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sweetaugust

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      sweetaugust
      Participant

      Hi Bill

      Congratulations to you!  I love hearing the successes of Keytruda.  I was one of the first humans to get it when it was a trial back in 2012 at Dana Farber in Boston.  Back when they really didn't know as much as they do now. 

      I started Keytruda on 10/31/12 and was on it until Feb of this year.  It took my nodes 3 months to respond and all return to normal size.  But 6 months for the biopsied node to blow up and die.  So for me, everything was all good and nothing active since 2013.  My joint pain all subsided after I came off the drug.  And I am still doing great!

      All my best, Laurie

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      sweetaugust
      Participant

      Hi Kerri,

      So tough what you are going through.  I feel for you.  I don't know the answers and I wish I did.  Maybe Jake is following his gut.  I know when I hit stage 4 I looked at that as if it were up to me to save my life.  I personally didn't plan on signing up for all the treatments that were going to tear down my immune system.  I too had looked into a few places outside the US as options for more alternative therapies.  But I was offered Keytruda as an immunotherapy, which was an immune booster….so….I stopped packing my bags and I wanted to try the Keytruda that was offered to me.

      But that didn't mean I stopped there.  I still believed that I needed to give my body as much living enzymes and health as I possibly could to help the Kertruda go to work.  I believe in both Eastern and Western medicine and feel they can help each other.  So I changed everything.  Went 80% raw organic fruits and veggies, changed the cleaning products I used in my house to more natural, went for all natural products for my hair and skin, and I went to a holistic doctor to get his take….and I've used and stuck with most everything he told me.  My thought was that I obviously am more susceptible to illness and what can I do to better my chances in the fight of my life.  

      I only know that I did what I felt in my gut were the things I wanted to do.  I so wish I had the correct cocktail for Jake.  I wish I had the correct cocktail for you all suffering.  I can only offer you hope and my own story.

      A big hug and all the best,  Laurie

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      sweetaugust
      Participant

      Hi Kerri,

      So tough what you are going through.  I feel for you.  I don't know the answers and I wish I did.  Maybe Jake is following his gut.  I know when I hit stage 4 I looked at that as if it were up to me to save my life.  I personally didn't plan on signing up for all the treatments that were going to tear down my immune system.  I too had looked into a few places outside the US as options for more alternative therapies.  But I was offered Keytruda as an immunotherapy, which was an immune booster….so….I stopped packing my bags and I wanted to try the Keytruda that was offered to me.

      But that didn't mean I stopped there.  I still believed that I needed to give my body as much living enzymes and health as I possibly could to help the Kertruda go to work.  I believe in both Eastern and Western medicine and feel they can help each other.  So I changed everything.  Went 80% raw organic fruits and veggies, changed the cleaning products I used in my house to more natural, went for all natural products for my hair and skin, and I went to a holistic doctor to get his take….and I've used and stuck with most everything he told me.  My thought was that I obviously am more susceptible to illness and what can I do to better my chances in the fight of my life.  

      I only know that I did what I felt in my gut were the things I wanted to do.  I so wish I had the correct cocktail for Jake.  I wish I had the correct cocktail for you all suffering.  I can only offer you hope and my own story.

      A big hug and all the best,  Laurie

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      sweetaugust
      Participant

      Hi Kerri,

      So tough what you are going through.  I feel for you.  I don't know the answers and I wish I did.  Maybe Jake is following his gut.  I know when I hit stage 4 I looked at that as if it were up to me to save my life.  I personally didn't plan on signing up for all the treatments that were going to tear down my immune system.  I too had looked into a few places outside the US as options for more alternative therapies.  But I was offered Keytruda as an immunotherapy, which was an immune booster….so….I stopped packing my bags and I wanted to try the Keytruda that was offered to me.

      But that didn't mean I stopped there.  I still believed that I needed to give my body as much living enzymes and health as I possibly could to help the Kertruda go to work.  I believe in both Eastern and Western medicine and feel they can help each other.  So I changed everything.  Went 80% raw organic fruits and veggies, changed the cleaning products I used in my house to more natural, went for all natural products for my hair and skin, and I went to a holistic doctor to get his take….and I've used and stuck with most everything he told me.  My thought was that I obviously am more susceptible to illness and what can I do to better my chances in the fight of my life.  

      I only know that I did what I felt in my gut were the things I wanted to do.  I so wish I had the correct cocktail for Jake.  I wish I had the correct cocktail for you all suffering.  I can only offer you hope and my own story.

      A big hug and all the best,  Laurie

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      sweetaugust
      Participant

      It was exactly the same case for me.  So happy to hear another case like my own.  :)

      Thank you and Happy Thanksgiving to you and your wife.    Laurie

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      sweetaugust
      Participant

      Hi there,

      For me, the joint pain didn't start until after a couple years on Keytruda.  And I never took anything for it. 

      And I was the one who decided it was time for a break.  Nikki had asked the same question and I answered below. 

      I wish you amazing success and no pain.  All light no stress….if possible.

      Happy Thanksgiving!  Laurie

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      sweetaugust
      Participant

      Hi Niki,

      I ended up deciding that I wanted the break.  I had looked at the data.  And now that Pembro has been approved and is commercially available as Keytruda…that changed things a bit.  And with that approval, they were thinking that once the melanoma disappeared and there was no evidence of disease, that patients were okay to come off the drug after 6 months of no disease.  So I started wondering why I was still on it then…if everyone else was able to come off.  I had been fine and no evidence of disease for 3 years.  So I really started worrying about how much is too much and what about side effects that can become irreversable.  It started to consume me…the worry that I really felt it was time for a break.  And I am thrilled with my decision.  :)

      If it comes back, then I go on Keytruda commercially this time, instead of on the trial. 

      Congrats to you for doing so well.  And my joint pain is mostly all gone since coming off the drug.  So maybe it could be the same for you too. 

      Happy Thanksgiving!  I know we are two thankful people.  :)     Laurie

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      sweetaugust
      Participant

      Excellent questions Niki!

      No more joint pain. I do still have the rash on the neck of my neck. It's come back with the cold weather like it has every winter since starting Keytruda. And I never had thyroid issues.   

      They still scan me and check my bloods every three months. And my bloods and scans are totally normal.  And now that I'm off treatment, it's easier to forget that I was ever in deep trouble. 

      But of course I don't really forget. I help people every day with my story. I work as a surgical coordinator for breast cancer patients. So I am able to get those that are really scared, through this process. 

      And to your final note….yes, when I go into a Dermatologist's office….all the doctors and residents and nurses look at me like I'm a celebrity. They call me a celebrity for the fact that I was on Keytruda for so long. 

      All the best, Laurie

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      sweetaugust
      Participant

      Wow Barb!  So glad to hear that my story/reality was so helpful!  Love hearing that. I hope you and your sister are doing great. :)

      All the best to you!

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      sweetaugust
      Participant

      Exactly how I feel Niki!!!  Exactly!  :)

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      sweetaugust
      Participant

      Exactly how I feel Niki!!!  Exactly!  :)

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      sweetaugust
      Participant

      Exactly how I feel Niki!!!  Exactly!  :)

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      sweetaugust
      Participant

      Thanks Niki!  I appreciate the articles.  I've been stable since December 2013. And I keep hearing that lots of doctors are thinking 6 months after being stable is a good amount.  So I talked to my doctors about it and they just don't want to take chances because the drug is so new.  And I had been told a couple years ago that if I came off the drug, that the melanoma should never grow back…as the body had been re-trained.  So I mentioned that a few months ago to my doctors, that if I came off isn't my body re-trained and I should be fine…and they said it's just too soon to tell.  I just don't want to go too far and just let the side effects mount up until I am then forced into taking more drugs to counter the effects.  

      Thank you so much for the help.  Have a great night,

      Laurie

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      sweetaugust
      Participant

      Thanks Niki!  I appreciate the articles.  I've been stable since December 2013. And I keep hearing that lots of doctors are thinking 6 months after being stable is a good amount.  So I talked to my doctors about it and they just don't want to take chances because the drug is so new.  And I had been told a couple years ago that if I came off the drug, that the melanoma should never grow back…as the body had been re-trained.  So I mentioned that a few months ago to my doctors, that if I came off isn't my body re-trained and I should be fine…and they said it's just too soon to tell.  I just don't want to go too far and just let the side effects mount up until I am then forced into taking more drugs to counter the effects.  

      Thank you so much for the help.  Have a great night,

      Laurie

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      sweetaugust
      Participant

      Thanks Niki!  I appreciate the articles.  I've been stable since December 2013. And I keep hearing that lots of doctors are thinking 6 months after being stable is a good amount.  So I talked to my doctors about it and they just don't want to take chances because the drug is so new.  And I had been told a couple years ago that if I came off the drug, that the melanoma should never grow back…as the body had been re-trained.  So I mentioned that a few months ago to my doctors, that if I came off isn't my body re-trained and I should be fine…and they said it's just too soon to tell.  I just don't want to go too far and just let the side effects mount up until I am then forced into taking more drugs to counter the effects.  

      Thank you so much for the help.  Have a great night,

      Laurie

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