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yervoy / ipilimumab side effects
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yervoy / ipilimumab side effects

› Forums › General Melanoma Community › yervoy / ipilimumab side effects

  • Post
    • March 30, 2015 at 2:03 pm
    barrykatz
    Participant

      My father has had his first cylcle of Yervoy. the only side effect so far is very bad itching. to the point where they rash is starting to bleed because of the scratching. Our Dr. said we are not allowed to use any cream on the skin whatsoever. We are only allowed to use Benadryl or Claritin,

       

      This really does not make any sense to me. Has anybody used any cream to combat the itchy side effects ipilimumab / yervoy. Please let me know. I really would like to be able to help him with this ASAP. Thanks

    Viewing 17 reply threads
    • Replies
        • March 30, 2015 at 2:07 pm
        Aundrea
        Participant

          My husband is going to start a trial soon and this drug is one of the 2 drugs.  Our melanoma specialist said we would treat the itchys with steroids. 

            • March 30, 2015 at 2:52 pm
            clthomas2131
            Participant

              I had my first dose of yervoy + avastin back on the 20th and haven't had any itching at all.. The doctor did say to have claritin for during the day and benadry for night to help with itching but we haven't discussed anything else because I haven't had the issue yet.

              • March 30, 2015 at 3:04 pm
              barrykatz
              Participant

                the Dr, told us the same thing. He had his first dose 3/6/15. his itchiness seems pretty bad. I am just  hoping that they can give him somethng for it. the claritin/Benadryl doesnt seem to be helping. Thanks for the reply, I will keep you posted.

                • March 30, 2015 at 3:04 pm
                barrykatz
                Participant

                  the Dr, told us the same thing. He had his first dose 3/6/15. his itchiness seems pretty bad. I am just  hoping that they can give him somethng for it. the claritin/Benadryl doesnt seem to be helping. Thanks for the reply, I will keep you posted.

                  • March 30, 2015 at 3:04 pm
                  barrykatz
                  Participant

                    the Dr, told us the same thing. He had his first dose 3/6/15. his itchiness seems pretty bad. I am just  hoping that they can give him somethng for it. the claritin/Benadryl doesnt seem to be helping. Thanks for the reply, I will keep you posted.

                    • March 30, 2015 at 2:52 pm
                    clthomas2131
                    Participant

                      I had my first dose of yervoy + avastin back on the 20th and haven't had any itching at all.. The doctor did say to have claritin for during the day and benadry for night to help with itching but we haven't discussed anything else because I haven't had the issue yet.

                      • March 30, 2015 at 2:52 pm
                      clthomas2131
                      Participant

                        I had my first dose of yervoy + avastin back on the 20th and haven't had any itching at all.. The doctor did say to have claritin for during the day and benadry for night to help with itching but we haven't discussed anything else because I haven't had the issue yet.

                        • March 30, 2015 at 3:02 pm
                        barrykatz
                        Participant

                          ok thanks for the replies. I will make sure they ask the Dr, tomrrow.

                          • March 30, 2015 at 3:02 pm
                          barrykatz
                          Participant

                            ok thanks for the replies. I will make sure they ask the Dr, tomrrow.

                            • March 30, 2015 at 3:02 pm
                            barrykatz
                            Participant

                              ok thanks for the replies. I will make sure they ask the Dr, tomrrow.

                            • March 30, 2015 at 2:07 pm
                            Aundrea
                            Participant

                              My husband is going to start a trial soon and this drug is one of the 2 drugs.  Our melanoma specialist said we would treat the itchys with steroids. 

                              • March 30, 2015 at 2:07 pm
                              Aundrea
                              Participant

                                My husband is going to start a trial soon and this drug is one of the 2 drugs.  Our melanoma specialist said we would treat the itchys with steroids. 

                                • March 30, 2015 at 4:58 pm
                                sweetaugust
                                Participant

                                  I had an itchy rash on my chest and back of scalp from my Keytruda treatments.  It made me crazy.  Had this for the first 2 years.  I decided not to go the route of pilss or prescription creams though.  So what finally worked for me was Natures Gate Colloidal Oatmeal lotion (found online or at Whole Foods) and adding some tea tree oil.  The tea tree oil stinks like medicine, but it really does heal the skin. 

                                  Good luck and I hope it helps.  Laurie

                                    • March 30, 2015 at 5:00 pm
                                    sweetaugust
                                    Participant

                                      I should add that now I have now not had any itchy rash for about 6 months now…ever since I started using these items. 

                                      • March 30, 2015 at 5:00 pm
                                      sweetaugust
                                      Participant

                                        I should add that now I have now not had any itchy rash for about 6 months now…ever since I started using these items. 

                                        • March 30, 2015 at 5:00 pm
                                        sweetaugust
                                        Participant

                                          I should add that now I have now not had any itchy rash for about 6 months now…ever since I started using these items. 

                                          • April 3, 2015 at 4:04 pm
                                          Jubes
                                          Participant

                                            Are you still on keytruda? How long have you had no rash?

                                            • April 3, 2015 at 4:06 pm
                                            Jubes
                                            Participant

                                              Sorry just saw your next comment. So you have been on keytruda 2 yrs and 6 months and no rash after 2 years? Have you had any other side effects?

                                              • April 6, 2015 at 2:50 pm
                                              sweetaugust
                                              Participant

                                                Yes.  I have not had any kind of rash now for the past 6 months.  I had used the Natures Gate Colloidal Oatmeal lotion on my chest after the first year of that pain, burning and itching…and it went away.   Then shortly after that disappeared, a horrible itchy, burning rash developed all over the back of my scalp and neck and nothing got rid of it until 6 months ago when I started using the Natures Gate Tea Tree shampoo and conditioner daily.  Within a month it totally disappeared.  I had decided to try that shampoo because my hairdresser mentioned that Tea Tree oil is very good for skin ailments…so I thought I'd try Nature's Gate Tea Tree shampoo and I sometimes added the actual Tea Tree Essential Oil directly to my scalp…but that I only did a couple times because it really does stink like medicine, then would get on my pillow and I'd smell it all night. 

                                                As for other side effects I've experienced while on Keytruda:  I had nausea for the first two years.  Mostly in the first week after treatment.  Usually just for 30 minutes, but on rare occurances for 6 hours.  I have vitaligo as a result of the treatment…but it's not bad…just about 10-15 spots on my torso and upper body that look like perfect round quarter-sized white spots.  I have had joint pain in my knees and hips and elbows, but that never lasts more than a day or so and has only happened less than 10 times in the past 2.5 years.  But it was mostly the rashes and nausea that I have had trouble with.

                                                Laurie

                                                • April 6, 2015 at 2:50 pm
                                                sweetaugust
                                                Participant

                                                  Yes.  I have not had any kind of rash now for the past 6 months.  I had used the Natures Gate Colloidal Oatmeal lotion on my chest after the first year of that pain, burning and itching…and it went away.   Then shortly after that disappeared, a horrible itchy, burning rash developed all over the back of my scalp and neck and nothing got rid of it until 6 months ago when I started using the Natures Gate Tea Tree shampoo and conditioner daily.  Within a month it totally disappeared.  I had decided to try that shampoo because my hairdresser mentioned that Tea Tree oil is very good for skin ailments…so I thought I'd try Nature's Gate Tea Tree shampoo and I sometimes added the actual Tea Tree Essential Oil directly to my scalp…but that I only did a couple times because it really does stink like medicine, then would get on my pillow and I'd smell it all night. 

                                                  As for other side effects I've experienced while on Keytruda:  I had nausea for the first two years.  Mostly in the first week after treatment.  Usually just for 30 minutes, but on rare occurances for 6 hours.  I have vitaligo as a result of the treatment…but it's not bad…just about 10-15 spots on my torso and upper body that look like perfect round quarter-sized white spots.  I have had joint pain in my knees and hips and elbows, but that never lasts more than a day or so and has only happened less than 10 times in the past 2.5 years.  But it was mostly the rashes and nausea that I have had trouble with.

                                                  Laurie

                                                  • April 6, 2015 at 2:50 pm
                                                  sweetaugust
                                                  Participant

                                                    Yes.  I have not had any kind of rash now for the past 6 months.  I had used the Natures Gate Colloidal Oatmeal lotion on my chest after the first year of that pain, burning and itching…and it went away.   Then shortly after that disappeared, a horrible itchy, burning rash developed all over the back of my scalp and neck and nothing got rid of it until 6 months ago when I started using the Natures Gate Tea Tree shampoo and conditioner daily.  Within a month it totally disappeared.  I had decided to try that shampoo because my hairdresser mentioned that Tea Tree oil is very good for skin ailments…so I thought I'd try Nature's Gate Tea Tree shampoo and I sometimes added the actual Tea Tree Essential Oil directly to my scalp…but that I only did a couple times because it really does stink like medicine, then would get on my pillow and I'd smell it all night. 

                                                    As for other side effects I've experienced while on Keytruda:  I had nausea for the first two years.  Mostly in the first week after treatment.  Usually just for 30 minutes, but on rare occurances for 6 hours.  I have vitaligo as a result of the treatment…but it's not bad…just about 10-15 spots on my torso and upper body that look like perfect round quarter-sized white spots.  I have had joint pain in my knees and hips and elbows, but that never lasts more than a day or so and has only happened less than 10 times in the past 2.5 years.  But it was mostly the rashes and nausea that I have had trouble with.

                                                    Laurie

                                                    • April 3, 2015 at 4:06 pm
                                                    Jubes
                                                    Participant

                                                      Sorry just saw your next comment. So you have been on keytruda 2 yrs and 6 months and no rash after 2 years? Have you had any other side effects?

                                                      • April 3, 2015 at 4:06 pm
                                                      Jubes
                                                      Participant

                                                        Sorry just saw your next comment. So you have been on keytruda 2 yrs and 6 months and no rash after 2 years? Have you had any other side effects?

                                                        • April 3, 2015 at 4:04 pm
                                                        Jubes
                                                        Participant

                                                          Are you still on keytruda? How long have you had no rash?

                                                          • April 3, 2015 at 4:04 pm
                                                          Jubes
                                                          Participant

                                                            Are you still on keytruda? How long have you had no rash?

                                                          • March 30, 2015 at 4:58 pm
                                                          sweetaugust
                                                          Participant

                                                            I had an itchy rash on my chest and back of scalp from my Keytruda treatments.  It made me crazy.  Had this for the first 2 years.  I decided not to go the route of pilss or prescription creams though.  So what finally worked for me was Natures Gate Colloidal Oatmeal lotion (found online or at Whole Foods) and adding some tea tree oil.  The tea tree oil stinks like medicine, but it really does heal the skin. 

                                                            Good luck and I hope it helps.  Laurie

                                                            • March 30, 2015 at 4:58 pm
                                                            sweetaugust
                                                            Participant

                                                              I had an itchy rash on my chest and back of scalp from my Keytruda treatments.  It made me crazy.  Had this for the first 2 years.  I decided not to go the route of pilss or prescription creams though.  So what finally worked for me was Natures Gate Colloidal Oatmeal lotion (found online or at Whole Foods) and adding some tea tree oil.  The tea tree oil stinks like medicine, but it really does heal the skin. 

                                                              Good luck and I hope it helps.  Laurie

                                                              • March 30, 2015 at 5:16 pm
                                                              arthurjedi007
                                                              Participant

                                                                It sounds like you have a good doc. Those creams are probably all cortisone based. Thus can have the opposite affect of ipi. 

                                                                Like Laurie said that oatmeal based thing would be great for the itching and help heal the skin. Also some liquid vitamin e can help too. 

                                                                Artie

                                                                  • March 30, 2015 at 7:23 pm
                                                                  barrykatz
                                                                  Participant

                                                                    thanks for the reply. Appreciate the info. I will keep you guys posted.

                                                                    • March 30, 2015 at 7:23 pm
                                                                    barrykatz
                                                                    Participant

                                                                      thanks for the reply. Appreciate the info. I will keep you guys posted.

                                                                      • March 30, 2015 at 7:23 pm
                                                                      barrykatz
                                                                      Participant

                                                                        thanks for the reply. Appreciate the info. I will keep you guys posted.

                                                                      • March 30, 2015 at 5:16 pm
                                                                      arthurjedi007
                                                                      Participant

                                                                        It sounds like you have a good doc. Those creams are probably all cortisone based. Thus can have the opposite affect of ipi. 

                                                                        Like Laurie said that oatmeal based thing would be great for the itching and help heal the skin. Also some liquid vitamin e can help too. 

                                                                        Artie

                                                                        • March 30, 2015 at 5:16 pm
                                                                        arthurjedi007
                                                                        Participant

                                                                          It sounds like you have a good doc. Those creams are probably all cortisone based. Thus can have the opposite affect of ipi. 

                                                                          Like Laurie said that oatmeal based thing would be great for the itching and help heal the skin. Also some liquid vitamin e can help too. 

                                                                          Artie

                                                                          • March 31, 2015 at 12:44 am
                                                                          Polymath
                                                                          Participant

                                                                            I got what my onc called the worst skin rash reaction he had ever seen from my initial treatment on Zelboraf.

                                                                            I tried a pill, Hydroxyzine (generic for Atarax), but not being to keen on taking more meds, they prescribed a lotion Sodium Sulfacet Sulfer that offered mderate relief, and my derm also prescribed Ammonium Lactate (12% Lactic Acid) cream which helped with extreme dryness.  These meds have all been OK'd through later treatment of TAF/MEK combo, Yervoy, and now Keytruda.  So there are definitely drugs both oral and topical that can help, and do not interact with primary drug therapy.  Once I started on Yervoy, I was prescribed Prednisone (steroid) as a preventative measure and have had almost no side effects at all from Yervoy or Keytruda.

                                                                            • March 31, 2015 at 12:44 am
                                                                            Polymath
                                                                            Participant

                                                                              I got what my onc called the worst skin rash reaction he had ever seen from my initial treatment on Zelboraf.

                                                                              I tried a pill, Hydroxyzine (generic for Atarax), but not being to keen on taking more meds, they prescribed a lotion Sodium Sulfacet Sulfer that offered mderate relief, and my derm also prescribed Ammonium Lactate (12% Lactic Acid) cream which helped with extreme dryness.  These meds have all been OK'd through later treatment of TAF/MEK combo, Yervoy, and now Keytruda.  So there are definitely drugs both oral and topical that can help, and do not interact with primary drug therapy.  Once I started on Yervoy, I was prescribed Prednisone (steroid) as a preventative measure and have had almost no side effects at all from Yervoy or Keytruda.

                                                                              • March 31, 2015 at 12:44 am
                                                                              Polymath
                                                                              Participant

                                                                                I got what my onc called the worst skin rash reaction he had ever seen from my initial treatment on Zelboraf.

                                                                                I tried a pill, Hydroxyzine (generic for Atarax), but not being to keen on taking more meds, they prescribed a lotion Sodium Sulfacet Sulfer that offered mderate relief, and my derm also prescribed Ammonium Lactate (12% Lactic Acid) cream which helped with extreme dryness.  These meds have all been OK'd through later treatment of TAF/MEK combo, Yervoy, and now Keytruda.  So there are definitely drugs both oral and topical that can help, and do not interact with primary drug therapy.  Once I started on Yervoy, I was prescribed Prednisone (steroid) as a preventative measure and have had almost no side effects at all from Yervoy or Keytruda.

                                                                                • April 2, 2015 at 4:26 am
                                                                                Ginger8888
                                                                                Participant

                                                                                  I was one of the luck ones that had no side effects of Yervoy but have heard that goats milk soap is good for the rash and itching..I finished it Aug 13th and have been NED since then, Good luck!

                                                                                  • April 2, 2015 at 4:26 am
                                                                                  Ginger8888
                                                                                  Participant

                                                                                    I was one of the luck ones that had no side effects of Yervoy but have heard that goats milk soap is good for the rash and itching..I finished it Aug 13th and have been NED since then, Good luck!

                                                                                    • April 2, 2015 at 4:26 am
                                                                                    Ginger8888
                                                                                    Participant

                                                                                      I was one of the luck ones that had no side effects of Yervoy but have heard that goats milk soap is good for the rash and itching..I finished it Aug 13th and have been NED since then, Good luck!

                                                                                      • May 14, 2015 at 5:25 pm
                                                                                      Speedster
                                                                                      Participant

                                                                                        Thanks for all the ideas for the itchy rash.  I went and got aloe gel, Nature's Gate Collodial Oatmeal cream and goat's milk soap.  The provided some releif, yet it took 0.5% steriod cream (stronger dose) to finally brings things to a point where I could stand the itching and prickly feeling at night.  I'll continue to use the natural remedies from here on out as it's better managed. 

                                                                                        • May 14, 2015 at 5:25 pm
                                                                                        Speedster
                                                                                        Participant

                                                                                          Thanks for all the ideas for the itchy rash.  I went and got aloe gel, Nature's Gate Collodial Oatmeal cream and goat's milk soap.  The provided some releif, yet it took 0.5% steriod cream (stronger dose) to finally brings things to a point where I could stand the itching and prickly feeling at night.  I'll continue to use the natural remedies from here on out as it's better managed. 

                                                                                          • May 14, 2015 at 5:25 pm
                                                                                          Speedster
                                                                                          Participant

                                                                                            Thanks for all the ideas for the itchy rash.  I went and got aloe gel, Nature's Gate Collodial Oatmeal cream and goat's milk soap.  The provided some releif, yet it took 0.5% steriod cream (stronger dose) to finally brings things to a point where I could stand the itching and prickly feeling at night.  I'll continue to use the natural remedies from here on out as it's better managed. 

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