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3.5 Years On Keytruda and still NED

Forums General Melanoma Community 3.5 Years On Keytruda and still NED

  • Post
    sweetaugust
    Participant

      Hi all!  Just giving an update that scans are all still perfect….3.5 years on Keytruda.  I feel great and healthy.  I'm not on any prescription meds (other than the Keytruda of course) and I don't take any Advil or Alleve or aspirin either.  I do have joint pains from time to time over the winter months, and some dry skin patches, but other than that, no complaints.

      All my best to you, Laurie

    Viewing 26 reply threads
    • Replies
        Bubbles
        Participant

          That's great! Congrats! Celeste

          Bubbles
          Participant

            That's great! Congrats! Celeste

            Bubbles
            Participant

              That's great! Congrats! Celeste

              DZnDef
              Participant

                Outstanding news, Laurie!!  I'm so glad that you are not only NED but also drug-free (apart from the Keytruda, of course)!  One of the reasons I'm terrified of the drugs is due to all of the side-effects that then appear to need more drugs which then cause their own side-effects, etc. etc.  So glad to learn that you have managed without additional drugs.  I hope you'll continue with perfect scans and please do continue to update us!

                Cheers!

                Maggie

                  sweetaugust
                  Participant

                    Hi Maggie!  Great to hear from you.  I too was worried about drug after drug being piled on.  I have managed just fine without any drugs.  I feel very lucky.  πŸ™‚

                    sweetaugust
                    Participant

                      Hi Maggie!  Great to hear from you.  I too was worried about drug after drug being piled on.  I have managed just fine without any drugs.  I feel very lucky.  πŸ™‚

                      sweetaugust
                      Participant

                        Hi Maggie!  Great to hear from you.  I too was worried about drug after drug being piled on.  I have managed just fine without any drugs.  I feel very lucky.  πŸ™‚

                      DZnDef
                      Participant

                        Outstanding news, Laurie!!  I'm so glad that you are not only NED but also drug-free (apart from the Keytruda, of course)!  One of the reasons I'm terrified of the drugs is due to all of the side-effects that then appear to need more drugs which then cause their own side-effects, etc. etc.  So glad to learn that you have managed without additional drugs.  I hope you'll continue with perfect scans and please do continue to update us!

                        Cheers!

                        Maggie

                        DZnDef
                        Participant

                          Outstanding news, Laurie!!  I'm so glad that you are not only NED but also drug-free (apart from the Keytruda, of course)!  One of the reasons I'm terrified of the drugs is due to all of the side-effects that then appear to need more drugs which then cause their own side-effects, etc. etc.  So glad to learn that you have managed without additional drugs.  I hope you'll continue with perfect scans and please do continue to update us!

                          Cheers!

                          Maggie

                          Mat
                          Participant

                            Great news Laurie!  I'm still using the oatmeal moisturizer you recommend–good stuff.

                              sweetaugust
                              Participant

                                Hi Mat!  So glad the lotion worked for you.  I love hearing that.  That lotion tip has helped many different friends going through different cancer treatments as well. In case some of you are reading and wonder what we are talking about….we've been using Natures Gate Colloidal Oatmeal Lotion to help with the itchy, burning rash side effects of some treatments.  I would also mix in a few drops of Tea Tree Oil with the lotion as well.  The Tea Tree Oil smells a bit…but it's worth it because it works. I find that I only suffered this itching/burning rash in the winter months.  I was always fine come summer.  But the Natures Gate Colloidal Oatmeal lotion is what finally killed that burning rash from treatment.  

                                sweetaugust
                                Participant

                                  Hi Mat!  So glad the lotion worked for you.  I love hearing that.  That lotion tip has helped many different friends going through different cancer treatments as well. In case some of you are reading and wonder what we are talking about….we've been using Natures Gate Colloidal Oatmeal Lotion to help with the itchy, burning rash side effects of some treatments.  I would also mix in a few drops of Tea Tree Oil with the lotion as well.  The Tea Tree Oil smells a bit…but it's worth it because it works. I find that I only suffered this itching/burning rash in the winter months.  I was always fine come summer.  But the Natures Gate Colloidal Oatmeal lotion is what finally killed that burning rash from treatment.  

                                  sweetaugust
                                  Participant

                                    Hi Mat!  So glad the lotion worked for you.  I love hearing that.  That lotion tip has helped many different friends going through different cancer treatments as well. In case some of you are reading and wonder what we are talking about….we've been using Natures Gate Colloidal Oatmeal Lotion to help with the itchy, burning rash side effects of some treatments.  I would also mix in a few drops of Tea Tree Oil with the lotion as well.  The Tea Tree Oil smells a bit…but it's worth it because it works. I find that I only suffered this itching/burning rash in the winter months.  I was always fine come summer.  But the Natures Gate Colloidal Oatmeal lotion is what finally killed that burning rash from treatment.  

                                    jennunicorn
                                    Participant

                                      Thanks for the tip! I just started experiencing itchiness the past couple weeks and my Aveeno lotion wasn't working as well as it used to, so I saw this and bought that lotion. Already have tea tree oil in my assortment of essential oils, so I mixed a couple drops with the lotion and it already feels a lot better. 

                                      πŸ™‚

                                      sweetaugust
                                      Participant

                                        So great to hear!!!  Another thing that really helps as well is not showering with super hot water.  Keep it more warm.  So happy you are feeling better.  πŸ™‚  Laurie

                                        sweetaugust
                                        Participant

                                          So great to hear!!!  Another thing that really helps as well is not showering with super hot water.  Keep it more warm.  So happy you are feeling better.  πŸ™‚  Laurie

                                          sweetaugust
                                          Participant

                                            So great to hear!!!  Another thing that really helps as well is not showering with super hot water.  Keep it more warm.  So happy you are feeling better.  πŸ™‚  Laurie

                                            jennunicorn
                                            Participant

                                              Thanks for the tip! I just started experiencing itchiness the past couple weeks and my Aveeno lotion wasn't working as well as it used to, so I saw this and bought that lotion. Already have tea tree oil in my assortment of essential oils, so I mixed a couple drops with the lotion and it already feels a lot better. 

                                              πŸ™‚

                                              jennunicorn
                                              Participant

                                                Thanks for the tip! I just started experiencing itchiness the past couple weeks and my Aveeno lotion wasn't working as well as it used to, so I saw this and bought that lotion. Already have tea tree oil in my assortment of essential oils, so I mixed a couple drops with the lotion and it already feels a lot better. 

                                                πŸ™‚

                                              Mat
                                              Participant

                                                Great news Laurie!  I'm still using the oatmeal moisturizer you recommend–good stuff.

                                                Mat
                                                Participant

                                                  Great news Laurie!  I'm still using the oatmeal moisturizer you recommend–good stuff.

                                                  Maria C
                                                  Participant

                                                    Hi Laurie – thanks for sharing and congratulations!! Fabulous news for you and inspiring for all!

                                                    Quick question – have you been taking keytruda once every 2 weeks for 3.5 years? How do you or your doctors know you still need it?

                                                    I asked my oncologist if any trials were done to see if the maintenance drug (nivo in my case) was really needed after the 4 infusions of the nivo/combo treatment, but apparently no trials studied results from the combo vs. the combo + maintenance, and then how long the maintenance treatment is needed. 

                                                    Regardless, again, so glad to hear you are living a drug-free life outside the one drug keeping your cancer at bay :-). And I love your username – sweetaugust – are you a Leo??

                                                    Cheers,

                                                     

                                                     

                                                     

                                                    Maria C
                                                    Participant

                                                      Hi Laurie – thanks for sharing and congratulations!! Fabulous news for you and inspiring for all!

                                                      Quick question – have you been taking keytruda once every 2 weeks for 3.5 years? How do you or your doctors know you still need it?

                                                      I asked my oncologist if any trials were done to see if the maintenance drug (nivo in my case) was really needed after the 4 infusions of the nivo/combo treatment, but apparently no trials studied results from the combo vs. the combo + maintenance, and then how long the maintenance treatment is needed. 

                                                      Regardless, again, so glad to hear you are living a drug-free life outside the one drug keeping your cancer at bay :-). And I love your username – sweetaugust – are you a Leo??

                                                      Cheers,

                                                       

                                                       

                                                       

                                                      Maria C
                                                      Participant

                                                        Hi Laurie – thanks for sharing and congratulations!! Fabulous news for you and inspiring for all!

                                                        Quick question – have you been taking keytruda once every 2 weeks for 3.5 years? How do you or your doctors know you still need it?

                                                        I asked my oncologist if any trials were done to see if the maintenance drug (nivo in my case) was really needed after the 4 infusions of the nivo/combo treatment, but apparently no trials studied results from the combo vs. the combo + maintenance, and then how long the maintenance treatment is needed. 

                                                        Regardless, again, so glad to hear you are living a drug-free life outside the one drug keeping your cancer at bay :-). And I love your username – sweetaugust – are you a Leo??

                                                        Cheers,

                                                         

                                                         

                                                         

                                                        Gwen in Maine
                                                        Participant

                                                          Great news Laurie! Thanks for letting us know.

                                                          Gwen

                                                          Gwen in Maine
                                                          Participant

                                                            Great news Laurie! Thanks for letting us know.

                                                            Gwen

                                                            Gwen in Maine
                                                            Participant

                                                              Great news Laurie! Thanks for letting us know.

                                                              Gwen

                                                              BrianP
                                                              Participant

                                                                Always great to hear from you Laurie especially if it's good updates. 

                                                                I'm curious what Dr. Hodi's long term outlook is.  Is he recommending to stay on treatment indefinitely or until side effects?  Would love to hear any insights to his thinking if you have any.  Thanks.

                                                                Brian

                                                                BrianP
                                                                Participant

                                                                  Always great to hear from you Laurie especially if it's good updates. 

                                                                  I'm curious what Dr. Hodi's long term outlook is.  Is he recommending to stay on treatment indefinitely or until side effects?  Would love to hear any insights to his thinking if you have any.  Thanks.

                                                                  Brian

                                                                  BrianP
                                                                  Participant

                                                                    Always great to hear from you Laurie especially if it's good updates. 

                                                                    I'm curious what Dr. Hodi's long term outlook is.  Is he recommending to stay on treatment indefinitely or until side effects?  Would love to hear any insights to his thinking if you have any.  Thanks.

                                                                    Brian

                                                                    sweetaugust
                                                                    Participant

                                                                      And to Brian and Maria…

                                                                      Maria – I am on the highest dose of Keytruda.  I am at 3mg every 3 weeks for 3.5 years now.  That was the randomized amount I was selected for at the beginning of my two-year trial.  I was originally signed up for two years of the drug, but after a year they decided to keep me on it without an end date.

                                                                      Brian – I have asked Dr. Hodi and the team when might be a good time to come off treatment.  Their recommendation was to continue on Keytruda and change nothing.   They mentioned that some of the patients that handled Keytruda very well, like myself, came off of it and had reoccurance.  And they mentioned that some of the patients that had a very tough time with Keytruda, came off of it, and they have been completely fine and free of disease.  So it is still too early to tell what the right answer would be.  And since I am doing great, why rock the boat.  So I agreed.  How are you doing?

                                                                      sweetaugust
                                                                      Participant

                                                                        And to Brian and Maria…

                                                                        Maria – I am on the highest dose of Keytruda.  I am at 3mg every 3 weeks for 3.5 years now.  That was the randomized amount I was selected for at the beginning of my two-year trial.  I was originally signed up for two years of the drug, but after a year they decided to keep me on it without an end date.

                                                                        Brian – I have asked Dr. Hodi and the team when might be a good time to come off treatment.  Their recommendation was to continue on Keytruda and change nothing.   They mentioned that some of the patients that handled Keytruda very well, like myself, came off of it and had reoccurance.  And they mentioned that some of the patients that had a very tough time with Keytruda, came off of it, and they have been completely fine and free of disease.  So it is still too early to tell what the right answer would be.  And since I am doing great, why rock the boat.  So I agreed.  How are you doing?

                                                                          tschmith
                                                                          Participant

                                                                            Hi Laurie!  

                                                                            So happy to hear your continued good news!

                                                                             It's been a wonderful drug for me as well.  To stay on or go off!!!  That's the question!  Dr. Atkins took me off last June after a clean PET scan.  (I received infusions for a year but prior to Keytruda, I participated in a gene therapy trial at NIH.  I'm considered a combination success.)  I'm doing well…no progression.  I tolerated Keytruda quite well.  I had fatigue but it really wasn't that bad.  I also had dry, itchy patches of skin and vitiligo. 

                                                                            Yah!!!!

                                                                            Terrie

                                                                             

                                                                            tschmith
                                                                            Participant

                                                                              Hi Laurie!  

                                                                              So happy to hear your continued good news!

                                                                               It's been a wonderful drug for me as well.  To stay on or go off!!!  That's the question!  Dr. Atkins took me off last June after a clean PET scan.  (I received infusions for a year but prior to Keytruda, I participated in a gene therapy trial at NIH.  I'm considered a combination success.)  I'm doing well…no progression.  I tolerated Keytruda quite well.  I had fatigue but it really wasn't that bad.  I also had dry, itchy patches of skin and vitiligo. 

                                                                              Yah!!!!

                                                                              Terrie

                                                                               

                                                                              tschmith
                                                                              Participant

                                                                                Hi Laurie!  

                                                                                So happy to hear your continued good news!

                                                                                 It's been a wonderful drug for me as well.  To stay on or go off!!!  That's the question!  Dr. Atkins took me off last June after a clean PET scan.  (I received infusions for a year but prior to Keytruda, I participated in a gene therapy trial at NIH.  I'm considered a combination success.)  I'm doing well…no progression.  I tolerated Keytruda quite well.  I had fatigue but it really wasn't that bad.  I also had dry, itchy patches of skin and vitiligo. 

                                                                                Yah!!!!

                                                                                Terrie

                                                                                 

                                                                                BrianP
                                                                                Participant

                                                                                  I'm doing great Laurie.  Thanks for asking.  I posted this a couple weeks ago.

                                                                                  http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/10-year-anniversary

                                                                                  I elected to stop Opdivo last August.  Next scan scheduled the beginning of April.  For those coming behind us I really hope they release data soon on the recurrence rate for those stopping treatment.  It's such a tough choice to make when you don't have any data to support your decision.  Good luck to you. 

                                                                                  Brian

                                                                                  BrianP
                                                                                  Participant

                                                                                    I'm doing great Laurie.  Thanks for asking.  I posted this a couple weeks ago.

                                                                                    http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/10-year-anniversary

                                                                                    I elected to stop Opdivo last August.  Next scan scheduled the beginning of April.  For those coming behind us I really hope they release data soon on the recurrence rate for those stopping treatment.  It's such a tough choice to make when you don't have any data to support your decision.  Good luck to you. 

                                                                                    Brian

                                                                                    BrianP
                                                                                    Participant

                                                                                      I'm doing great Laurie.  Thanks for asking.  I posted this a couple weeks ago.

                                                                                      http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/10-year-anniversary

                                                                                      I elected to stop Opdivo last August.  Next scan scheduled the beginning of April.  For those coming behind us I really hope they release data soon on the recurrence rate for those stopping treatment.  It's such a tough choice to make when you don't have any data to support your decision.  Good luck to you. 

                                                                                      Brian

                                                                                      sweetaugust
                                                                                      Participant

                                                                                        Brian – I'm so glad you are doing so well.  I am not on the board very often anymore, now that I really don't even think or remember I am sick.  I feel like such a regular human again…which is fantastic.  

                                                                                        I found this board 1.5 years after I became stage 4 and it was such a huge help once I found it.  But when I do come back just to check things out, I look forward to seeing those names, like yours, that I had gotten to know back then.  You are always so kind and supportive.  I wish nothing but great results in April and always.

                                                                                        Laurie 

                                                                                        sweetaugust
                                                                                        Participant

                                                                                          Brian – I'm so glad you are doing so well.  I am not on the board very often anymore, now that I really don't even think or remember I am sick.  I feel like such a regular human again…which is fantastic.  

                                                                                          I found this board 1.5 years after I became stage 4 and it was such a huge help once I found it.  But when I do come back just to check things out, I look forward to seeing those names, like yours, that I had gotten to know back then.  You are always so kind and supportive.  I wish nothing but great results in April and always.

                                                                                          Laurie 

                                                                                          sweetaugust
                                                                                          Participant

                                                                                            Brian – I'm so glad you are doing so well.  I am not on the board very often anymore, now that I really don't even think or remember I am sick.  I feel like such a regular human again…which is fantastic.  

                                                                                            I found this board 1.5 years after I became stage 4 and it was such a huge help once I found it.  But when I do come back just to check things out, I look forward to seeing those names, like yours, that I had gotten to know back then.  You are always so kind and supportive.  I wish nothing but great results in April and always.

                                                                                            Laurie 

                                                                                          sweetaugust
                                                                                          Participant

                                                                                            And to Brian and Maria…

                                                                                            Maria – I am on the highest dose of Keytruda.  I am at 3mg every 3 weeks for 3.5 years now.  That was the randomized amount I was selected for at the beginning of my two-year trial.  I was originally signed up for two years of the drug, but after a year they decided to keep me on it without an end date.

                                                                                            Brian – I have asked Dr. Hodi and the team when might be a good time to come off treatment.  Their recommendation was to continue on Keytruda and change nothing.   They mentioned that some of the patients that handled Keytruda very well, like myself, came off of it and had reoccurance.  And they mentioned that some of the patients that had a very tough time with Keytruda, came off of it, and they have been completely fine and free of disease.  So it is still too early to tell what the right answer would be.  And since I am doing great, why rock the boat.  So I agreed.  How are you doing?

                                                                                            WITom
                                                                                            Participant

                                                                                              Congrats – so happy that your not only NED but also feeling great! I hope and pray this remains the case for very long time!

                                                                                              Tom

                                                                                              WITom
                                                                                              Participant

                                                                                                Congrats – so happy that your not only NED but also feeling great! I hope and pray this remains the case for very long time!

                                                                                                Tom

                                                                                                WITom
                                                                                                Participant

                                                                                                  Congrats – so happy that your not only NED but also feeling great! I hope and pray this remains the case for very long time!

                                                                                                  Tom

                                                                                                  Momofjake
                                                                                                  Participant

                                                                                                    This is just great to read! Thanks for sharing this. Hoping keytruda will kick in for my son! Stay strong!!

                                                                                                    kerri

                                                                                                    Momofjake
                                                                                                    Participant

                                                                                                      This is just great to read! Thanks for sharing this. Hoping keytruda will kick in for my son! Stay strong!!

                                                                                                      kerri

                                                                                                      Momofjake
                                                                                                      Participant

                                                                                                        This is just great to read! Thanks for sharing this. Hoping keytruda will kick in for my son! Stay strong!!

                                                                                                        kerri

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