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Yervoy Fatigue

Forums General Melanoma Community Yervoy Fatigue

  • Post
    sjl
    Participant

      My husband had his third round of yervoy 2 weeks ago.  He's also on pain meds for tumor growth that is causing jaw pain.  Although he's had some fatigue intermittently since starting treatment and during his prior treatment of carbo/taxol, he's had a whole new level of fatigue for the past week or so.  Some days he can't make it to his office job at all and on others he can work only a few hours before he needs to come home.  The fatigue can come on fast.  It's overwhelming.  Bloodwork done yesterday showed everything to be normal, we were t

      My husband had his third round of yervoy 2 weeks ago.  He's also on pain meds for tumor growth that is causing jaw pain.  Although he's had some fatigue intermittently since starting treatment and during his prior treatment of carbo/taxol, he's had a whole new level of fatigue for the past week or so.  Some days he can't make it to his office job at all and on others he can work only a few hours before he needs to come home.  The fatigue can come on fast.  It's overwhelming.  Bloodwork done yesterday showed everything to be normal, we were told.  They tested his thyroid and adrenals from what I can tell along with the usual RBC, WBC, etc.  Now they want to see him on Tuesday for more bloodwork.  I don't know specifically what they will be checking as my husband took the call and doesn't ask any questions.  Have any of you had this experience of overhwelming fatigue while on yervoy and if so, how did you deal with it? Is this normal???  Are there things I should be asking the doctor on Tuesday?

      He's been in so much pain with the tumor growth and the pain meds just aren't helping.  He sleeps sitting up.  The tumors on his neck are now huge and we've been told that we just have to be patient a while longer.  I do understand that yervoy can take time to work.  I just with he would feel better while we wait.  If this fails, it's back to carbo/taxol to try to shrink them again and give yervoy more time to work. 

      We've talked to a radiation oncologist who agrees with the melanoma specialist on the course of treatment.  He reccomended that we talk to a radiation oncologist at UPMC Hillman where he goes for treatment. just to see what he says but for now thinks we should stay the course.  Our options seem so limited.

    Viewing 29 reply threads
    • Replies
        jcmp
        Participant

          Hi,

          It seems that your husband and mine have been on similar recent treatment paths.  My husband did one round of carbo/taxol last October, which significantly reduced his tumor burden.  He then switched over to Yervoy in November of last year.  He had a lot of fatigue with Yervoy, and his bloodwork was also normal.  Side effects of Yervoy are really quite different for each individual.  If you wish to exchange e-mails, let me know.  Although, I am not sure how to get you my e-mail address without posting it on here. 

          It is hard, but hang in there. 

           

          jcmp
          Participant

            Hi,

            It seems that your husband and mine have been on similar recent treatment paths.  My husband did one round of carbo/taxol last October, which significantly reduced his tumor burden.  He then switched over to Yervoy in November of last year.  He had a lot of fatigue with Yervoy, and his bloodwork was also normal.  Side effects of Yervoy are really quite different for each individual.  If you wish to exchange e-mails, let me know.  Although, I am not sure how to get you my e-mail address without posting it on here. 

            It is hard, but hang in there. 

             

              hbecker
              Participant

                If you click on someone's screen name, you are taken to his/her profile and from there you can click on the Contact tab to send a private email. I have met people that way on this board – one of the great things about it is the ability to find people who are going through something similar.

                I hope you are able to help each other – though sorry that it's necessary. Wishing you both well.

                ~Hazel

                hbecker
                Participant

                  If you click on someone's screen name, you are taken to his/her profile and from there you can click on the Contact tab to send a private email. I have met people that way on this board – one of the great things about it is the ability to find people who are going through something similar.

                  I hope you are able to help each other – though sorry that it's necessary. Wishing you both well.

                  ~Hazel

                  sjl
                  Participant

                    Thank you for this information.  I will give it a try.

                    sjl
                    Participant

                      Thank you for this information.  I will give it a try.

                      sjl
                      Participant

                        Thank you for this information.  I will give it a try.

                        jcmp
                        Participant

                          Thank you Hazel.

                          jcmp
                          Participant

                            Thank you Hazel.

                            jcmp
                            Participant

                              Thank you Hazel.

                              hbecker
                              Participant

                                If you click on someone's screen name, you are taken to his/her profile and from there you can click on the Contact tab to send a private email. I have met people that way on this board – one of the great things about it is the ability to find people who are going through something similar.

                                I hope you are able to help each other – though sorry that it's necessary. Wishing you both well.

                                ~Hazel

                                sjl
                                Participant

                                  Thanks.  I sent you an email and hope it went through ok and isn't too long for you.

                                  sjl
                                  Participant

                                    Thanks.  I sent you an email and hope it went through ok and isn't too long for you.

                                    jcmp
                                    Participant

                                      I will check my e-mail. 

                                      jcmp
                                      Participant

                                        I will check my e-mail. 

                                        jcmp
                                        Participant

                                          I will check my e-mail. 

                                          sjl
                                          Participant

                                            Thanks.  I sent you an email and hope it went through ok and isn't too long for you.

                                          jcmp
                                          Participant

                                            Hi,

                                            It seems that your husband and mine have been on similar recent treatment paths.  My husband did one round of carbo/taxol last October, which significantly reduced his tumor burden.  He then switched over to Yervoy in November of last year.  He had a lot of fatigue with Yervoy, and his bloodwork was also normal.  Side effects of Yervoy are really quite different for each individual.  If you wish to exchange e-mails, let me know.  Although, I am not sure how to get you my e-mail address without posting it on here. 

                                            It is hard, but hang in there. 

                                             

                                            Gene_S
                                            Participant

                                              Hi, I am just curious if you have changed his daily habits and his diet since he started treatment of melanoma?

                                              Thanks, Gene

                                              Gene_S
                                              Participant

                                                Hi, I am just curious if you have changed his daily habits and his diet since he started treatment of melanoma?

                                                Thanks, Gene

                                                  sjl
                                                  Participant

                                                    Things have stayed pretty much the same as usual, as much as they can be.  I'm trying to cook healthier foods but my husband continues to eat as he wishes otherwise. He likes his junk!  He handled the carbo/taxol pretty well.  At first the yervoy was ok too.  But the tumors have grown a lot since the yervoy began and we are waiting to see if it's the tumors themselves that are growing or if the yervoy is causing it.  At least that's the way we understand it.  Because of the tumor growth, he has a lot of jaw pain and can no longer sleep laying down.  Even sitting up is hard at night.  Pain meds have been adjusted wtih no real relief. Of course the pain meds may be adding to the fatigue as well.  He's got a fantasic attitude and continues to live life as normally as he can but with all the fatigue and pain it is getting hard.

                                                    sjl
                                                    Participant

                                                      Things have stayed pretty much the same as usual, as much as they can be.  I'm trying to cook healthier foods but my husband continues to eat as he wishes otherwise. He likes his junk!  He handled the carbo/taxol pretty well.  At first the yervoy was ok too.  But the tumors have grown a lot since the yervoy began and we are waiting to see if it's the tumors themselves that are growing or if the yervoy is causing it.  At least that's the way we understand it.  Because of the tumor growth, he has a lot of jaw pain and can no longer sleep laying down.  Even sitting up is hard at night.  Pain meds have been adjusted wtih no real relief. Of course the pain meds may be adding to the fatigue as well.  He's got a fantasic attitude and continues to live life as normally as he can but with all the fatigue and pain it is getting hard.

                                                      sjl
                                                      Participant

                                                        Things have stayed pretty much the same as usual, as much as they can be.  I'm trying to cook healthier foods but my husband continues to eat as he wishes otherwise. He likes his junk!  He handled the carbo/taxol pretty well.  At first the yervoy was ok too.  But the tumors have grown a lot since the yervoy began and we are waiting to see if it's the tumors themselves that are growing or if the yervoy is causing it.  At least that's the way we understand it.  Because of the tumor growth, he has a lot of jaw pain and can no longer sleep laying down.  Even sitting up is hard at night.  Pain meds have been adjusted wtih no real relief. Of course the pain meds may be adding to the fatigue as well.  He's got a fantasic attitude and continues to live life as normally as he can but with all the fatigue and pain it is getting hard.

                                                      Gene_S
                                                      Participant

                                                        Hi, I am just curious if you have changed his daily habits and his diet since he started treatment of melanoma?

                                                        Thanks, Gene

                                                        awillett1991
                                                        Participant
                                                          I finished my 4 rounds dec1, 2012. Basically spent 3 mos on the couch. Had 1 blood transfusion but it didn’t seem to help much. I am still suffering from endocrine damage and fatigue which comes and goes. Maybe they are doing further Bloodwork for thyroid, adrenals or pituitary?

                                                          I sucked it up and made it all four rounds but couldn’t do much at all, had to have help. Now am on steroids for various over active immune responses.

                                                          You can certainly do radiation during yervoy, I did, without interruption, and some thinking is that it can supercharge Yervoy to work better in some cases.

                                                          awillett1991
                                                          Participant
                                                            I finished my 4 rounds dec1, 2012. Basically spent 3 mos on the couch. Had 1 blood transfusion but it didn’t seem to help much. I am still suffering from endocrine damage and fatigue which comes and goes. Maybe they are doing further Bloodwork for thyroid, adrenals or pituitary?

                                                            I sucked it up and made it all four rounds but couldn’t do much at all, had to have help. Now am on steroids for various over active immune responses.

                                                            You can certainly do radiation during yervoy, I did, without interruption, and some thinking is that it can supercharge Yervoy to work better in some cases.

                                                            awillett1991
                                                            Participant
                                                              I finished my 4 rounds dec1, 2012. Basically spent 3 mos on the couch. Had 1 blood transfusion but it didn’t seem to help much. I am still suffering from endocrine damage and fatigue which comes and goes. Maybe they are doing further Bloodwork for thyroid, adrenals or pituitary?

                                                              I sucked it up and made it all four rounds but couldn’t do much at all, had to have help. Now am on steroids for various over active immune responses.

                                                              You can certainly do radiation during yervoy, I did, without interruption, and some thinking is that it can supercharge Yervoy to work better in some cases.

                                                              buffcody
                                                              Participant

                                                                Your husband had plenty of reason for fatigue even without the Yervoy.  Sleeping sitting up and pain meds for two.  But my own experience with Yervoy certainly had an impact on my energy levels.  I have never been a napper but around lunchtime many days I would not be able to do much except hit the bed for an hour or more. That was on top of more sleeping at night than I would ever usually do.  Some days were tired-er than others.  I found the days immediately following the infusions to be the worst. I'm almost three months away from my last infusion, but I am still getting lots of itiching and rash and, hard as it is to pin it down to one cause, continuing to feel more fatigued than usual much of the time.  My blood tests, too, except for a short while around  my fourth infusion when I was mildly anemic, have been normal.

                                                                buffcody
                                                                Participant

                                                                  Your husband had plenty of reason for fatigue even without the Yervoy.  Sleeping sitting up and pain meds for two.  But my own experience with Yervoy certainly had an impact on my energy levels.  I have never been a napper but around lunchtime many days I would not be able to do much except hit the bed for an hour or more. That was on top of more sleeping at night than I would ever usually do.  Some days were tired-er than others.  I found the days immediately following the infusions to be the worst. I'm almost three months away from my last infusion, but I am still getting lots of itiching and rash and, hard as it is to pin it down to one cause, continuing to feel more fatigued than usual much of the time.  My blood tests, too, except for a short while around  my fourth infusion when I was mildly anemic, have been normal.

                                                                    Danapaul
                                                                    Participant
                                                                      I am in the same boat, never a napper, but now all I want to do is sleep. Which is quite difficult to do at work. One day I was sitting in my chair at work and all I wanted to do was crawl in bed. Not necessarily to sleep, but just to lie down and not move.

                                                                      I also have become anemic which they say is unrelated, or just a coincidence, perhaps I was on the cusp. I wish everyone well and don’t give up.

                                                                    buffcody
                                                                    Participant

                                                                      Your husband had plenty of reason for fatigue even without the Yervoy.  Sleeping sitting up and pain meds for two.  But my own experience with Yervoy certainly had an impact on my energy levels.  I have never been a napper but around lunchtime many days I would not be able to do much except hit the bed for an hour or more. That was on top of more sleeping at night than I would ever usually do.  Some days were tired-er than others.  I found the days immediately following the infusions to be the worst. I'm almost three months away from my last infusion, but I am still getting lots of itiching and rash and, hard as it is to pin it down to one cause, continuing to feel more fatigued than usual much of the time.  My blood tests, too, except for a short while around  my fourth infusion when I was mildly anemic, have been normal.

                                                                      5374brian
                                                                      Participant

                                                                        My wife just finished her 4th treatment of Ipi and the fatigue was the worst side effect she had. She is also on pain meds for the tumor on her throat. Her experience was typically the end of the 2nd week past her infusion the fatigue lighted some. Her tumors too have grown and gone down as the treatment is attacking the tumor. She goes for her follow up scans April 17. The tumors that we can see and feel seem to always be changing in size, texture and shap since her 2nd treatment. Good luck with all that you are going through with your husband. 

                                                                        5374brian
                                                                        Participant

                                                                          My wife just finished her 4th treatment of Ipi and the fatigue was the worst side effect she had. She is also on pain meds for the tumor on her throat. Her experience was typically the end of the 2nd week past her infusion the fatigue lighted some. Her tumors too have grown and gone down as the treatment is attacking the tumor. She goes for her follow up scans April 17. The tumors that we can see and feel seem to always be changing in size, texture and shap since her 2nd treatment. Good luck with all that you are going through with your husband. 

                                                                          5374brian
                                                                          Participant

                                                                            My wife just finished her 4th treatment of Ipi and the fatigue was the worst side effect she had. She is also on pain meds for the tumor on her throat. Her experience was typically the end of the 2nd week past her infusion the fatigue lighted some. Her tumors too have grown and gone down as the treatment is attacking the tumor. She goes for her follow up scans April 17. The tumors that we can see and feel seem to always be changing in size, texture and shap since her 2nd treatment. Good luck with all that you are going through with your husband. 

                                                                            randallgford
                                                                            Participant

                                                                              My husband just had his second round of Yervoy and I see a marked increase in his fatigue. Every time I look at him

                                                                              his eyes are closed. At first on the decadron he was more energetic but after two drips, no more energy. I am assuming

                                                                              this is the Yervoy. Take care, Vicki

                                                                              randallgford
                                                                              Participant

                                                                                My husband just had his second round of Yervoy and I see a marked increase in his fatigue. Every time I look at him

                                                                                his eyes are closed. At first on the decadron he was more energetic but after two drips, no more energy. I am assuming

                                                                                this is the Yervoy. Take care, Vicki

                                                                                randallgford
                                                                                Participant

                                                                                  My husband just had his second round of Yervoy and I see a marked increase in his fatigue. Every time I look at him

                                                                                  his eyes are closed. At first on the decadron he was more energetic but after two drips, no more energy. I am assuming

                                                                                  this is the Yervoy. Take care, Vicki

                                                                                  NYKaren
                                                                                  Participant
                                                                                    For many, Yervoy side-effects really take off after the 3rd dose.
                                                                                    It sounds like your husband is right on schedule.
                                                                                    Please keep us posted.
                                                                                    Karen
                                                                                    NYKaren
                                                                                    Participant
                                                                                      For many, Yervoy side-effects really take off after the 3rd dose.
                                                                                      It sounds like your husband is right on schedule.
                                                                                      Please keep us posted.
                                                                                      Karen
                                                                                      NYKaren
                                                                                      Participant
                                                                                        For many, Yervoy side-effects really take off after the 3rd dose.
                                                                                        It sounds like your husband is right on schedule.
                                                                                        Please keep us posted.
                                                                                        Karen
                                                                                        sjl
                                                                                        Participant

                                                                                          Thanks so much to all who have responded.  At least I now know that what my husband is going through is pretty much to be expected and ehlps some wtih my own anxiety.  It helps so much to hear of other's experiences and I've learned so much from this board.

                                                                                          sjl
                                                                                          Participant

                                                                                            Thanks so much to all who have responded.  At least I now know that what my husband is going through is pretty much to be expected and ehlps some wtih my own anxiety.  It helps so much to hear of other's experiences and I've learned so much from this board.

                                                                                            sjl
                                                                                            Participant

                                                                                              Thanks so much to all who have responded.  At least I now know that what my husband is going through is pretty much to be expected and ehlps some wtih my own anxiety.  It helps so much to hear of other's experiences and I've learned so much from this board.

                                                                                              atcchris
                                                                                              Participant

                                                                                                I am in the same boat.. after the 3rd dose, marked fatigue… not really shortness of breath, but feeling like I just went up the stairs even sometimes doing mundane things or even nothing.  Thank you for posting the question and all the responses because it does let me know this is normal.  I missed 2.5 straight days of work, rested over the weekend, and finally got a good night's sleep last night and was able to come in this morning.  Still fatigued, but not debilitatingly so.  I had dry mouth really bad, so I couldn't eat very much and I ate so slowly.. (no saliva to mix the food properly) so we bought a humidifier, and a lot of different dry mouth things.. the thing that works best for me is the ACT 2 lozenges.  I also make sure whatever I eat has a lot of gravy-like substance to go with it to help out.  Eating regular meals is huge in getting strength back up.  I also had trouble sleeping, but got a sleeping pill and started getting more sleep.  Food and sleep… must have those for energy!!!!  God is so good to keep blessing me with ideas and ways to battle this beast.  I have just been praying for Him to cure me and let the YERVOY work.. as I was praying I feel I really heard Him say.. "I got this!"  Yes, He does…

                                                                                                 

                                                                                                Chris

                                                                                                atcchris
                                                                                                Participant

                                                                                                  I am in the same boat.. after the 3rd dose, marked fatigue… not really shortness of breath, but feeling like I just went up the stairs even sometimes doing mundane things or even nothing.  Thank you for posting the question and all the responses because it does let me know this is normal.  I missed 2.5 straight days of work, rested over the weekend, and finally got a good night's sleep last night and was able to come in this morning.  Still fatigued, but not debilitatingly so.  I had dry mouth really bad, so I couldn't eat very much and I ate so slowly.. (no saliva to mix the food properly) so we bought a humidifier, and a lot of different dry mouth things.. the thing that works best for me is the ACT 2 lozenges.  I also make sure whatever I eat has a lot of gravy-like substance to go with it to help out.  Eating regular meals is huge in getting strength back up.  I also had trouble sleeping, but got a sleeping pill and started getting more sleep.  Food and sleep… must have those for energy!!!!  God is so good to keep blessing me with ideas and ways to battle this beast.  I have just been praying for Him to cure me and let the YERVOY work.. as I was praying I feel I really heard Him say.. "I got this!"  Yes, He does…

                                                                                                   

                                                                                                  Chris

                                                                                                  atcchris
                                                                                                  Participant

                                                                                                    I am in the same boat.. after the 3rd dose, marked fatigue… not really shortness of breath, but feeling like I just went up the stairs even sometimes doing mundane things or even nothing.  Thank you for posting the question and all the responses because it does let me know this is normal.  I missed 2.5 straight days of work, rested over the weekend, and finally got a good night's sleep last night and was able to come in this morning.  Still fatigued, but not debilitatingly so.  I had dry mouth really bad, so I couldn't eat very much and I ate so slowly.. (no saliva to mix the food properly) so we bought a humidifier, and a lot of different dry mouth things.. the thing that works best for me is the ACT 2 lozenges.  I also make sure whatever I eat has a lot of gravy-like substance to go with it to help out.  Eating regular meals is huge in getting strength back up.  I also had trouble sleeping, but got a sleeping pill and started getting more sleep.  Food and sleep… must have those for energy!!!!  God is so good to keep blessing me with ideas and ways to battle this beast.  I have just been praying for Him to cure me and let the YERVOY work.. as I was praying I feel I really heard Him say.. "I got this!"  Yes, He does…

                                                                                                     

                                                                                                    Chris

                                                                                                    lrkg1234
                                                                                                    Participant

                                                                                                      Hi,

                                                                                                      I was just wondering how your husband is doing? 

                                                                                                      My husband just finished has last round of Yervoy on Thursday.  He sleeps tons and has throughout the entire Yervoy treatment. I'm hearing that Yervoy can be exhausting. 

                                                                                                      I know what it's like to worry if they are getting worse or if it's just the pain meds, Yervoy or what.  It does seem like the Yervoy makes people very tired.   

                                                                                                      Best wishes, Lisa

                                                                                                       

                                                                                                      lrkg1234
                                                                                                      Participant

                                                                                                        Hi,

                                                                                                        I was just wondering how your husband is doing? 

                                                                                                        My husband just finished has last round of Yervoy on Thursday.  He sleeps tons and has throughout the entire Yervoy treatment. I'm hearing that Yervoy can be exhausting. 

                                                                                                        I know what it's like to worry if they are getting worse or if it's just the pain meds, Yervoy or what.  It does seem like the Yervoy makes people very tired.   

                                                                                                        Best wishes, Lisa

                                                                                                         

                                                                                                        lrkg1234
                                                                                                        Participant

                                                                                                          Hi,

                                                                                                          I was just wondering how your husband is doing? 

                                                                                                          My husband just finished has last round of Yervoy on Thursday.  He sleeps tons and has throughout the entire Yervoy treatment. I'm hearing that Yervoy can be exhausting. 

                                                                                                          I know what it's like to worry if they are getting worse or if it's just the pain meds, Yervoy or what.  It does seem like the Yervoy makes people very tired.   

                                                                                                          Best wishes, Lisa

                                                                                                           

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