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When can Symptoms start showing on Yervoy?

Forums General Melanoma Community When can Symptoms start showing on Yervoy?

  • Post
    Kelly7
    Participant

      Hello,

       

      Hello,

       

      My brother just had his first dose of Yervoy on Wednesday and so far he feels good. I have read many posts and it seems like most people that have symptoms between dose 2 and 3. I asked my brother to ask his doctor what to look for, but his doctor told him that only 7% of people have symptoms. I feel like that number is low from reading the posts on this website. I also feel his doctor has down played treatments before(IL2). I just want my brother to be vigilant in looking for symptoms. His doctor told him that if he gets diarrhea to take imodium ad . But I'm pretty sure I read on this forum that that is a ridiculous treatment. 

       

      The hospital that he is receiving Yervoy is about an hour away, so if there was any emergency he would have to go to a local hospital. I just want them to be informed and my brother as well. He is not as keen as I am to join in and participate in these type of forums. He seems to just take whatever the doctor says as 100%.

       

      Thank you for any advise!

    Viewing 20 reply threads
    • Replies
        kylez
        Participant

           

          Hi Kelly, I hope you and your brother are doing well.

          You and your brother should retly on your doctor as your first line of information.  

          As a second line of information, the drug manaufacturer provides a booklet, "Immune-mediated Adverse Reaction Management Guide" available here: http://www.yervoy.com/hcp/rems.aspx

          As a third line of information… NYKaren, another forum participant here, noted that when she talked to her doctor, Dr. Wolchuk at Sloan Kettering, one of the pioneers in the original Yervoy clinical trials, he said that not all doctors are yet consistent and on top of all aspects of the managing the immune-related side effects. 

          If your doc didn't read your brother the riot act about being extremely cautious about side effects, and notifying him immediately if there were any changes, particuarly bowel-related, then that would be a different appraoch than my doctors took. I even kept a journal of my "#2s" for 4 months.

          – Kyle

          kylez
          Participant

             

            Hi Kelly, I hope you and your brother are doing well.

            You and your brother should retly on your doctor as your first line of information.  

            As a second line of information, the drug manaufacturer provides a booklet, "Immune-mediated Adverse Reaction Management Guide" available here: http://www.yervoy.com/hcp/rems.aspx

            As a third line of information… NYKaren, another forum participant here, noted that when she talked to her doctor, Dr. Wolchuk at Sloan Kettering, one of the pioneers in the original Yervoy clinical trials, he said that not all doctors are yet consistent and on top of all aspects of the managing the immune-related side effects. 

            If your doc didn't read your brother the riot act about being extremely cautious about side effects, and notifying him immediately if there were any changes, particuarly bowel-related, then that would be a different appraoch than my doctors took. I even kept a journal of my "#2s" for 4 months.

            – Kyle

              kylez
              Participant

                P.S. I once flew off at the mouth about Immodium on this Forum, but it turns out I was wrong and was speaking out of ignorance (as I had never had these symptoms, related to colitis). A number of other folks on this Forum, who had, were started by their docs on Immodium, but as I understand it the escalation to steroids should be quick if the diarrhea does not resolve quickly… but I don't want to make the same mistake again by saying things out of place/ that I don't really know about!

                kylez
                Participant

                  P.S. I once flew off at the mouth about Immodium on this Forum, but it turns out I was wrong and was speaking out of ignorance (as I had never had these symptoms, related to colitis). A number of other folks on this Forum, who had, were started by their docs on Immodium, but as I understand it the escalation to steroids should be quick if the diarrhea does not resolve quickly… but I don't want to make the same mistake again by saying things out of place/ that I don't really know about!

                  kylez
                  Participant

                    P.S. I once flew off at the mouth about Immodium on this Forum, but it turns out I was wrong and was speaking out of ignorance (as I had never had these symptoms, related to colitis). A number of other folks on this Forum, who had, were started by their docs on Immodium, but as I understand it the escalation to steroids should be quick if the diarrhea does not resolve quickly… but I don't want to make the same mistake again by saying things out of place/ that I don't really know about!

                  kylez
                  Participant

                     

                    Hi Kelly, I hope you and your brother are doing well.

                    You and your brother should retly on your doctor as your first line of information.  

                    As a second line of information, the drug manaufacturer provides a booklet, "Immune-mediated Adverse Reaction Management Guide" available here: http://www.yervoy.com/hcp/rems.aspx

                    As a third line of information… NYKaren, another forum participant here, noted that when she talked to her doctor, Dr. Wolchuk at Sloan Kettering, one of the pioneers in the original Yervoy clinical trials, he said that not all doctors are yet consistent and on top of all aspects of the managing the immune-related side effects. 

                    If your doc didn't read your brother the riot act about being extremely cautious about side effects, and notifying him immediately if there were any changes, particuarly bowel-related, then that would be a different appraoch than my doctors took. I even kept a journal of my "#2s" for 4 months.

                    – Kyle

                    yoopergirl
                    Participant

                      I think that percentage is too low, I started with the itching after my second round and after the third with the bowel issues and was put in the hospital for 5 days and put on steriods. No 4th infusion for me. Is your doctor a specialist in Melanoma? I got a second opinion from a Cancer center that has 2 melanoma doctors there and am going with them. I am 6 hours away from them but my local hospital did all they could for me and more and kept in contact with my oncologist. Now when I get more bowel movements I just take some immodunem. I wish your brother well and hope for no side effects just happen to get more then normal. He should have a card with him about the Yervoy that he should keep in his wallet, did his doctor give him one? 

                      yoopergirl
                      Participant

                        I think that percentage is too low, I started with the itching after my second round and after the third with the bowel issues and was put in the hospital for 5 days and put on steriods. No 4th infusion for me. Is your doctor a specialist in Melanoma? I got a second opinion from a Cancer center that has 2 melanoma doctors there and am going with them. I am 6 hours away from them but my local hospital did all they could for me and more and kept in contact with my oncologist. Now when I get more bowel movements I just take some immodunem. I wish your brother well and hope for no side effects just happen to get more then normal. He should have a card with him about the Yervoy that he should keep in his wallet, did his doctor give him one? 

                        yoopergirl
                        Participant

                          I think that percentage is too low, I started with the itching after my second round and after the third with the bowel issues and was put in the hospital for 5 days and put on steriods. No 4th infusion for me. Is your doctor a specialist in Melanoma? I got a second opinion from a Cancer center that has 2 melanoma doctors there and am going with them. I am 6 hours away from them but my local hospital did all they could for me and more and kept in contact with my oncologist. Now when I get more bowel movements I just take some immodunem. I wish your brother well and hope for no side effects just happen to get more then normal. He should have a card with him about the Yervoy that he should keep in his wallet, did his doctor give him one? 

                            Kelly7
                            Participant

                              Yes, he did get the card.

                              What did you do for the itching? Is it similar to the itching when doing IL2? His doctor is a melanoma specialist, however he did only get one opinion. When you had bowel issues was it sudden and quick that that ended up in the hospital? Or was it one bout with diarrhea, then you were ok, then another bout, then hospital? 

                               

                              Thank you for the info!

                              Kelly7
                              Participant

                                Yes, he did get the card.

                                What did you do for the itching? Is it similar to the itching when doing IL2? His doctor is a melanoma specialist, however he did only get one opinion. When you had bowel issues was it sudden and quick that that ended up in the hospital? Or was it one bout with diarrhea, then you were ok, then another bout, then hospital? 

                                 

                                Thank you for the info!

                                yoopergirl
                                Participant

                                  I use over the counter medication for the itching. I had a fever of 103 and severe diarrhea like uncontrolable. So they put me on the steriods. It finally stopped 2 days after being home.

                                  yoopergirl
                                  Participant

                                    I use over the counter medication for the itching. I had a fever of 103 and severe diarrhea like uncontrolable. So they put me on the steriods. It finally stopped 2 days after being home.

                                    yoopergirl
                                    Participant

                                      I use over the counter medication for the itching. I had a fever of 103 and severe diarrhea like uncontrolable. So they put me on the steriods. It finally stopped 2 days after being home.

                                      Kelly7
                                      Participant

                                        Yes, he did get the card.

                                        What did you do for the itching? Is it similar to the itching when doing IL2? His doctor is a melanoma specialist, however he did only get one opinion. When you had bowel issues was it sudden and quick that that ended up in the hospital? Or was it one bout with diarrhea, then you were ok, then another bout, then hospital? 

                                         

                                        Thank you for the info!

                                      Roxy1453
                                      Participant
                                        I started itching shortly before my second infusion. I also started having diarrhea before my second. Three days after my second I was in the hospital with colitis I was on steroids until the end of March. Every time we tried to back off the meds it would come back. I also had flaking skin with the itching. I have been using auquaphilic lotion and that has helped a lot. I took benadryl to stop the itching. I have not been able to have the last two infusions. I am having radiation now on a spot behind my knee. I don’t know yet if I will be able to have the last two treatments.
                                        Stay on top of everything, and I hope it all works out for your brother.

                                        Prayers,

                                        Nancy,

                                        Roxy1453
                                        Participant
                                          I started itching shortly before my second infusion. I also started having diarrhea before my second. Three days after my second I was in the hospital with colitis I was on steroids until the end of March. Every time we tried to back off the meds it would come back. I also had flaking skin with the itching. I have been using auquaphilic lotion and that has helped a lot. I took benadryl to stop the itching. I have not been able to have the last two infusions. I am having radiation now on a spot behind my knee. I don’t know yet if I will be able to have the last two treatments.
                                          Stay on top of everything, and I hope it all works out for your brother.

                                          Prayers,

                                          Nancy,

                                          Roxy1453
                                          Participant
                                            I started itching shortly before my second infusion. I also started having diarrhea before my second. Three days after my second I was in the hospital with colitis I was on steroids until the end of March. Every time we tried to back off the meds it would come back. I also had flaking skin with the itching. I have been using auquaphilic lotion and that has helped a lot. I took benadryl to stop the itching. I have not been able to have the last two infusions. I am having radiation now on a spot behind my knee. I don’t know yet if I will be able to have the last two treatments.
                                            Stay on top of everything, and I hope it all works out for your brother.

                                            Prayers,

                                            Nancy,

                                              NYKaren
                                              Participant

                                                Hello Kelly,

                                                I am presently between my second and third doses of Yervoy reinduction, and I've also been through IL-2.  As Kyle mentioned, my doctor is pretty well-versed when it comes to Yervoy side-effects, and i was adament on this board about advocating his treatment.  Since then, I've learned that even among melanoma specialists there is a slight varience in treatments of diarrhea, which is a serious side effect and can easily turn to colitis if not managed properly.  Some oncs prescribe systemic steroids, some locally-acting steriods, but in any event, I'm surprised your doctor was so offhand about Immodium, because if it is Yervoy-induced, Immodium doesn't even work for long, if at all. 

                                                Both times on Yervoy, I've had to report any changes in bowel movements.  Last time I developed diarrhea around the 2nd dose, this time it was about a week later.  At first I thought it was because of the change in my diet due to the Passover holiday, so I took Imodiuum.  When that didn't work, I called my onc.  He had me start Endocort EC (Budesonine), which is what I took last year too.  It worked like magic by the seond dose. (And they prescribe a bland diet too.) My doc likes Endocort as first line treatment for Ipi-induced diahhrea; some other doctors use systemic steroids.  The reason my doc likes Endocort is that it's not systemic, it only works in the gut and the patient can continue Yervoy infusions.  If someone's on more 7.5 mg of systemic steroids, the infusions have to be discontinued until the dose can be tapered off.  (That number is found on Yervoy.com.)  Last time I was on Endocort for the duration for my treatment; I believe I will be this time too. 

                                                This diarhhea is completely different from what I had on IL2.  On IL-2 they treated it with Lomotil, and even codeine–anything to stop it!  

                                                ANYWAY, your brother's doc should be all over him to report symptoms as soon as they happen.  Also, as was said previously, I believe he doc is under-representing the percentage of people who get side-effects.  Maybe the life-threatening percentage is 7%, but I believe that mild to moderate is at least 25%.    Also, your brother should have been given a wallet card, so that if he has to go to an ER, information on Yervoy itself, its side-effects and how treat them are readily available.  I have found that outside of the Melanoma field, most docs know nothing about Yervoy.

                                                Sorry this is so long, but I get so upset that some Yervoy patients suffer much more than they have to because of uneducated doctors. 

                                                hope this helps,

                                                karen

                                                NYKaren
                                                Participant

                                                  Hello Kelly,

                                                  I am presently between my second and third doses of Yervoy reinduction, and I've also been through IL-2.  As Kyle mentioned, my doctor is pretty well-versed when it comes to Yervoy side-effects, and i was adament on this board about advocating his treatment.  Since then, I've learned that even among melanoma specialists there is a slight varience in treatments of diarrhea, which is a serious side effect and can easily turn to colitis if not managed properly.  Some oncs prescribe systemic steroids, some locally-acting steriods, but in any event, I'm surprised your doctor was so offhand about Immodium, because if it is Yervoy-induced, Immodium doesn't even work for long, if at all. 

                                                  Both times on Yervoy, I've had to report any changes in bowel movements.  Last time I developed diarrhea around the 2nd dose, this time it was about a week later.  At first I thought it was because of the change in my diet due to the Passover holiday, so I took Imodiuum.  When that didn't work, I called my onc.  He had me start Endocort EC (Budesonine), which is what I took last year too.  It worked like magic by the seond dose. (And they prescribe a bland diet too.) My doc likes Endocort as first line treatment for Ipi-induced diahhrea; some other doctors use systemic steroids.  The reason my doc likes Endocort is that it's not systemic, it only works in the gut and the patient can continue Yervoy infusions.  If someone's on more 7.5 mg of systemic steroids, the infusions have to be discontinued until the dose can be tapered off.  (That number is found on Yervoy.com.)  Last time I was on Endocort for the duration for my treatment; I believe I will be this time too. 

                                                  This diarhhea is completely different from what I had on IL2.  On IL-2 they treated it with Lomotil, and even codeine–anything to stop it!  

                                                  ANYWAY, your brother's doc should be all over him to report symptoms as soon as they happen.  Also, as was said previously, I believe he doc is under-representing the percentage of people who get side-effects.  Maybe the life-threatening percentage is 7%, but I believe that mild to moderate is at least 25%.    Also, your brother should have been given a wallet card, so that if he has to go to an ER, information on Yervoy itself, its side-effects and how treat them are readily available.  I have found that outside of the Melanoma field, most docs know nothing about Yervoy.

                                                  Sorry this is so long, but I get so upset that some Yervoy patients suffer much more than they have to because of uneducated doctors. 

                                                  hope this helps,

                                                  karen

                                                  Kelly7
                                                  Participant

                                                    Thank you for all the advice!

                                                     

                                                    I really appreciate it. Knowing that there is such an amazing community out there of supporters makes this whole ordeal a little easier.

                                                    Kelly7
                                                    Participant

                                                      Thank you for all the advice!

                                                       

                                                      I really appreciate it. Knowing that there is such an amazing community out there of supporters makes this whole ordeal a little easier.

                                                      Kelly7
                                                      Participant

                                                        Thank you for all the advice!

                                                         

                                                        I really appreciate it. Knowing that there is such an amazing community out there of supporters makes this whole ordeal a little easier.

                                                        NYKaren
                                                        Participant

                                                          Hello Kelly,

                                                          I am presently between my second and third doses of Yervoy reinduction, and I've also been through IL-2.  As Kyle mentioned, my doctor is pretty well-versed when it comes to Yervoy side-effects, and i was adament on this board about advocating his treatment.  Since then, I've learned that even among melanoma specialists there is a slight varience in treatments of diarrhea, which is a serious side effect and can easily turn to colitis if not managed properly.  Some oncs prescribe systemic steroids, some locally-acting steriods, but in any event, I'm surprised your doctor was so offhand about Immodium, because if it is Yervoy-induced, Immodium doesn't even work for long, if at all. 

                                                          Both times on Yervoy, I've had to report any changes in bowel movements.  Last time I developed diarrhea around the 2nd dose, this time it was about a week later.  At first I thought it was because of the change in my diet due to the Passover holiday, so I took Imodiuum.  When that didn't work, I called my onc.  He had me start Endocort EC (Budesonine), which is what I took last year too.  It worked like magic by the seond dose. (And they prescribe a bland diet too.) My doc likes Endocort as first line treatment for Ipi-induced diahhrea; some other doctors use systemic steroids.  The reason my doc likes Endocort is that it's not systemic, it only works in the gut and the patient can continue Yervoy infusions.  If someone's on more 7.5 mg of systemic steroids, the infusions have to be discontinued until the dose can be tapered off.  (That number is found on Yervoy.com.)  Last time I was on Endocort for the duration for my treatment; I believe I will be this time too. 

                                                          This diarhhea is completely different from what I had on IL2.  On IL-2 they treated it with Lomotil, and even codeine–anything to stop it!  

                                                          ANYWAY, your brother's doc should be all over him to report symptoms as soon as they happen.  Also, as was said previously, I believe he doc is under-representing the percentage of people who get side-effects.  Maybe the life-threatening percentage is 7%, but I believe that mild to moderate is at least 25%.    Also, your brother should have been given a wallet card, so that if he has to go to an ER, information on Yervoy itself, its side-effects and how treat them are readily available.  I have found that outside of the Melanoma field, most docs know nothing about Yervoy.

                                                          Sorry this is so long, but I get so upset that some Yervoy patients suffer much more than they have to because of uneducated doctors. 

                                                          hope this helps,

                                                          karen

                                                        mbaelaporte
                                                        Participant

                                                          Yervoy

                                                          I received my 3rd infusion one week ago and the effects : hair returning in spades after loss w / B raf

                                                             dramatic reduction if not elimination ( no scans ) of "impressive" tumors – mine stick out in neck & breast 

                                                             skin has become very itchy

                                                          I'm a needle phobic and pretty hard to find if there is a needle around but coupled w/ efficacy and our entertaining our vices ( my wife has never eaten so many Lorna Doones nor I some "organic chocolate" Oreos ) I am actually looking forward to infusion sessions

                                                          and I'm going to ask for my Yervoy card and to note my Doc is exceedingly responsive

                                                          I hope Yervoy is your good friend

                                                          mbaelaporte
                                                          Participant

                                                            Yervoy

                                                            I received my 3rd infusion one week ago and the effects : hair returning in spades after loss w / B raf

                                                               dramatic reduction if not elimination ( no scans ) of "impressive" tumors – mine stick out in neck & breast 

                                                               skin has become very itchy

                                                            I'm a needle phobic and pretty hard to find if there is a needle around but coupled w/ efficacy and our entertaining our vices ( my wife has never eaten so many Lorna Doones nor I some "organic chocolate" Oreos ) I am actually looking forward to infusion sessions

                                                            and I'm going to ask for my Yervoy card and to note my Doc is exceedingly responsive

                                                            I hope Yervoy is your good friend

                                                            mbaelaporte
                                                            Participant

                                                              Yervoy

                                                              I received my 3rd infusion one week ago and the effects : hair returning in spades after loss w / B raf

                                                                 dramatic reduction if not elimination ( no scans ) of "impressive" tumors – mine stick out in neck & breast 

                                                                 skin has become very itchy

                                                              I'm a needle phobic and pretty hard to find if there is a needle around but coupled w/ efficacy and our entertaining our vices ( my wife has never eaten so many Lorna Doones nor I some "organic chocolate" Oreos ) I am actually looking forward to infusion sessions

                                                              and I'm going to ask for my Yervoy card and to note my Doc is exceedingly responsive

                                                              I hope Yervoy is your good friend

                                                              gabsound
                                                              Participant
                                                                I just wanted to chime in as someone who has completed 4 rounds of Yervoy and only minimal symptoms. I had a couple episodes of diarrhea, but in hind site I’m sure it was the Robertos burrito I ate each time. My only other symptom has been some itching. I use a cortisone cream locally to the areas of itching. I also had some itching of they eyes and used an eye drop with a steroid in it (only 1 drop per eye maybe twice). My oncologist had me fill a script for a medrol dose pak to have on hand from before the 1st round. I was instructed to report any symptoms particularly related to bowels.

                                                                Even with minimal symptoms, my last scan showed significant change for the better. My dr said he has seen Yervoy work even with no symptoms at all. But clearly if you are having symptoms your immune system is really revved up.

                                                                Good luck to all.

                                                                Julie in Las Vegas

                                                                gabsound
                                                                Participant
                                                                  I just wanted to chime in as someone who has completed 4 rounds of Yervoy and only minimal symptoms. I had a couple episodes of diarrhea, but in hind site I’m sure it was the Robertos burrito I ate each time. My only other symptom has been some itching. I use a cortisone cream locally to the areas of itching. I also had some itching of they eyes and used an eye drop with a steroid in it (only 1 drop per eye maybe twice). My oncologist had me fill a script for a medrol dose pak to have on hand from before the 1st round. I was instructed to report any symptoms particularly related to bowels.

                                                                  Even with minimal symptoms, my last scan showed significant change for the better. My dr said he has seen Yervoy work even with no symptoms at all. But clearly if you are having symptoms your immune system is really revved up.

                                                                  Good luck to all.

                                                                  Julie in Las Vegas

                                                                    Kelly7
                                                                    Participant

                                                                      Just to update you on my brother. He had his first dose of Yervoy on April 11th and by April 15th has had a fever and he wakes up with chills and sweats in the middle of the night. All side effects are manageable, but just wanted to say that he felt the side effects a lot sooner than we had expected.

                                                                      On a side note, his hair on his head has stopped growing since his first round of IL2. Anyone else?

                                                                       

                                                                       

                                                                      Kelly7
                                                                      Participant

                                                                        Just to update you on my brother. He had his first dose of Yervoy on April 11th and by April 15th has had a fever and he wakes up with chills and sweats in the middle of the night. All side effects are manageable, but just wanted to say that he felt the side effects a lot sooner than we had expected.

                                                                        On a side note, his hair on his head has stopped growing since his first round of IL2. Anyone else?

                                                                         

                                                                         

                                                                        Kelly7
                                                                        Participant

                                                                          Just to update you on my brother. He had his first dose of Yervoy on April 11th and by April 15th has had a fever and he wakes up with chills and sweats in the middle of the night. All side effects are manageable, but just wanted to say that he felt the side effects a lot sooner than we had expected.

                                                                          On a side note, his hair on his head has stopped growing since his first round of IL2. Anyone else?

                                                                           

                                                                           

                                                                        gabsound
                                                                        Participant
                                                                          I just wanted to chime in as someone who has completed 4 rounds of Yervoy and only minimal symptoms. I had a couple episodes of diarrhea, but in hind site I’m sure it was the Robertos burrito I ate each time. My only other symptom has been some itching. I use a cortisone cream locally to the areas of itching. I also had some itching of they eyes and used an eye drop with a steroid in it (only 1 drop per eye maybe twice). My oncologist had me fill a script for a medrol dose pak to have on hand from before the 1st round. I was instructed to report any symptoms particularly related to bowels.

                                                                          Even with minimal symptoms, my last scan showed significant change for the better. My dr said he has seen Yervoy work even with no symptoms at all. But clearly if you are having symptoms your immune system is really revved up.

                                                                          Good luck to all.

                                                                          Julie in Las Vegas

                                                                          LuckyMan51
                                                                          Participant
                                                                            Hi, I just finished my 4th Yervoy treatment last Thursday. I did have a bit of flu like symptoms after the 2nd and 3rd treatment and some itching but used creme to minimize that. My Dr was very concerned about diarrhea but away from some loosening there was no noticeable increase in the frequency. I asked my Dr for a prescription to carry in my wallet in case it came on. I believe they worry as frequent diarrhea can lead to perforation of the intestine. Perhaps something stronger than immodium should be take if diarrhea kicks in. Check your Dr on that. Maybe I was lucky but away from the mild symptoms and easily controlled itching There were no other issues. I had a brain MRI this past Tuesday and the tumor ( orig 1.5-1.6 or so) is measured as beginning to shrink so needles to say I am cautiously ecstatic. I am not a Dr but the fact that he feels something but not something extreme might signal that the Yervoy is starting to do its job. If your brother has any rumors that could be radiated via radio static surgery look into the abscopal effect that a small 20% of combo Yervoy/radiation patients have seen. Dr Jed Wolchuk from Memirial Sloan Kettering has a paper on the topic on his web site. You are a good sister. Best of luck to your brother.
                                                                            LuckyMan51
                                                                            Participant
                                                                              Hi, I just finished my 4th Yervoy treatment last Thursday. I did have a bit of flu like symptoms after the 2nd and 3rd treatment and some itching but used creme to minimize that. My Dr was very concerned about diarrhea but away from some loosening there was no noticeable increase in the frequency. I asked my Dr for a prescription to carry in my wallet in case it came on. I believe they worry as frequent diarrhea can lead to perforation of the intestine. Perhaps something stronger than immodium should be take if diarrhea kicks in. Check your Dr on that. Maybe I was lucky but away from the mild symptoms and easily controlled itching There were no other issues. I had a brain MRI this past Tuesday and the tumor ( orig 1.5-1.6 or so) is measured as beginning to shrink so needles to say I am cautiously ecstatic. I am not a Dr but the fact that he feels something but not something extreme might signal that the Yervoy is starting to do its job. If your brother has any rumors that could be radiated via radio static surgery look into the abscopal effect that a small 20% of combo Yervoy/radiation patients have seen. Dr Jed Wolchuk from Memirial Sloan Kettering has a paper on the topic on his web site. You are a good sister. Best of luck to your brother.
                                                                              LuckyMan51
                                                                              Participant
                                                                                Hi, I just finished my 4th Yervoy treatment last Thursday. I did have a bit of flu like symptoms after the 2nd and 3rd treatment and some itching but used creme to minimize that. My Dr was very concerned about diarrhea but away from some loosening there was no noticeable increase in the frequency. I asked my Dr for a prescription to carry in my wallet in case it came on. I believe they worry as frequent diarrhea can lead to perforation of the intestine. Perhaps something stronger than immodium should be take if diarrhea kicks in. Check your Dr on that. Maybe I was lucky but away from the mild symptoms and easily controlled itching There were no other issues. I had a brain MRI this past Tuesday and the tumor ( orig 1.5-1.6 or so) is measured as beginning to shrink so needles to say I am cautiously ecstatic. I am not a Dr but the fact that he feels something but not something extreme might signal that the Yervoy is starting to do its job. If your brother has any rumors that could be radiated via radio static surgery look into the abscopal effect that a small 20% of combo Yervoy/radiation patients have seen. Dr Jed Wolchuk from Memirial Sloan Kettering has a paper on the topic on his web site. You are a good sister. Best of luck to your brother.
                                                                                mhensley1
                                                                                Participant
                                                                                  My husband just finished his second dose of Yervoy. He has minor symptoms, lite irritability, now itching a lot more. One little open small scratch, very numb feet and pain in his bones. However, the side affects are minimal compared to the IL-2 so he is happy. His last scan showed 5 tumors with one bone mets measuring 16 suv. The others are one on each side of his upper back, one in his clavicle, one on the AP window and the largest in his hip bone.

                                                                                  We are praying for some shrinkage and to be honest we have no idea what to expect. He was diagnosed last year April 16. He has had two surgeries but the tumors kept growing and spreading. He did 6 bio-chemos but his body could not tolerate the chemo and there was growth no slowing of the tumors.

                                                                                  What keeps both of us strong is our faith in God and I feel so sad when I see some of the newer people find out about their cancer and how scares they must feel. There are some difficult days for both of us for different reasons our children being the greatest. My husbands first wife died of the same cancer leaving him with four children and now they are all 15 years older facing this with their father. We now have seven children. Keep fighting and trusting!

                                                                                  mhensley1
                                                                                  Participant
                                                                                    My husband just finished his second dose of Yervoy. He has minor symptoms, lite irritability, now itching a lot more. One little open small scratch, very numb feet and pain in his bones. However, the side affects are minimal compared to the IL-2 so he is happy. His last scan showed 5 tumors with one bone mets measuring 16 suv. The others are one on each side of his upper back, one in his clavicle, one on the AP window and the largest in his hip bone.

                                                                                    We are praying for some shrinkage and to be honest we have no idea what to expect. He was diagnosed last year April 16. He has had two surgeries but the tumors kept growing and spreading. He did 6 bio-chemos but his body could not tolerate the chemo and there was growth no slowing of the tumors.

                                                                                    What keeps both of us strong is our faith in God and I feel so sad when I see some of the newer people find out about their cancer and how scares they must feel. There are some difficult days for both of us for different reasons our children being the greatest. My husbands first wife died of the same cancer leaving him with four children and now they are all 15 years older facing this with their father. We now have seven children. Keep fighting and trusting!

                                                                                    mhensley1
                                                                                    Participant
                                                                                      My husband just finished his second dose of Yervoy. He has minor symptoms, lite irritability, now itching a lot more. One little open small scratch, very numb feet and pain in his bones. However, the side affects are minimal compared to the IL-2 so he is happy. His last scan showed 5 tumors with one bone mets measuring 16 suv. The others are one on each side of his upper back, one in his clavicle, one on the AP window and the largest in his hip bone.

                                                                                      We are praying for some shrinkage and to be honest we have no idea what to expect. He was diagnosed last year April 16. He has had two surgeries but the tumors kept growing and spreading. He did 6 bio-chemos but his body could not tolerate the chemo and there was growth no slowing of the tumors.

                                                                                      What keeps both of us strong is our faith in God and I feel so sad when I see some of the newer people find out about their cancer and how scares they must feel. There are some difficult days for both of us for different reasons our children being the greatest. My husbands first wife died of the same cancer leaving him with four children and now they are all 15 years older facing this with their father. We now have seven children. Keep fighting and trusting!

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