Replies
      RJoeyB
      Participant

      Laurie,

      Thanks for sharing your great news, congratulations, that's awesome to hear!

      I'm curious, have your doctors discussed how you'll continue to use PD-1?  Will you continue receiving it for as long as you're stable or showing a response, or have they talked about trying to discontinue it at some point? 

      Again, great PD-1 story, congratulations!

      Joe

       

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      RJoeyB
      Participant

      Laurie,

      Thanks for sharing your great news, congratulations, that's awesome to hear!

      I'm curious, have your doctors discussed how you'll continue to use PD-1?  Will you continue receiving it for as long as you're stable or showing a response, or have they talked about trying to discontinue it at some point? 

      Again, great PD-1 story, congratulations!

      Joe

       

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      RJoeyB
      Participant

      Laurie,

      Thanks for sharing your great news, congratulations, that's awesome to hear!

      I'm curious, have your doctors discussed how you'll continue to use PD-1?  Will you continue receiving it for as long as you're stable or showing a response, or have they talked about trying to discontinue it at some point? 

      Again, great PD-1 story, congratulations!

      Joe

       

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        sweetaugust
        Participant

        Hi Joe,

        I'm not sure about an end date for my trial.  I originally signed up for two years on MK-3475 (which would be next month.)  Then a year into treatment they changed it to no end date.  I asked last week if it is something that they would maybe change the dosage to once every month or longer, instead of once every 3 weeks like I have been doing.  They said that was an excellent question, but too soon to say. 

        I am on the trial that is all about how much is too much.  So I think with my case….they are trying to see how long is best for patients…and that is why they changed it to no end date.

        I find myself wondering if it would be better to come off the trial 2 to 2.5 years into treatment and see what happens.  Or if I come off of treatment, will that mean the cancer will have a chance to get stronger and figure out a way to grow around the barriers the drug put up???

        Laurie

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        sweetaugust
        Participant

        Hi Joe,

        I'm not sure about an end date for my trial.  I originally signed up for two years on MK-3475 (which would be next month.)  Then a year into treatment they changed it to no end date.  I asked last week if it is something that they would maybe change the dosage to once every month or longer, instead of once every 3 weeks like I have been doing.  They said that was an excellent question, but too soon to say. 

        I am on the trial that is all about how much is too much.  So I think with my case….they are trying to see how long is best for patients…and that is why they changed it to no end date.

        I find myself wondering if it would be better to come off the trial 2 to 2.5 years into treatment and see what happens.  Or if I come off of treatment, will that mean the cancer will have a chance to get stronger and figure out a way to grow around the barriers the drug put up???

        Laurie

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        sweetaugust
        Participant

        Hi Joe,

        I'm not sure about an end date for my trial.  I originally signed up for two years on MK-3475 (which would be next month.)  Then a year into treatment they changed it to no end date.  I asked last week if it is something that they would maybe change the dosage to once every month or longer, instead of once every 3 weeks like I have been doing.  They said that was an excellent question, but too soon to say. 

        I am on the trial that is all about how much is too much.  So I think with my case….they are trying to see how long is best for patients…and that is why they changed it to no end date.

        I find myself wondering if it would be better to come off the trial 2 to 2.5 years into treatment and see what happens.  Or if I come off of treatment, will that mean the cancer will have a chance to get stronger and figure out a way to grow around the barriers the drug put up???

        Laurie

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      DZnDef
      Participant

      Congratulation, Laurie!  That is excellent news.  Thank you so much for sharing it with us.  As far as that one node the size of your thumbnail, are they sure there is still active disease in there?  Is it possible that it is necrotic?  I have read that sometimes a tumor doesn't disappear but it still "dies".   Great news in any event.

      Cheers – Maggie

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      DZnDef
      Participant

      Congratulation, Laurie!  That is excellent news.  Thank you so much for sharing it with us.  As far as that one node the size of your thumbnail, are they sure there is still active disease in there?  Is it possible that it is necrotic?  I have read that sometimes a tumor doesn't disappear but it still "dies".   Great news in any event.

      Cheers – Maggie

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      DZnDef
      Participant

      Congratulation, Laurie!  That is excellent news.  Thank you so much for sharing it with us.  As far as that one node the size of your thumbnail, are they sure there is still active disease in there?  Is it possible that it is necrotic?  I have read that sometimes a tumor doesn't disappear but it still "dies".   Great news in any event.

      Cheers – Maggie

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        sweetaugust
        Participant

        Hi Maggie,

        I tend to believe that that lymph node is as small as it will ever get.  It was the size of a baseball hanging out of me when it then blew up and liquified in April of 2013.  It has been dropping in size about 15% every 5 weeks since.  And now there is probably scar tissue around it from the trauma….which is why I believe it probably won't get any smaller than it is now. 

        My doctors don't say NED or anything like that because it is a lymph node that will always be in my body.  Unless it starts growing again of course…then I would have it removed.  But as long as it is behaving, they are just going to leave it in there and keep me on the trial…because that is the bad node that was biopsied to get me in the trial in the first place. I'd like to consider myself NED….but I really can't…can I???

        Laurie

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        sweetaugust
        Participant

        Hi Maggie,

        I tend to believe that that lymph node is as small as it will ever get.  It was the size of a baseball hanging out of me when it then blew up and liquified in April of 2013.  It has been dropping in size about 15% every 5 weeks since.  And now there is probably scar tissue around it from the trauma….which is why I believe it probably won't get any smaller than it is now. 

        My doctors don't say NED or anything like that because it is a lymph node that will always be in my body.  Unless it starts growing again of course…then I would have it removed.  But as long as it is behaving, they are just going to leave it in there and keep me on the trial…because that is the bad node that was biopsied to get me in the trial in the first place. I'd like to consider myself NED….but I really can't…can I???

        Laurie

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        sweetaugust
        Participant

        Hi Maggie,

        I tend to believe that that lymph node is as small as it will ever get.  It was the size of a baseball hanging out of me when it then blew up and liquified in April of 2013.  It has been dropping in size about 15% every 5 weeks since.  And now there is probably scar tissue around it from the trauma….which is why I believe it probably won't get any smaller than it is now. 

        My doctors don't say NED or anything like that because it is a lymph node that will always be in my body.  Unless it starts growing again of course…then I would have it removed.  But as long as it is behaving, they are just going to leave it in there and keep me on the trial…because that is the bad node that was biopsied to get me in the trial in the first place. I'd like to consider myself NED….but I really can't…can I???

        Laurie

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      BrianP
      Participant

      That is so great Laurie.  You and Ginger have made my day today. 

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      BrianP
      Participant

      That is so great Laurie.  You and Ginger have made my day today. 

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      BrianP
      Participant

      That is so great Laurie.  You and Ginger have made my day today. 

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        AnitaLoree
        Participant

        Laurie:  Such good news that Keytruda/Merck 3475 has given you new life!  Can you tell me if most of your tumors enlarged (like they reportedly do on ipi) before they died off?  My husband's mel in his cervical spine (only site, origin unk) seems to be stable since surgery 10/13 & radiation 02/14 but worried about con't to "watch & wait" per Kaiser oncologist.  Apprehensive about entering clinical trial on ipi bcs no where for tumor to expand except into the spinal cord some more.  We felt with the development of PD-1 tx it was most likely to help route. With FDA approval of Keytruda, Kaiser can give & he will start in 2 days, @ 2 mg/kg every 3 wks.  Maybe the drug caused expansion is just swelling, not invasion, and no permanent damage incurred. The detailed prescribing/mg't info I got from Merck does not mention tumor swelling as a side effect or phenomenon.  Did your docs ever say anything about tumors enlarging 1st?  So appreciate any advice you can give.  Hope your nausea, itchy very very minimal to none.  //AnitaLoree

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        AnitaLoree
        Participant

        Laurie:  Such good news that Keytruda/Merck 3475 has given you new life!  Can you tell me if most of your tumors enlarged (like they reportedly do on ipi) before they died off?  My husband's mel in his cervical spine (only site, origin unk) seems to be stable since surgery 10/13 & radiation 02/14 but worried about con't to "watch & wait" per Kaiser oncologist.  Apprehensive about entering clinical trial on ipi bcs no where for tumor to expand except into the spinal cord some more.  We felt with the development of PD-1 tx it was most likely to help route. With FDA approval of Keytruda, Kaiser can give & he will start in 2 days, @ 2 mg/kg every 3 wks.  Maybe the drug caused expansion is just swelling, not invasion, and no permanent damage incurred. The detailed prescribing/mg't info I got from Merck does not mention tumor swelling as a side effect or phenomenon.  Did your docs ever say anything about tumors enlarging 1st?  So appreciate any advice you can give.  Hope your nausea, itchy very very minimal to none.  //AnitaLoree

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        AnitaLoree
        Participant

        Laurie:  Such good news that Keytruda/Merck 3475 has given you new life!  Can you tell me if most of your tumors enlarged (like they reportedly do on ipi) before they died off?  My husband's mel in his cervical spine (only site, origin unk) seems to be stable since surgery 10/13 & radiation 02/14 but worried about con't to "watch & wait" per Kaiser oncologist.  Apprehensive about entering clinical trial on ipi bcs no where for tumor to expand except into the spinal cord some more.  We felt with the development of PD-1 tx it was most likely to help route. With FDA approval of Keytruda, Kaiser can give & he will start in 2 days, @ 2 mg/kg every 3 wks.  Maybe the drug caused expansion is just swelling, not invasion, and no permanent damage incurred. The detailed prescribing/mg't info I got from Merck does not mention tumor swelling as a side effect or phenomenon.  Did your docs ever say anything about tumors enlarging 1st?  So appreciate any advice you can give.  Hope your nausea, itchy very very minimal to none.  //AnitaLoree

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        sweetaugust
        Participant

        Hi AnitaLoree

        All my many other enlarged nodes and the mass on my liver just peacefully disappeared in the first 3 months of treatment and have remained gone.  It was just that one really aggressive node in my right arm pit, that had been biopsied and gotten me into the trial, that kept growing until I was 6 months into treatment.

        Actually, my oncologist and my surgeon got very excited about my results (when that node/tumor blew up) and went into what they called  "geek-speak" with each other.  They said my tumor responded just like patients on ipi….not necessarily like patients on MK-3475.  They also mentioned that in their experience, when a tumor blows up like mine did, where it blew up in 24 hours and was hanging out of me because it was liquifying and dying, that it takes other patients several weeks for the tumor size to reduce.  Mine shrank and was back to not hanging out of my arm pit within two days. 

        I haven't asked since then (April 2013) if others had similar responses on MK-3475. 

        Now, for me, I got my diagnosis and I changed a lot of things in my life to help my health.  I believe in both Eastern and Western Medicine.  I believe that the more healthy items I could put in my body, the better my chances would be to help fight this.  So I did not just sit back and put all my eggs in the basket of the drug trial.  I took an active part in doing as much as I could to better my health.  I started eating at least 80% raw organic fruits and veggies daily and I cut out all junk food, dairy, meat, white refined sugers, alcohol, and processed foods laden with chemicals.  I started using natural ingredients on my body instead of products loaded with chemicals.   I stopped using my microwave.  I got on a rebounder daily for at least 10 minutes to help pump the toxins out of my lymph nodes.  I basically did what I could to get the acid and inflammation out of my body.  It was amazing how fast the weight came off and how much better I felt.  I no longer seem to get the flu or colds or bronchitis.  My morning cough and allergies disappeared. 

        That is just how I chose to fight back and try and save my life.  Because I have always had trouble with any drug that has ever been prescribed to me, I was worried about the effects the MK-3475 would have.  I thought I would have a reaction to the drug and be taken off of it, so I was adament that my diet change was a MUST.  I don't take any other drugs (prescription or otherwise) because I am too afraid of their side effects.  So for me, I believe that the MK-3475 and my healthy ways together are what have given me such amazing results.  I'm not sure that the drug alone would have been enough for me, because my tumor was so aggressive and the doctors kept wanting to take me off the trial because of the tumors speedy growth.  Of course, we will never know for sure, so I will just keep up my healthy ways.  :)

        I hope this helps in some way.  :)

        All my best, Laurie

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        sweetaugust
        Participant

        Another thing I should add is that I was one week away from being taken off the MK-3475 trial and put into surgery because that node was so aggressive.  Had it not blown-up when it did, I would have had a very different path.  One with no lymph nodes in my right arm pit and one with no more MK-3475.  So that is why I say that it came down to the wire, and had I not made all the healthy changes 6 months prior to that, I feel I would be on a very different path.  One that might have been a bit more challenging than this path. 

        Laurie

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        DZnDef
        Participant

        You rock!

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        DZnDef
        Participant

        You rock!

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        DZnDef
        Participant

        You rock!

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        sweetaugust
        Participant

        Another thing I should add is that I was one week away from being taken off the MK-3475 trial and put into surgery because that node was so aggressive.  Had it not blown-up when it did, I would have had a very different path.  One with no lymph nodes in my right arm pit and one with no more MK-3475.  So that is why I say that it came down to the wire, and had I not made all the healthy changes 6 months prior to that, I feel I would be on a very different path.  One that might have been a bit more challenging than this path. 

        Laurie

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        sweetaugust
        Participant

        Another thing I should add is that I was one week away from being taken off the MK-3475 trial and put into surgery because that node was so aggressive.  Had it not blown-up when it did, I would have had a very different path.  One with no lymph nodes in my right arm pit and one with no more MK-3475.  So that is why I say that it came down to the wire, and had I not made all the healthy changes 6 months prior to that, I feel I would be on a very different path.  One that might have been a bit more challenging than this path. 

        Laurie

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        oldblue
        Participant

        Yes.It did help.Thank you Laurie for sharing.

        Nigel.

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        oldblue
        Participant

        Yes.It did help.Thank you Laurie for sharing.

        Nigel.

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        oldblue
        Participant

        Yes.It did help.Thank you Laurie for sharing.

        Nigel.

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        sweetaugust
        Participant

        Hi AnitaLoree

        All my many other enlarged nodes and the mass on my liver just peacefully disappeared in the first 3 months of treatment and have remained gone.  It was just that one really aggressive node in my right arm pit, that had been biopsied and gotten me into the trial, that kept growing until I was 6 months into treatment.

        Actually, my oncologist and my surgeon got very excited about my results (when that node/tumor blew up) and went into what they called  "geek-speak" with each other.  They said my tumor responded just like patients on ipi….not necessarily like patients on MK-3475.  They also mentioned that in their experience, when a tumor blows up like mine did, where it blew up in 24 hours and was hanging out of me because it was liquifying and dying, that it takes other patients several weeks for the tumor size to reduce.  Mine shrank and was back to not hanging out of my arm pit within two days. 

        I haven't asked since then (April 2013) if others had similar responses on MK-3475. 

        Now, for me, I got my diagnosis and I changed a lot of things in my life to help my health.  I believe in both Eastern and Western Medicine.  I believe that the more healthy items I could put in my body, the better my chances would be to help fight this.  So I did not just sit back and put all my eggs in the basket of the drug trial.  I took an active part in doing as much as I could to better my health.  I started eating at least 80% raw organic fruits and veggies daily and I cut out all junk food, dairy, meat, white refined sugers, alcohol, and processed foods laden with chemicals.  I started using natural ingredients on my body instead of products loaded with chemicals.   I stopped using my microwave.  I got on a rebounder daily for at least 10 minutes to help pump the toxins out of my lymph nodes.  I basically did what I could to get the acid and inflammation out of my body.  It was amazing how fast the weight came off and how much better I felt.  I no longer seem to get the flu or colds or bronchitis.  My morning cough and allergies disappeared. 

        That is just how I chose to fight back and try and save my life.  Because I have always had trouble with any drug that has ever been prescribed to me, I was worried about the effects the MK-3475 would have.  I thought I would have a reaction to the drug and be taken off of it, so I was adament that my diet change was a MUST.  I don't take any other drugs (prescription or otherwise) because I am too afraid of their side effects.  So for me, I believe that the MK-3475 and my healthy ways together are what have given me such amazing results.  I'm not sure that the drug alone would have been enough for me, because my tumor was so aggressive and the doctors kept wanting to take me off the trial because of the tumors speedy growth.  Of course, we will never know for sure, so I will just keep up my healthy ways.  :)

        I hope this helps in some way.  :)

        All my best, Laurie

        Loading spinner
        sweetaugust
        Participant

        Hi AnitaLoree

        All my many other enlarged nodes and the mass on my liver just peacefully disappeared in the first 3 months of treatment and have remained gone.  It was just that one really aggressive node in my right arm pit, that had been biopsied and gotten me into the trial, that kept growing until I was 6 months into treatment.

        Actually, my oncologist and my surgeon got very excited about my results (when that node/tumor blew up) and went into what they called  "geek-speak" with each other.  They said my tumor responded just like patients on ipi….not necessarily like patients on MK-3475.  They also mentioned that in their experience, when a tumor blows up like mine did, where it blew up in 24 hours and was hanging out of me because it was liquifying and dying, that it takes other patients several weeks for the tumor size to reduce.  Mine shrank and was back to not hanging out of my arm pit within two days. 

        I haven't asked since then (April 2013) if others had similar responses on MK-3475. 

        Now, for me, I got my diagnosis and I changed a lot of things in my life to help my health.  I believe in both Eastern and Western Medicine.  I believe that the more healthy items I could put in my body, the better my chances would be to help fight this.  So I did not just sit back and put all my eggs in the basket of the drug trial.  I took an active part in doing as much as I could to better my health.  I started eating at least 80% raw organic fruits and veggies daily and I cut out all junk food, dairy, meat, white refined sugers, alcohol, and processed foods laden with chemicals.  I started using natural ingredients on my body instead of products loaded with chemicals.   I stopped using my microwave.  I got on a rebounder daily for at least 10 minutes to help pump the toxins out of my lymph nodes.  I basically did what I could to get the acid and inflammation out of my body.  It was amazing how fast the weight came off and how much better I felt.  I no longer seem to get the flu or colds or bronchitis.  My morning cough and allergies disappeared. 

        That is just how I chose to fight back and try and save my life.  Because I have always had trouble with any drug that has ever been prescribed to me, I was worried about the effects the MK-3475 would have.  I thought I would have a reaction to the drug and be taken off of it, so I was adament that my diet change was a MUST.  I don't take any other drugs (prescription or otherwise) because I am too afraid of their side effects.  So for me, I believe that the MK-3475 and my healthy ways together are what have given me such amazing results.  I'm not sure that the drug alone would have been enough for me, because my tumor was so aggressive and the doctors kept wanting to take me off the trial because of the tumors speedy growth.  Of course, we will never know for sure, so I will just keep up my healthy ways.  :)

        I hope this helps in some way.  :)

        All my best, Laurie

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      Ginger8888
      Participant

      Great news, i also got scan results today that was great!! Congrats!!

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      Ginger8888
      Participant

      Great news, i also got scan results today that was great!! Congrats!!

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      Ginger8888
      Participant

      Great news, i also got scan results today that was great!! Congrats!!

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      Bubbles
      Participant

      Congrats!!!  That's wonderful!!!  c

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      Bubbles
      Participant

      Congrats!!!  That's wonderful!!!  c

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      Bubbles
      Participant

      Congrats!!!  That's wonderful!!!  c

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      arthurjedi007
      Participant

      Awesome. It is wonderful to hear success stories. Thank you.

      Artie

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        cavsnut
        Participant

        That's just awesome news….so happy for you!

        Craig

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        cavsnut
        Participant

        That's just awesome news….so happy for you!

        Craig

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        cavsnut
        Participant

        That's just awesome news….so happy for you!

        Craig

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      arthurjedi007
      Participant

      Awesome. It is wonderful to hear success stories. Thank you.

      Artie

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      arthurjedi007
      Participant

      Awesome. It is wonderful to hear success stories. Thank you.

      Artie

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