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How to Best Prepare for Yervoy Treatments
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How to Best Prepare for Yervoy Treatments

› Forums › General Melanoma Community › How to Best Prepare for Yervoy Treatments

  • Post
    • September 18, 2011 at 11:15 pm
    markindallas
    Participant

      Hi Everyone,

      I have stage IV Melanoma, and while I have a few tumors at the moment, I am fortunately living a fairly normal life.  I know that can change anytime, but I am insistent on taking things one day at a time. 

      Hi Everyone,

      I have stage IV Melanoma, and while I have a few tumors at the moment, I am fortunately living a fairly normal life.  I know that can change anytime, but I am insistent on taking things one day at a time. 

      So in just a few days, I am scheduled to have my first Yervoy infusion (sounds like I'm a vodka).  I've glanced over the massive list of POSSIBLE side effects, but don't really have any good information about WHAT I should be prepared for and WHEN side effects might happen if they do.  Also, what should I be asking my doctor before starting this treatment? 

      From reading people's comments, all I have gathered so far is that I should get a prescription for diarrhea and have it standing by… and if I have bad headaches, make sure to tell the doctor immediately because it might be a pituitary gland thing.  That's really all I've got… which doesn't feel like much.

      So I thought I would ask you!  If you or a loved one is having or has had Yervoy treatments… what advice would you give someone who's just about to start their first treatment?

      Thanks for taking the time to respond!

      -Mark in Dallas

    Viewing 14 reply threads
    • Replies
        • September 18, 2011 at 11:48 pm
        Lisa13
        Participant

          Hi Mark,

          You seem to have a great attitude and that is half the battle!  It sucks that you have Stage 4, but hopefully you'll be a responder to Yervoy.

          I'm scheduled to have my 3rd infusion of Yervoy next week. I was expecting to get a whole bunch of side effects, but I havn't really had much of anything, but I know this can change.  To date, I've had itchy skin and a very faint rash on my upper chest. I also have stomach pains sometimes that feel like I'm going to need that perscription, but nothing has actually happened.  The one piece of advice I can give you is to notify your Dr. of ANYTHING that may seem unusual to you because something as simple as diarrhea can manifest into something very ugly.   Besides that, there are so many side effects that could happen, but alot of them only happen in a small percentage of people such as the pituitary gland thing. Just be mindful of everything that seems like a symptom and report it.

          I really wish you the very best with your treatment and hope that those few tumours you have disappear.

          Lisa – Stage 4 lung mets

          • September 18, 2011 at 11:48 pm
          Lisa13
          Participant

            Hi Mark,

            You seem to have a great attitude and that is half the battle!  It sucks that you have Stage 4, but hopefully you'll be a responder to Yervoy.

            I'm scheduled to have my 3rd infusion of Yervoy next week. I was expecting to get a whole bunch of side effects, but I havn't really had much of anything, but I know this can change.  To date, I've had itchy skin and a very faint rash on my upper chest. I also have stomach pains sometimes that feel like I'm going to need that perscription, but nothing has actually happened.  The one piece of advice I can give you is to notify your Dr. of ANYTHING that may seem unusual to you because something as simple as diarrhea can manifest into something very ugly.   Besides that, there are so many side effects that could happen, but alot of them only happen in a small percentage of people such as the pituitary gland thing. Just be mindful of everything that seems like a symptom and report it.

            I really wish you the very best with your treatment and hope that those few tumours you have disappear.

            Lisa – Stage 4 lung mets

            • September 19, 2011 at 2:32 am
            liseabraham
            Participant

              Hi, my husband just had his third Yervoy treatment and I would be glad to share his experience vis a vis side effects. The first infusion caused him the most abdominal discomfort. We are not sure if it was because it was new and we did not know how to conteract the symptoms but here are a few things that helped him. Basically his abdominal discomfort was caused by gastritus so his gastroenterologist put him on a course of Dexilant 60 mg daily. Also he takes Carafate orally before each meal (this coats the stomach). He also finds that some of the abdominal pain is alleviated by eating small meals several times a day. His oncologist gave him various medications for nausea and diarreah but he has not suffered much from these side effects. I hope this is helpful to you and good luck with your Yervoy treatments.

              Lise (wife to Ed Abraham)

              • September 19, 2011 at 2:32 am
              liseabraham
              Participant

                Hi, my husband just had his third Yervoy treatment and I would be glad to share his experience vis a vis side effects. The first infusion caused him the most abdominal discomfort. We are not sure if it was because it was new and we did not know how to conteract the symptoms but here are a few things that helped him. Basically his abdominal discomfort was caused by gastritus so his gastroenterologist put him on a course of Dexilant 60 mg daily. Also he takes Carafate orally before each meal (this coats the stomach). He also finds that some of the abdominal pain is alleviated by eating small meals several times a day. His oncologist gave him various medications for nausea and diarreah but he has not suffered much from these side effects. I hope this is helpful to you and good luck with your Yervoy treatments.

                Lise (wife to Ed Abraham)

                • September 19, 2011 at 2:45 am
                mclaus23
                Participant

                  Hi Mark,

                  My father is stage IV and will have his third treaetment on Wed. He had extreme abdominal pain 5 days after first treatment. Since, he has had some mild abdominal discomfort, nightly sweats then chills, and fatigue.

                  Overall he feels ok though.
                  Good luck and if there is any help we can provide thru the site let us know!

                   

                  Maggie

                    • September 19, 2011 at 3:42 am
                    momof2kids
                    Participant

                      I had my 1st treatment on Sept 2, 2011, and have only suffered from super dry head skin, flaking off like very bad dandruff, it's horrible looking, but besides that no other side effects that I've noticed.

                       

                      • September 19, 2011 at 10:50 am
                      Vermont_Donna
                      Participant

                        Hi,

                          I completed four infusions of Yervoy as part of a clinical trial back in December 2010 through February 2011. I received 3mk/kg. Yes there was a 26 page, front and back description of the study and all the many possible side effects including death. But I signed away and didnt look back. I was facing losing my entire right leg, and with my propensity for severe cellulitis infections and non healing wounds I didnt think a leg amputuation was a good idea for me, also for many other reasons, ie quality of life and the fact that with stage 3a melanoma, I didnt think a leg amputation was a "cure".

                         I did NOT experience many side effects at all! Some nausea (sometimes severe, and I had two precribed by my oncologist anti nausea meds) and some fatigue, and a small non itchy rash somehwere, I dont even remember where. I had stopped working but I probably could have worked, in hindsight thinking about it all now.

                        I would not get a prescription for diarrhea to have on standby UNLESS your oncologist wants you to have it…..the diarrhea if you get it is NOT treated the same way as usual diarrhea. YOU NEED to STAY in TOUCH with your oncologist and report ANY SYMPTOMS immediately. The doctor will tell you what is considered normal, or to be expected and what needs to be treated right away, etc. DONT rely on a regular doctor for this, or anyone else but your oncologist. A MELANOMA ONCOLOGIST!!!

                        Dont be afraid to do this drug. I am a complete responder and have been NED for 6 months. Some of us have sailed through the treatments and have had a GREAT response. See my profile for more of my experience with YERVOY!!

                        Vermont_Donna, stage 3a, NED

                        • September 19, 2011 at 10:50 am
                        Vermont_Donna
                        Participant

                          Hi,

                            I completed four infusions of Yervoy as part of a clinical trial back in December 2010 through February 2011. I received 3mk/kg. Yes there was a 26 page, front and back description of the study and all the many possible side effects including death. But I signed away and didnt look back. I was facing losing my entire right leg, and with my propensity for severe cellulitis infections and non healing wounds I didnt think a leg amputuation was a good idea for me, also for many other reasons, ie quality of life and the fact that with stage 3a melanoma, I didnt think a leg amputation was a "cure".

                           I did NOT experience many side effects at all! Some nausea (sometimes severe, and I had two precribed by my oncologist anti nausea meds) and some fatigue, and a small non itchy rash somehwere, I dont even remember where. I had stopped working but I probably could have worked, in hindsight thinking about it all now.

                          I would not get a prescription for diarrhea to have on standby UNLESS your oncologist wants you to have it…..the diarrhea if you get it is NOT treated the same way as usual diarrhea. YOU NEED to STAY in TOUCH with your oncologist and report ANY SYMPTOMS immediately. The doctor will tell you what is considered normal, or to be expected and what needs to be treated right away, etc. DONT rely on a regular doctor for this, or anyone else but your oncologist. A MELANOMA ONCOLOGIST!!!

                          Dont be afraid to do this drug. I am a complete responder and have been NED for 6 months. Some of us have sailed through the treatments and have had a GREAT response. See my profile for more of my experience with YERVOY!!

                          Vermont_Donna, stage 3a, NED

                          • September 19, 2011 at 3:42 am
                          momof2kids
                          Participant

                            I had my 1st treatment on Sept 2, 2011, and have only suffered from super dry head skin, flaking off like very bad dandruff, it's horrible looking, but besides that no other side effects that I've noticed.

                             

                          • September 19, 2011 at 2:45 am
                          mclaus23
                          Participant

                            Hi Mark,

                            My father is stage IV and will have his third treaetment on Wed. He had extreme abdominal pain 5 days after first treatment. Since, he has had some mild abdominal discomfort, nightly sweats then chills, and fatigue.

                            Overall he feels ok though.
                            Good luck and if there is any help we can provide thru the site let us know!

                             

                            Maggie

                            • September 20, 2011 at 12:32 am
                            j.m.l.
                            Participant

                              I just finished my first infusion. Side effects have been minimal. I read about everything but remember everyone is different. The main thing I learned was just know yourself and do not self medicate. Call your oncologist immed. and report anything thats not usual for you. Good luck.

                              • September 20, 2011 at 12:32 am
                              j.m.l.
                              Participant

                                I just finished my first infusion. Side effects have been minimal. I read about everything but remember everyone is different. The main thing I learned was just know yourself and do not self medicate. Call your oncologist immed. and report anything thats not usual for you. Good luck.

                                • September 20, 2011 at 12:32 am
                                j.m.l.
                                Participant

                                  I just finished my first infusion. Side effects have been minimal. I read about everything but remember everyone is different. The main thing I learned was just know yourself and do not self medicate. Call your oncologist immed. and report anything thats not usual for you. Good luck.

                                  • September 20, 2011 at 12:32 am
                                  j.m.l.
                                  Participant

                                    I just finished my first infusion. Side effects have been minimal. I read about everything but remember everyone is different. The main thing I learned was just know yourself and do not self medicate. Call your oncologist immed. and report anything thats not usual for you. Good luck.

                                    • September 23, 2011 at 2:32 am
                                    markindallas
                                    Participant

                                      Thanks for the comments everyone!  It's really nice to know other people are dealing with the same things I am.  I hope these posts help newcomers too!

                                      My update…

                                      Day 1: First treatment (Tuesday).  I didn't know that they were gonna give me Benadryl before the treatment.  Not sure if that is standard protocol or not.  Fortunately, it didn't make me too sleepy to drive home.

                                      Day 2:  No side effects.  Normal workday

                                      Day 3:  No side effects.  Normal workday

                                      I'll try to keep you posted…  Thinking good thoughts for everyone.

                                      Mark in Dallas

                                      • September 23, 2011 at 2:32 am
                                      markindallas
                                      Participant

                                        Thanks for the comments everyone!  It's really nice to know other people are dealing with the same things I am.  I hope these posts help newcomers too!

                                        My update…

                                        Day 1: First treatment (Tuesday).  I didn't know that they were gonna give me Benadryl before the treatment.  Not sure if that is standard protocol or not.  Fortunately, it didn't make me too sleepy to drive home.

                                        Day 2:  No side effects.  Normal workday

                                        Day 3:  No side effects.  Normal workday

                                        I'll try to keep you posted…  Thinking good thoughts for everyone.

                                        Mark in Dallas

                                        • September 3, 2013 at 3:07 am
                                        tschmith
                                        Participant

                                          I'm getting my first Yervoy infusion on Thursday and am very excitied!!!!   Kind of nutty, I guess, but I want to get my chance to beat melanoma…as I'm sure we all do.  My prayers are for all of you as we struggle in this journey together. I'm also going through radiation to treat a tumor on my L2 vertebrae.  Can't wait for that thing to shrink.  It hurts!  This will be concurrent treatment. Quite interesting! Oh, I'm Stage IV with some spots here and there.  The originai melanoma was a tiny spot on my arm back in 1998.  Didn't have any other problems (that I know of) until Feb 2013!  Almost 15 years!   If anyone is looking for treatment, I am very pleased with the care that I am receiving at Johns Hopkins.  My very best to all of you!smiley

                                          • September 3, 2013 at 3:07 am
                                          tschmith
                                          Participant

                                            I'm getting my first Yervoy infusion on Thursday and am very excitied!!!!   Kind of nutty, I guess, but I want to get my chance to beat melanoma…as I'm sure we all do.  My prayers are for all of you as we struggle in this journey together. I'm also going through radiation to treat a tumor on my L2 vertebrae.  Can't wait for that thing to shrink.  It hurts!  This will be concurrent treatment. Quite interesting! Oh, I'm Stage IV with some spots here and there.  The originai melanoma was a tiny spot on my arm back in 1998.  Didn't have any other problems (that I know of) until Feb 2013!  Almost 15 years!   If anyone is looking for treatment, I am very pleased with the care that I am receiving at Johns Hopkins.  My very best to all of you!smiley

                                            • September 3, 2013 at 3:07 am
                                            tschmith
                                            Participant

                                              I'm getting my first Yervoy infusion on Thursday and am very excitied!!!!   Kind of nutty, I guess, but I want to get my chance to beat melanoma…as I'm sure we all do.  My prayers are for all of you as we struggle in this journey together. I'm also going through radiation to treat a tumor on my L2 vertebrae.  Can't wait for that thing to shrink.  It hurts!  This will be concurrent treatment. Quite interesting! Oh, I'm Stage IV with some spots here and there.  The originai melanoma was a tiny spot on my arm back in 1998.  Didn't have any other problems (that I know of) until Feb 2013!  Almost 15 years!   If anyone is looking for treatment, I am very pleased with the care that I am receiving at Johns Hopkins.  My very best to all of you!smiley

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