The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Keytruda – Side Effects Kicking In!

Forums General Melanoma Community Keytruda – Side Effects Kicking In!

  • Post
    rick1981
    Participant

      Hi everyone, My wife (Stage IV since June '14) has started on Keytruda Wednesday this week and she also got a shot of Xgeva to strengthen her bones. She was in a pretty good physical condition at that point, walking every day, feeling well – but she has gotten severe bone/joint pains and has had fever & sweating spells since. I have looked at the archives here at MPIP and have found that Pembro can cause arthritis-like symptoms and the Xgeva could cause the fever. But if you have any more thoughts, I'd be happy to hear as it's just a shock to see her move from such a good state to being bed-ridden after the start of Keytruda. Just hope these are side effects (and not directly due to the melanoma; she had "tumor fevers" in June) and that these are signals of the therapy working. It’s scary to see her change so quickly… Thanks for any advice!

       

    Viewing 15 reply threads
    • Replies
        arthurjedi007
        Participant

          Wow. I'm on both. Been on Xgeva since February and Keytruda since May 21. Key every 3 weeks and Xgeva every 4 weeks. One thing I've done is seperate my Xgeva dose by a week even if that means I have to go 5 weeks for it. This last time though I did get it the very next day. So key on Tuesday and xgeva on Wednesday. The nurse practitioner (I rarely see the doc) said I could get it the same day. When I questioned my concern about getting both at once she said yes she would much prefer I get them the next day if that was okay with me. Sooo read into that what you will.

          As far as fever they tell me mine are caused by Keytruda. That it is my immune system responding which is good. My fevers are usually less than 101 although once a few weeks ago it did get up to 102.9 before the tylenol finally knocked it back down. I usually get these pretty much every day but usually they go away on their own without the tylenol. Also with the fever I sometimes get the chills where I can't stop shaking until I get under a blanket with a heating pad for a little while.

          For the severe bone/joint pains that can be a side affect of xgeva. Bone pains they say in their list is very common.. Now whether that is because of the medicine or just the nature of us needing the medicine I dunno. For me usually for a couple days after Xgeva various bones do hurt a lot but they go away after a few days. I especially noticed this with the first 5 or so doses but not as much anymore. When I mean a lot it is usually about the size of a quarter somewhere with grade level 8 or more pain. When I asked the doc way back he said it was the xgeva strengthening my bones.

          Dunno if that helps. Best of luck to you both.

          Artie

           

          arthurjedi007
          Participant

            Wow. I'm on both. Been on Xgeva since February and Keytruda since May 21. Key every 3 weeks and Xgeva every 4 weeks. One thing I've done is seperate my Xgeva dose by a week even if that means I have to go 5 weeks for it. This last time though I did get it the very next day. So key on Tuesday and xgeva on Wednesday. The nurse practitioner (I rarely see the doc) said I could get it the same day. When I questioned my concern about getting both at once she said yes she would much prefer I get them the next day if that was okay with me. Sooo read into that what you will.

            As far as fever they tell me mine are caused by Keytruda. That it is my immune system responding which is good. My fevers are usually less than 101 although once a few weeks ago it did get up to 102.9 before the tylenol finally knocked it back down. I usually get these pretty much every day but usually they go away on their own without the tylenol. Also with the fever I sometimes get the chills where I can't stop shaking until I get under a blanket with a heating pad for a little while.

            For the severe bone/joint pains that can be a side affect of xgeva. Bone pains they say in their list is very common.. Now whether that is because of the medicine or just the nature of us needing the medicine I dunno. For me usually for a couple days after Xgeva various bones do hurt a lot but they go away after a few days. I especially noticed this with the first 5 or so doses but not as much anymore. When I mean a lot it is usually about the size of a quarter somewhere with grade level 8 or more pain. When I asked the doc way back he said it was the xgeva strengthening my bones.

            Dunno if that helps. Best of luck to you both.

            Artie

             

            arthurjedi007
            Participant

              Wow. I'm on both. Been on Xgeva since February and Keytruda since May 21. Key every 3 weeks and Xgeva every 4 weeks. One thing I've done is seperate my Xgeva dose by a week even if that means I have to go 5 weeks for it. This last time though I did get it the very next day. So key on Tuesday and xgeva on Wednesday. The nurse practitioner (I rarely see the doc) said I could get it the same day. When I questioned my concern about getting both at once she said yes she would much prefer I get them the next day if that was okay with me. Sooo read into that what you will.

              As far as fever they tell me mine are caused by Keytruda. That it is my immune system responding which is good. My fevers are usually less than 101 although once a few weeks ago it did get up to 102.9 before the tylenol finally knocked it back down. I usually get these pretty much every day but usually they go away on their own without the tylenol. Also with the fever I sometimes get the chills where I can't stop shaking until I get under a blanket with a heating pad for a little while.

              For the severe bone/joint pains that can be a side affect of xgeva. Bone pains they say in their list is very common.. Now whether that is because of the medicine or just the nature of us needing the medicine I dunno. For me usually for a couple days after Xgeva various bones do hurt a lot but they go away after a few days. I especially noticed this with the first 5 or so doses but not as much anymore. When I mean a lot it is usually about the size of a quarter somewhere with grade level 8 or more pain. When I asked the doc way back he said it was the xgeva strengthening my bones.

              Dunno if that helps. Best of luck to you both.

              Artie

               

              Bubbles
              Participant

                Hey Rick,

                Sorry your wife is dealing with such side effects.  Up til now, fevers have not shown up in the data as recognized side effects for the anti-PD1 products. As was the case with ipi, when more folks gained access to it and took it…we learned a lot more about effects and side effects. I suspect that as more people take the anti-PD1 drugs we will learn more about what they do as well.  I took nivo for 2 1/2 years and experienced fatigue, itching, mouth ulcers, arthralgias, some wheezing, and vitiligo.  Never any specific fever for me. But….Artie seems to be dealing with an experience much like your wife.

                Here is a list of what the data has shown thus far as side effects to anti-PD1:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/background-and-latest-info-on-anti-pd1.html

                And just this month, this article regarding arthritis in anti-PD1 patients…..sometimes continuing years after taking the drug…was published:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/arthritis-associated-with-anti-pd1.html

                The only other thing I can tell you from my experience is that the side effects I had did wax and wane oddly…without real rhyme nor reason.  So, I hope that your wife's symptoms will abate as mysteriously as they arose.  Wishing you both my best.  Celeste

                Bubbles
                Participant

                  Hey Rick,

                  Sorry your wife is dealing with such side effects.  Up til now, fevers have not shown up in the data as recognized side effects for the anti-PD1 products. As was the case with ipi, when more folks gained access to it and took it…we learned a lot more about effects and side effects. I suspect that as more people take the anti-PD1 drugs we will learn more about what they do as well.  I took nivo for 2 1/2 years and experienced fatigue, itching, mouth ulcers, arthralgias, some wheezing, and vitiligo.  Never any specific fever for me. But….Artie seems to be dealing with an experience much like your wife.

                  Here is a list of what the data has shown thus far as side effects to anti-PD1:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/background-and-latest-info-on-anti-pd1.html

                  And just this month, this article regarding arthritis in anti-PD1 patients…..sometimes continuing years after taking the drug…was published:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/arthritis-associated-with-anti-pd1.html

                  The only other thing I can tell you from my experience is that the side effects I had did wax and wane oddly…without real rhyme nor reason.  So, I hope that your wife's symptoms will abate as mysteriously as they arose.  Wishing you both my best.  Celeste

                  Bubbles
                  Participant

                    Hey Rick,

                    Sorry your wife is dealing with such side effects.  Up til now, fevers have not shown up in the data as recognized side effects for the anti-PD1 products. As was the case with ipi, when more folks gained access to it and took it…we learned a lot more about effects and side effects. I suspect that as more people take the anti-PD1 drugs we will learn more about what they do as well.  I took nivo for 2 1/2 years and experienced fatigue, itching, mouth ulcers, arthralgias, some wheezing, and vitiligo.  Never any specific fever for me. But….Artie seems to be dealing with an experience much like your wife.

                    Here is a list of what the data has shown thus far as side effects to anti-PD1:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/04/background-and-latest-info-on-anti-pd1.html

                    And just this month, this article regarding arthritis in anti-PD1 patients…..sometimes continuing years after taking the drug…was published:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/11/arthritis-associated-with-anti-pd1.html

                    The only other thing I can tell you from my experience is that the side effects I had did wax and wane oddly…without real rhyme nor reason.  So, I hope that your wife's symptoms will abate as mysteriously as they arose.  Wishing you both my best.  Celeste

                    Jeanne321
                    Participant

                      Hi – I have been on Keytruda for 6 months. After each infusion I have a period of about 7 days of joint pain, sometimes severe. As quickly as it starts, it goes away. One day I can hardly walk and the next I'm perfectly fine. It is really frustrating. The last two infusions I tried acupuncture before the infusion and it seemed to help. It is worth a try. Good luck. 

                      Jeanne321
                      Participant

                        Hi – I have been on Keytruda for 6 months. After each infusion I have a period of about 7 days of joint pain, sometimes severe. As quickly as it starts, it goes away. One day I can hardly walk and the next I'm perfectly fine. It is really frustrating. The last two infusions I tried acupuncture before the infusion and it seemed to help. It is worth a try. Good luck. 

                          tschmith
                          Participant

                            HI!  I just received my 8th infusion of Keytruda.  After the first infusion, I had fevers in the afternoon for a few days and after about 10 days broke out with a red itchy rash everywhere.  I also felt some fatigue. I still have fatigue after the infusions but have not had any more fevers or rash.  After the third infusion I started noticing signs of vitaligo…not sure I spelled that correctly.  My eye lashes and eyebrows turned white and since then my skin is getting even whiter, my freckles are disappearing, and I have various totally white spots on my face and legs. Some moles have also slowly disappeared. I was getting shots of Xgeva, but my doctor does not want me to get them while I'm on Keytruda.  I  felt Xgeva was helping while I was on it.  At first it gave me flu like symptoms but they subsided.  I thought I would miss the Xgeva but the Keytruda seems to be doing a great job. 

                            Best wishes…Terrie

                            tschmith
                            Participant

                              HI!  I just received my 8th infusion of Keytruda.  After the first infusion, I had fevers in the afternoon for a few days and after about 10 days broke out with a red itchy rash everywhere.  I also felt some fatigue. I still have fatigue after the infusions but have not had any more fevers or rash.  After the third infusion I started noticing signs of vitaligo…not sure I spelled that correctly.  My eye lashes and eyebrows turned white and since then my skin is getting even whiter, my freckles are disappearing, and I have various totally white spots on my face and legs. Some moles have also slowly disappeared. I was getting shots of Xgeva, but my doctor does not want me to get them while I'm on Keytruda.  I  felt Xgeva was helping while I was on it.  At first it gave me flu like symptoms but they subsided.  I thought I would miss the Xgeva but the Keytruda seems to be doing a great job. 

                              Best wishes…Terrie

                              rick1981
                              Participant

                                Thanks so much for all the replies! I know that fevers and bone pains are not the most serious side effects possible, but the reason it scares me is that in June (time of Stage IV diagnosis) my wife went from feeling perfect to hardly possible to leave the bed in a few days. And what started this transition was fever combined with "excessive" sweating – which is exactly what she's experiencing now. Last night I had to change her night shirt 4 or 5 times. So I really hope this is due to the medicines (either one) not the "tumor fevers" she had last time…

                                @Artie. She's also doing the Pembro 3-weekly and Xvega 4-weekly. But she got both shots at the same time last week – as part of the first treatment. How bad are your bone pains? My wife can not walk without my support at the moment, although it seems to be improving slightly.

                                @Celeste. Fever is listed as a potential side effect of Pembro (on http://www.cancer.org; "less common" though) and "bone/joint/muscle" pains for Xvega and indeed arthritis-like symptons for Pembro as well. I did see that on your Blog – which I read frequently. You're a great source of information & inpisration for many of us out here. And since I'm Dutch, my wife Ukrainian and we live in Belgium – that explains at least 3 countries visiting your site ("Hello Kim…" post) πŸ˜‰

                                @Terrie. Did your fevers also coincide with "excessive" sweating?

                                To all of you…. hang in there & let's hope Pembro works it miracles! πŸ™‚

                                 

                                rick1981
                                Participant

                                  Thanks so much for all the replies! I know that fevers and bone pains are not the most serious side effects possible, but the reason it scares me is that in June (time of Stage IV diagnosis) my wife went from feeling perfect to hardly possible to leave the bed in a few days. And what started this transition was fever combined with "excessive" sweating – which is exactly what she's experiencing now. Last night I had to change her night shirt 4 or 5 times. So I really hope this is due to the medicines (either one) not the "tumor fevers" she had last time…

                                  @Artie. She's also doing the Pembro 3-weekly and Xvega 4-weekly. But she got both shots at the same time last week – as part of the first treatment. How bad are your bone pains? My wife can not walk without my support at the moment, although it seems to be improving slightly.

                                  @Celeste. Fever is listed as a potential side effect of Pembro (on http://www.cancer.org; "less common" though) and "bone/joint/muscle" pains for Xvega and indeed arthritis-like symptons for Pembro as well. I did see that on your Blog – which I read frequently. You're a great source of information & inpisration for many of us out here. And since I'm Dutch, my wife Ukrainian and we live in Belgium – that explains at least 3 countries visiting your site ("Hello Kim…" post) πŸ˜‰

                                  @Terrie. Did your fevers also coincide with "excessive" sweating?

                                  To all of you…. hang in there & let's hope Pembro works it miracles! πŸ™‚

                                   

                                  rick1981
                                  Participant

                                    Thanks so much for all the replies! I know that fevers and bone pains are not the most serious side effects possible, but the reason it scares me is that in June (time of Stage IV diagnosis) my wife went from feeling perfect to hardly possible to leave the bed in a few days. And what started this transition was fever combined with "excessive" sweating – which is exactly what she's experiencing now. Last night I had to change her night shirt 4 or 5 times. So I really hope this is due to the medicines (either one) not the "tumor fevers" she had last time…

                                    @Artie. She's also doing the Pembro 3-weekly and Xvega 4-weekly. But she got both shots at the same time last week – as part of the first treatment. How bad are your bone pains? My wife can not walk without my support at the moment, although it seems to be improving slightly.

                                    @Celeste. Fever is listed as a potential side effect of Pembro (on http://www.cancer.org; "less common" though) and "bone/joint/muscle" pains for Xvega and indeed arthritis-like symptons for Pembro as well. I did see that on your Blog – which I read frequently. You're a great source of information & inpisration for many of us out here. And since I'm Dutch, my wife Ukrainian and we live in Belgium – that explains at least 3 countries visiting your site ("Hello Kim…" post) πŸ˜‰

                                    @Terrie. Did your fevers also coincide with "excessive" sweating?

                                    To all of you…. hang in there & let's hope Pembro works it miracles! πŸ™‚

                                     

                                    arthurjedi007
                                    Participant

                                      For my bone pains when it is xgeva it is usually at least an 8 out of 10 on the pain scale. But it is usually small spots like the size of a quarter or so at various places. Also not a constant pain it comes and goes for two to three days then gone. Always right after the xgeva shot like as soon as an hour to within 12 hours they start. I don't know if it is because I've had several xgeva shots or if they have started warming it up better but the last few xgeva shots I haven't noticed these issues.

                                      Currently I'm also having difficulty walking but that seems to be a different issue. I have a tumor in the tibia bone right below my knee in my left leg. Also some tumors in my hip area. They are currently radiating those. I'm pretty sure these are a tumor issue and not xgeva or keytruda.

                                      Artie

                                      arthurjedi007
                                      Participant

                                        For my bone pains when it is xgeva it is usually at least an 8 out of 10 on the pain scale. But it is usually small spots like the size of a quarter or so at various places. Also not a constant pain it comes and goes for two to three days then gone. Always right after the xgeva shot like as soon as an hour to within 12 hours they start. I don't know if it is because I've had several xgeva shots or if they have started warming it up better but the last few xgeva shots I haven't noticed these issues.

                                        Currently I'm also having difficulty walking but that seems to be a different issue. I have a tumor in the tibia bone right below my knee in my left leg. Also some tumors in my hip area. They are currently radiating those. I'm pretty sure these are a tumor issue and not xgeva or keytruda.

                                        Artie

                                        arthurjedi007
                                        Participant

                                          For my bone pains when it is xgeva it is usually at least an 8 out of 10 on the pain scale. But it is usually small spots like the size of a quarter or so at various places. Also not a constant pain it comes and goes for two to three days then gone. Always right after the xgeva shot like as soon as an hour to within 12 hours they start. I don't know if it is because I've had several xgeva shots or if they have started warming it up better but the last few xgeva shots I haven't noticed these issues.

                                          Currently I'm also having difficulty walking but that seems to be a different issue. I have a tumor in the tibia bone right below my knee in my left leg. Also some tumors in my hip area. They are currently radiating those. I'm pretty sure these are a tumor issue and not xgeva or keytruda.

                                          Artie

                                          tschmith
                                          Participant

                                            HI!  I just received my 8th infusion of Keytruda.  After the first infusion, I had fevers in the afternoon for a few days and after about 10 days broke out with a red itchy rash everywhere.  I also felt some fatigue. I still have fatigue after the infusions but have not had any more fevers or rash.  After the third infusion I started noticing signs of vitaligo…not sure I spelled that correctly.  My eye lashes and eyebrows turned white and since then my skin is getting even whiter, my freckles are disappearing, and I have various totally white spots on my face and legs. Some moles have also slowly disappeared. I was getting shots of Xgeva, but my doctor does not want me to get them while I'm on Keytruda.  I  felt Xgeva was helping while I was on it.  At first it gave me flu like symptoms but they subsided.  I thought I would miss the Xgeva but the Keytruda seems to be doing a great job. 

                                            Best wishes…Terrie

                                          Jeanne321
                                          Participant

                                            Hi – I have been on Keytruda for 6 months. After each infusion I have a period of about 7 days of joint pain, sometimes severe. As quickly as it starts, it goes away. One day I can hardly walk and the next I'm perfectly fine. It is really frustrating. The last two infusions I tried acupuncture before the infusion and it seemed to help. It is worth a try. Good luck. 

                                            sweetaugust
                                            Participant

                                              Hi there,

                                              I started Keytruda on Oct 31, 2012.  I've been on it for two years and am now scheduled to be on it for good, with no end date.  I have never taken or really heard of Xgeva.

                                              In the first year, my side effects from Keytruda were some nausea and an itchy rash on my chest.  In the winter months it was worse than in the humid summer months…where all side effects seemed to vanish.  I also had a feeling of my organs being squeezed during the really cold days of winter. 

                                              In the second year, my side effects again included some nausea.  The rash that had been on my chest was gone, and instead the rash moved to the back of my head and on some of my face.  The face rash went away in the summer, but the head rash just went away in the past month.  Joint pain started last Spring, mostly just on the really cold days.  No joint pain in the summer.  And I have vitiligo that started to develop last Spring.  Its just on my shoulders and back, and one spot on my forehead.  All perfectly round dime, nickel, and quarter sizes.  7-10 vitiligo spots in total.

                                              Aside from the side effects, I have been quite healthy for the past two years.  Actually haven't really gotten a cold or the flu or bronchitis at all, where I used to get sick pretty much monthly.  Either that is due to the drug boosting my immune system, or it's my super healthy change in diet…or most likely I am healthier due to both the drug and my diet.  Either way, I feel quite lucky to be feeling fantastic.

                                              Much health and happiness to you all, Laurie

                                                rick1981
                                                Participant

                                                  Glad to hear you're feeling fantastic Laurie πŸ™‚ And good that it's working for you with manageable side effects. Keep on going!

                                                  rick1981
                                                  Participant

                                                    Glad to hear you're feeling fantastic Laurie πŸ™‚ And good that it's working for you with manageable side effects. Keep on going!

                                                    rick1981
                                                    Participant

                                                      Glad to hear you're feeling fantastic Laurie πŸ™‚ And good that it's working for you with manageable side effects. Keep on going!

                                                    sweetaugust
                                                    Participant

                                                      Hi there,

                                                      I started Keytruda on Oct 31, 2012.  I've been on it for two years and am now scheduled to be on it for good, with no end date.  I have never taken or really heard of Xgeva.

                                                      In the first year, my side effects from Keytruda were some nausea and an itchy rash on my chest.  In the winter months it was worse than in the humid summer months…where all side effects seemed to vanish.  I also had a feeling of my organs being squeezed during the really cold days of winter. 

                                                      In the second year, my side effects again included some nausea.  The rash that had been on my chest was gone, and instead the rash moved to the back of my head and on some of my face.  The face rash went away in the summer, but the head rash just went away in the past month.  Joint pain started last Spring, mostly just on the really cold days.  No joint pain in the summer.  And I have vitiligo that started to develop last Spring.  Its just on my shoulders and back, and one spot on my forehead.  All perfectly round dime, nickel, and quarter sizes.  7-10 vitiligo spots in total.

                                                      Aside from the side effects, I have been quite healthy for the past two years.  Actually haven't really gotten a cold or the flu or bronchitis at all, where I used to get sick pretty much monthly.  Either that is due to the drug boosting my immune system, or it's my super healthy change in diet…or most likely I am healthier due to both the drug and my diet.  Either way, I feel quite lucky to be feeling fantastic.

                                                      Much health and happiness to you all, Laurie

                                                      sweetaugust
                                                      Participant

                                                        Hi there,

                                                        I started Keytruda on Oct 31, 2012.  I've been on it for two years and am now scheduled to be on it for good, with no end date.  I have never taken or really heard of Xgeva.

                                                        In the first year, my side effects from Keytruda were some nausea and an itchy rash on my chest.  In the winter months it was worse than in the humid summer months…where all side effects seemed to vanish.  I also had a feeling of my organs being squeezed during the really cold days of winter. 

                                                        In the second year, my side effects again included some nausea.  The rash that had been on my chest was gone, and instead the rash moved to the back of my head and on some of my face.  The face rash went away in the summer, but the head rash just went away in the past month.  Joint pain started last Spring, mostly just on the really cold days.  No joint pain in the summer.  And I have vitiligo that started to develop last Spring.  Its just on my shoulders and back, and one spot on my forehead.  All perfectly round dime, nickel, and quarter sizes.  7-10 vitiligo spots in total.

                                                        Aside from the side effects, I have been quite healthy for the past two years.  Actually haven't really gotten a cold or the flu or bronchitis at all, where I used to get sick pretty much monthly.  Either that is due to the drug boosting my immune system, or it's my super healthy change in diet…or most likely I am healthier due to both the drug and my diet.  Either way, I feel quite lucky to be feeling fantastic.

                                                        Much health and happiness to you all, Laurie

                                                        rick1981
                                                        Participant

                                                          Just found out today that the bone pains my wife's having are probably not due to the Pembro or Xgeva, the detailed scan results from last week now indicate now only strong growth in the tumors in her spleen and liver but also several new bone metastasis – so that's probably the real issue. Haven't dared to tell my wife yet but hope the Pembro will kick in fast so I don't have to….

                                                          rick1981
                                                          Participant

                                                            Just found out today that the bone pains my wife's having are probably not due to the Pembro or Xgeva, the detailed scan results from last week now indicate now only strong growth in the tumors in her spleen and liver but also several new bone metastasis – so that's probably the real issue. Haven't dared to tell my wife yet but hope the Pembro will kick in fast so I don't have to….

                                                              Mat
                                                              Participant

                                                                Rick, you might consider supplementing the systemic treatments with targeted radiation for the bone mets.  It really does help with the pain.

                                                                Mat
                                                                Participant

                                                                  Rick, you might consider supplementing the systemic treatments with targeted radiation for the bone mets.  It really does help with the pain.

                                                                  Mat
                                                                  Participant

                                                                    Rick, you might consider supplementing the systemic treatments with targeted radiation for the bone mets.  It really does help with the pain.

                                                                  rick1981
                                                                  Participant

                                                                    Just found out today that the bone pains my wife's having are probably not due to the Pembro or Xgeva, the detailed scan results from last week now indicate now only strong growth in the tumors in her spleen and liver but also several new bone metastasis – so that's probably the real issue. Haven't dared to tell my wife yet but hope the Pembro will kick in fast so I don't have to….

                                                                    topcat2017
                                                                    Participant

                                                                      All of these posts sound so familiar.  I received Keytruda for a year and though I only had a partial response, it slowed my tumor enough to keep me alive…still.  I'm told that I'm the poster boy for side effects.  I had them all.  Now, I'm battling the side effects of the drug more than my cancer.  Keytruda shut down my pituitary, thyroid, adrenals, gonads, and everything else you can imagine.  I have not been able to regulate any of these issues lately after feeling pretty good for about six months.  I constantly feel like I've got the flu….with a hangover thrown in.  Though most of my worst symptoms seem to have been caused by the adrenal insufficiency, it's a mystery to me now.  I spend most of my life in bed and I'm normally a super healthy, strong, hard working individual.  I have been reduced to a sick patient who can barely work. I am taking Cortisone for the adrenal problems, Armour Thyroid for that problem, and I get Testosterone injections every two weeks to help with that.  I assume that there are another hundred things that I don't have, that I need to feel somewhat normal but I don't have the doctors who will spend the brain power to try and figure it out.  I'd really like to know if there is any information about the side effects caused by Keytruda and whether they are permanent or not.  I have a client who works for Merck and I've asked her to see if she can find out anything there in the Keytruda department with regard to that and even they don't seem to have any answers.  I was ok for about a year and just took the fatigue in stride, hitting the sack when I needed rest.  I was feeling good a majority of the time and usually had four or five days a week where I felt just fine.  I was even in the gym working out for an hour a day.  All that is impossible now.  It's flipped around now, where I'm spending five days a week in bed and two days up.  The quality of those two days isn't even very good.  I can work for an hour or two and that's about it.  

                                                                        Tudungly
                                                                        Participant

                                                                          I did not know about the joint pain, I was was on Keytruda for three months now. It does help me a lot with  my tumor. However I did experience an increase in TSH last treatment which affects my thyroid. I am still working. Good luck. Thank you for all the posts.

                                                                          1badhg
                                                                          Participant

                                                                            I have been on Keytruda since July, the drug has done a great job and has killed all of the tumors I had.  Had tumors under arm in chest, and had spread to my clavical.  I have not experienced any bad side effects.  But the last few weeks I have had bad pain in both my wrists and hands. Don't know whetherit is a side effect or not.  Doc said that it could be and suggested usual over the counter anti inflammatory medication.  I have about 6 or 7 more treatments to go and considering the outcome so far, I will tough it out.  For everyone reading this don't give up and try to beat this thing.

                                                                             

                                                                            Zcangiano
                                                                            Participant

                                                                              Hi there, My name is Zack and I'm writing on behalf of my father who is due to start Keytruda next week. While doing extensive research on this drug it has been had to find posts of peoples expereince in more recent weeks ad months vs years in similar forums. I woud love to hear more about your experience, your first 30 days to 6 months on the drug and any advice you may have for a newbie. I have just joined the melanomda research fondation forum but please feel free to shoot me an email if you have any spare time to discuss your journey thus far. my email is [email protected] …. – Thanks! and keep fighting!

                                                                        Viewing 15 reply threads
                                                                        • You must be logged in to reply to this topic.
                                                                        About the MRF Patient Forum

                                                                        The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                                        The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide byΒ MRF posting policies.

                                                                        Popular Topics