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.

First time Ippi (Yervoy) treatment Thursday. What to expect?

Forums Cutaneous Melanoma Community First time Ippi (Yervoy) treatment Thursday. What to expect?

  • Post
    Maxximom
    Participant

      Hello to all of you. I am a new member here and posted about 10 days ago for the first time. I am newly diagnosed with Melanoma in my left lung. I have never had any skin lesions of any kind. I had a CT scan for a totally different reasson and a mass was discovered in my lung by chance. At first it was thought to possibly be lung cancer and I had a core biopsy done and the pathology report came back as Melanoma. Since the lung is almost never the primary source..and all skin checks are clear.. they have no idea where the primary may have come from.

      Hello to all of you. I am a new member here and posted about 10 days ago for the first time. I am newly diagnosed with Melanoma in my left lung. I have never had any skin lesions of any kind. I had a CT scan for a totally different reasson and a mass was discovered in my lung by chance. At first it was thought to possibly be lung cancer and I had a core biopsy done and the pathology report came back as Melanoma. Since the lung is almost never the primary source..and all skin checks are clear.. they have no idea where the primary may have come from. I am seeing a Melanoma specialist at the James Cancer Center in Columbus OH. I have been told surgery is not a option. I am still waiting for my B-Raf test to come back..but Dr Kendra feels stronly that the Ippi is my best option. What can I expect at this first treatment? When do side effects usually kick in at the first infusion.?.or will the side effect get  greater with each treatment…or is it a really an individual thing? I am sure that some of my questions will be answered on Thursday..but I would like to hear from you..; who have been there..done that..Friday is my 81st Birthday.. I never expected to have to face this at my age..but I have always been a fighter and I want to kick A$$ and be around for a while and see my Grandkids grow up.Thanks for any help. Keep Fighting!

      Joan

    Viewing 14 reply threads
    • Replies
        jmmm
        Participant
          My husband did Yervoy last summer. He had no side effects except some stomach rumblings. The side effects don’t typically start right away, but if you get some “bigger” reactions, they should start up within the first dose or so. It is cummulitive….the more medicine you get (aka dose 2, 3, and/or 4 the worse the reaction. Many times they’ll have to wait on treatment while the side effect settles down. They’ll give you a huge list of side effects (which can scare the you-know-what out of you:)). They should give you a list of reactions to call on’ go to the ER on, etc. It’s s scary medicine, with some real and scary reactions, but it can work wonders. My husband is alive because of Yervoy (he had an inoperable tumor next to his heart that was completely gone after Yervoy). FYI…he may be starting a Reinduction of Yervoy within the next month of so.
          Hang in ther. Just make sure to call at the fist moment an GI issues come up. It can get out of control really fast.
            Maxximom
            Participant

              Thank you Jmmm for your reply.. I am so glad that the Ippi worked so well for your Husband. Dr Kendra did warn me to call at the first sign of any GI problems and to keep Immodium on hand at all times. Hopefully I will be fortunate enough to get through the treatments with a minimum of problems and I will get the same wonderful results that your Husband had.

              Joan

              Maxximom
              Participant

                Thank you Jmmm for your reply.. I am so glad that the Ippi worked so well for your Husband. Dr Kendra did warn me to call at the first sign of any GI problems and to keep Immodium on hand at all times. Hopefully I will be fortunate enough to get through the treatments with a minimum of problems and I will get the same wonderful results that your Husband had.

                Joan

                Maxximom
                Participant

                  Thank you Jmmm for your reply.. I am so glad that the Ippi worked so well for your Husband. Dr Kendra did warn me to call at the first sign of any GI problems and to keep Immodium on hand at all times. Hopefully I will be fortunate enough to get through the treatments with a minimum of problems and I will get the same wonderful results that your Husband had.

                  Joan

                jmmm
                Participant
                  My husband did Yervoy last summer. He had no side effects except some stomach rumblings. The side effects don’t typically start right away, but if you get some “bigger” reactions, they should start up within the first dose or so. It is cummulitive….the more medicine you get (aka dose 2, 3, and/or 4 the worse the reaction. Many times they’ll have to wait on treatment while the side effect settles down. They’ll give you a huge list of side effects (which can scare the you-know-what out of you:)). They should give you a list of reactions to call on’ go to the ER on, etc. It’s s scary medicine, with some real and scary reactions, but it can work wonders. My husband is alive because of Yervoy (he had an inoperable tumor next to his heart that was completely gone after Yervoy). FYI…he may be starting a Reinduction of Yervoy within the next month of so.
                  Hang in ther. Just make sure to call at the fist moment an GI issues come up. It can get out of control really fast.
                  jmmm
                  Participant
                    My husband did Yervoy last summer. He had no side effects except some stomach rumblings. The side effects don’t typically start right away, but if you get some “bigger” reactions, they should start up within the first dose or so. It is cummulitive….the more medicine you get (aka dose 2, 3, and/or 4 the worse the reaction. Many times they’ll have to wait on treatment while the side effect settles down. They’ll give you a huge list of side effects (which can scare the you-know-what out of you:)). They should give you a list of reactions to call on’ go to the ER on, etc. It’s s scary medicine, with some real and scary reactions, but it can work wonders. My husband is alive because of Yervoy (he had an inoperable tumor next to his heart that was completely gone after Yervoy). FYI…he may be starting a Reinduction of Yervoy within the next month of so.
                    Hang in ther. Just make sure to call at the fist moment an GI issues come up. It can get out of control really fast.
                    Gene_S
                    Participant

                      Hello Joan,

                      My husband began Ipi in March 2011 and he is still on maintenance doses every 12 weeks after the initial 4 doses every 3 weeks.

                      As you mentioned every individual is different, but he really had and still has what they call the Ipi itch and sometimes he does get a rash.  He has tolerated this medication very well and is one of the ones that Ipi has worked for and reduced lesion size and some are gone completely.  He had an inoperable lesion on his head by the spine and if they did surgery it might have left him quadraplegic.  It had also been found in the liver and the lungs.  The ones in the liver have shrunk greatly and the lungs might be totally gone as well.  If you want to read more about his journey check out his profile.

                      We lead a pretty normal life on Ipi as it hasn't gotten him down to much.  Sometimes he has a little fatigue from it but a little extra rest seems to help that.

                      Good luck with your treatments. 

                      Judy (loving wife and caregiver of Gene Stage IV)

                        Maxximom
                        Participant

                          Judy.. thank you so much for your reply..I am so glad that Gene has responded so well to his Ipi treatment. I did read his profile.. it has been quite a journey that you two have been on. The Ipi itch is a small price to pay for such wonderful results. I am really good at getting extra rest if need be..as I am retired and have no responsibilites (other than baby sitting which my 5 and 6 year old Grandkids which I adore doing ) I am glad that you are able to live a realatively normal life..that is wonderful!

                          Joan

                          Maxximom
                          Participant

                            Judy.. thank you so much for your reply..I am so glad that Gene has responded so well to his Ipi treatment. I did read his profile.. it has been quite a journey that you two have been on. The Ipi itch is a small price to pay for such wonderful results. I am really good at getting extra rest if need be..as I am retired and have no responsibilites (other than baby sitting which my 5 and 6 year old Grandkids which I adore doing ) I am glad that you are able to live a realatively normal life..that is wonderful!

                            Joan

                            Maxximom
                            Participant

                              Judy.. thank you so much for your reply..I am so glad that Gene has responded so well to his Ipi treatment. I did read his profile.. it has been quite a journey that you two have been on. The Ipi itch is a small price to pay for such wonderful results. I am really good at getting extra rest if need be..as I am retired and have no responsibilites (other than baby sitting which my 5 and 6 year old Grandkids which I adore doing ) I am glad that you are able to live a realatively normal life..that is wonderful!

                              Joan

                            Gene_S
                            Participant

                              Hello Joan,

                              My husband began Ipi in March 2011 and he is still on maintenance doses every 12 weeks after the initial 4 doses every 3 weeks.

                              As you mentioned every individual is different, but he really had and still has what they call the Ipi itch and sometimes he does get a rash.  He has tolerated this medication very well and is one of the ones that Ipi has worked for and reduced lesion size and some are gone completely.  He had an inoperable lesion on his head by the spine and if they did surgery it might have left him quadraplegic.  It had also been found in the liver and the lungs.  The ones in the liver have shrunk greatly and the lungs might be totally gone as well.  If you want to read more about his journey check out his profile.

                              We lead a pretty normal life on Ipi as it hasn't gotten him down to much.  Sometimes he has a little fatigue from it but a little extra rest seems to help that.

                              Good luck with your treatments. 

                              Judy (loving wife and caregiver of Gene Stage IV)

                              Gene_S
                              Participant

                                Hello Joan,

                                My husband began Ipi in March 2011 and he is still on maintenance doses every 12 weeks after the initial 4 doses every 3 weeks.

                                As you mentioned every individual is different, but he really had and still has what they call the Ipi itch and sometimes he does get a rash.  He has tolerated this medication very well and is one of the ones that Ipi has worked for and reduced lesion size and some are gone completely.  He had an inoperable lesion on his head by the spine and if they did surgery it might have left him quadraplegic.  It had also been found in the liver and the lungs.  The ones in the liver have shrunk greatly and the lungs might be totally gone as well.  If you want to read more about his journey check out his profile.

                                We lead a pretty normal life on Ipi as it hasn't gotten him down to much.  Sometimes he has a little fatigue from it but a little extra rest seems to help that.

                                Good luck with your treatments. 

                                Judy (loving wife and caregiver of Gene Stage IV)

                                yoopergirl
                                Participant

                                  I had my second infusion of Yervoy on the 30th and do have the itching, now am noticed some spots on my face but it is very tolerable with ointment, do have pills on hand if it gets too bad. Everyone is differant and you may not get any side effects. Hope it works out for you. 

                                  yoopergirl
                                  Participant

                                    I had my second infusion of Yervoy on the 30th and do have the itching, now am noticed some spots on my face but it is very tolerable with ointment, do have pills on hand if it gets too bad. Everyone is differant and you may not get any side effects. Hope it works out for you. 

                                      Maxximom
                                      Participant

                                        Dear Yoopergirl. Thank you for your reply. Since you are going to be one infusion ahead of me..I hope that you will continue to post here and keep me updated on how you are doing.How long was it before your Itching started after your infuusion? What do you take for the itch..pills and ointment…are they over the counter or do you have a perscription? I am terrible when I get itching and I just have to scratch and then if I get sore from the scratching and scab up.. I "pick"..really bad I know..so I need to try and stop any itching as best I can. Hopefully the Ipi will do the trick for both of us..thanks again..keep me postedJoan

                                        Maxximom
                                        Participant

                                          Dear Yoopergirl. Thank you for your reply. Since you are going to be one infusion ahead of me..I hope that you will continue to post here and keep me updated on how you are doing.How long was it before your Itching started after your infuusion? What do you take for the itch..pills and ointment…are they over the counter or do you have a perscription? I am terrible when I get itching and I just have to scratch and then if I get sore from the scratching and scab up.. I "pick"..really bad I know..so I need to try and stop any itching as best I can. Hopefully the Ipi will do the trick for both of us..thanks again..keep me postedJoan

                                          Maxximom
                                          Participant

                                            Dear Yoopergirl. Thank you for your reply. Since you are going to be one infusion ahead of me..I hope that you will continue to post here and keep me updated on how you are doing.How long was it before your Itching started after your infuusion? What do you take for the itch..pills and ointment…are they over the counter or do you have a perscription? I am terrible when I get itching and I just have to scratch and then if I get sore from the scratching and scab up.. I "pick"..really bad I know..so I need to try and stop any itching as best I can. Hopefully the Ipi will do the trick for both of us..thanks again..keep me postedJoan

                                            yoopergirl
                                            Participant

                                              The itching started after the second infusion, so far I just use over the counter ointment. He did prescribe pills if it gets real bad but said try not to take them unless I really have to. I live in a remote area and have to travel 120 miles to see the oncoligist, and I am his first patient on Yervoy. I did not have a problem with Medicare approval but do have a supplement too so that might make a differance. Good luck with your approval and first infusion. 

                                              yoopergirl
                                              Participant

                                                The itching started after the second infusion, so far I just use over the counter ointment. He did prescribe pills if it gets real bad but said try not to take them unless I really have to. I live in a remote area and have to travel 120 miles to see the oncoligist, and I am his first patient on Yervoy. I did not have a problem with Medicare approval but do have a supplement too so that might make a differance. Good luck with your approval and first infusion. 

                                                Maxximom
                                                Participant

                                                  thanks for the reply yoopergirl..I started another thread yesterday that I went for my first treatment only to be told that Medicare approval had not come in as yet. I also have a Medigap policy..so that was not a issue.. just that Medicare is being slow in giving approval or the hospital is not pushing hard enough. I plan to try and get on their case today. Thanks for the "itch" infomation. Sorry that you have to travel so far to see your Oncologist..that must take a lot out of you

                                                  Joan

                                                  Maxximom
                                                  Participant

                                                    thanks for the reply yoopergirl..I started another thread yesterday that I went for my first treatment only to be told that Medicare approval had not come in as yet. I also have a Medigap policy..so that was not a issue.. just that Medicare is being slow in giving approval or the hospital is not pushing hard enough. I plan to try and get on their case today. Thanks for the "itch" infomation. Sorry that you have to travel so far to see your Oncologist..that must take a lot out of you

                                                    Joan

                                                    Maxximom
                                                    Participant

                                                      thanks for the reply yoopergirl..I started another thread yesterday that I went for my first treatment only to be told that Medicare approval had not come in as yet. I also have a Medigap policy..so that was not a issue.. just that Medicare is being slow in giving approval or the hospital is not pushing hard enough. I plan to try and get on their case today. Thanks for the "itch" infomation. Sorry that you have to travel so far to see your Oncologist..that must take a lot out of you

                                                      Joan

                                                      yoopergirl
                                                      Participant

                                                        The itching started after the second infusion, so far I just use over the counter ointment. He did prescribe pills if it gets real bad but said try not to take them unless I really have to. I live in a remote area and have to travel 120 miles to see the oncoligist, and I am his first patient on Yervoy. I did not have a problem with Medicare approval but do have a supplement too so that might make a differance. Good luck with your approval and first infusion. 

                                                      yoopergirl
                                                      Participant

                                                        I had my second infusion of Yervoy on the 30th and do have the itching, now am noticed some spots on my face but it is very tolerable with ointment, do have pills on hand if it gets too bad. Everyone is differant and you may not get any side effects. Hope it works out for you. 

                                                        justlittleoleme
                                                        Participant

                                                          HI Joan,

                                                          My husband has had four infusions and no side effects!

                                                          Go plenty hydrated so it will make finding a vein easier.  It will take some time so bring a book or someone to talk to.

                                                          We usually get him set up and then I pick up lunch.  We eat lunch and that makes the time go by quickly.

                                                          Good luck!

                                                          barb

                                                          justlittleoleme
                                                          Participant

                                                            HI Joan,

                                                            My husband has had four infusions and no side effects!

                                                            Go plenty hydrated so it will make finding a vein easier.  It will take some time so bring a book or someone to talk to.

                                                            We usually get him set up and then I pick up lunch.  We eat lunch and that makes the time go by quickly.

                                                            Good luck!

                                                            barb

                                                              Maxximom
                                                              Participant

                                                                Thanks Barb. I went to the library yesterday and took out a book I have been meaning to read..and since it's my Birthday on Friday.. I strongly hinted (LOL) that maybe a Kindle or a Nook maight be a good idea..all I need is someone to teach me how to use it. My Veins are not bad.. but on Monday I had a Colonoscopy and the idiot Nurses had to try 4 times to get the IV started and I think that they totally blew my good veins..so hopefully they won't have to hard a time with me tomorrow. It is wonderful that your Husband had no side effects! Was this his last infusion?

                                                                Thanks for the hints

                                                                Joan

                                                                Maxximom
                                                                Participant

                                                                  Thanks Barb. I went to the library yesterday and took out a book I have been meaning to read..and since it's my Birthday on Friday.. I strongly hinted (LOL) that maybe a Kindle or a Nook maight be a good idea..all I need is someone to teach me how to use it. My Veins are not bad.. but on Monday I had a Colonoscopy and the idiot Nurses had to try 4 times to get the IV started and I think that they totally blew my good veins..so hopefully they won't have to hard a time with me tomorrow. It is wonderful that your Husband had no side effects! Was this his last infusion?

                                                                  Thanks for the hints

                                                                  Joan

                                                                  Maxximom
                                                                  Participant

                                                                    Thanks Barb. I went to the library yesterday and took out a book I have been meaning to read..and since it's my Birthday on Friday.. I strongly hinted (LOL) that maybe a Kindle or a Nook maight be a good idea..all I need is someone to teach me how to use it. My Veins are not bad.. but on Monday I had a Colonoscopy and the idiot Nurses had to try 4 times to get the IV started and I think that they totally blew my good veins..so hopefully they won't have to hard a time with me tomorrow. It is wonderful that your Husband had no side effects! Was this his last infusion?

                                                                    Thanks for the hints

                                                                    Joan

                                                                  justlittleoleme
                                                                  Participant

                                                                    HI Joan,

                                                                    My husband has had four infusions and no side effects!

                                                                    Go plenty hydrated so it will make finding a vein easier.  It will take some time so bring a book or someone to talk to.

                                                                    We usually get him set up and then I pick up lunch.  We eat lunch and that makes the time go by quickly.

                                                                    Good luck!

                                                                    barb

                                                                    SuzieQ
                                                                    Participant

                                                                      My Dad had 3 Yerovoy treatments at age 83. The worst side affects(and only-really) were the diarhea. It was severe for sure and he had to go to get fluids on a few occasions. You just have to stay on top of this and you can get some great results. My Dad did have tumors that shrunk and disappeared all together. He was stage 4 and is still alive after 13 months since then. He oly completed 3 treatments as his blood pressure and diarhea becam out of control This treatment is time released and you dont see it working until several months after treatment stops.My Dad improved and we are still battling. Good luck to you!

                                                                      SuzieQ
                                                                      Participant

                                                                        My Dad had 3 Yerovoy treatments at age 83. The worst side affects(and only-really) were the diarhea. It was severe for sure and he had to go to get fluids on a few occasions. You just have to stay on top of this and you can get some great results. My Dad did have tumors that shrunk and disappeared all together. He was stage 4 and is still alive after 13 months since then. He oly completed 3 treatments as his blood pressure and diarhea becam out of control This treatment is time released and you dont see it working until several months after treatment stops.My Dad improved and we are still battling. Good luck to you!

                                                                        SuzieQ
                                                                        Participant

                                                                          My Dad had 3 Yerovoy treatments at age 83. The worst side affects(and only-really) were the diarhea. It was severe for sure and he had to go to get fluids on a few occasions. You just have to stay on top of this and you can get some great results. My Dad did have tumors that shrunk and disappeared all together. He was stage 4 and is still alive after 13 months since then. He oly completed 3 treatments as his blood pressure and diarhea becam out of control This treatment is time released and you dont see it working until several months after treatment stops.My Dad improved and we are still battling. Good luck to you!

                                                                      Viewing 14 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 by MRF posting policies.

                                                                      Popular Topics