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Now on IPI, Yippie! ; ? about IT please, IPI people.

Forums General Melanoma Community Now on IPI, Yippie! ; ? about IT please, IPI people.

  • Post
    glewis923
    Participant

      Hello from Hoboken, GA:  After 1 wk. SRS then 2 wks. WBrainRad,  I'm now offically on Ipilimumab (IPI).  Started last Thursday, less than week after WBR. and feeling quite well under circumstances.  Questions on IPI:

      1- How long did it take for you to "present" any side effects..? 

      2- Took bath last night and started itching around waistline, upper thighs;   stopped after I cooled off;  IPI ??

      3- Is it really true that showing some side effects "means its working"?

       

      Hello from Hoboken, GA:  After 1 wk. SRS then 2 wks. WBrainRad,  I'm now offically on Ipilimumab (IPI).  Started last Thursday, less than week after WBR. and feeling quite well under circumstances.  Questions on IPI:

      1- How long did it take for you to "present" any side effects..? 

      2- Took bath last night and started itching around waistline, upper thighs;   stopped after I cooled off;  IPI ??

      3- Is it really true that showing some side effects "means its working"?

       

      Thanks for any input.  Love, Grady.

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    • Replies
        nickmac56
        Participant

          My wife was on Ipi for the 4 infusions, and it failed. She started having itching at week 7, and it continues to this point (about week 18). Most of her severe itching was related to areas of clothing contact (i.e., waistband) and where she got warm (her back, from sitting in a chair). Ultimately it was pretty much all over and varied somewhat. She presented no other side effects. But sadly, signs of side effects like itching, in her case, did not result in a positive outcome. 

          Hope your outcome is positive.

          Nick

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          nickmac56
          Participant

            My wife was on Ipi for the 4 infusions, and it failed. She started having itching at week 7, and it continues to this point (about week 18). Most of her severe itching was related to areas of clothing contact (i.e., waistband) and where she got warm (her back, from sitting in a chair). Ultimately it was pretty much all over and varied somewhat. She presented no other side effects. But sadly, signs of side effects like itching, in her case, did not result in a positive outcome. 

            Hope your outcome is positive.

            Nick

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            LynnLuc
            Participant

              Good Luck Grady!!! Hope you are a great responder!!!

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              LynnLuc
              Participant

                Good Luck Grady!!! Hope you are a great responder!!!

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                jag
                Participant

                  I don't know what the side effects are Grady, but glad to hear that you have already started!!

                  Good Luck and prayers!

                  John

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                  jag
                  Participant

                    I don't know what the side effects are Grady, but glad to hear that you have already started!!

                    Good Luck and prayers!

                    John

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                    TAC
                    Participant

                      Grady…a friend who has had IL2 and whole brain radiation has been on IPI and has had a good response with minimal side effects. Hope you do well on it.

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                        dawn dion
                        Participant

                          Grady

                          Yes and Yes!   Did IPI for a short time and the entire time and for three and a half months after coming off IPI all I did was ITCH!!!!  Get some Eucerne Cream or Aveeno.  I found that Aveeno with Menthol worked best right out of the shower but Eucerne(sp)  worked the best for me.   Best of Luck to you.   FYI  if the itching gets to bad they will give you a steroid to back it down, but for me it never totally went away. 

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                          Vermont_Donna
                          Participant

                            Hi,

                            I did 4 infusions of Ipi, am now in the 12 weeks of no treatment. I am a complete responder, all cutaneous and sub-q's on my leg are gone. There was no sign of cancer anywhere else and still isnt per my last scans three weeks ago.

                            I have had minimal side effects……no itching except on part of my lower right calf where I have bandages from poorly healing surgical leg wounds so I think the itching is related to skin breakdown there. I have had some nausea (take compazine or zofran). I have been more tired than normal, but not like when I did the Interferon. I am probably week 18 now and I did get a rash about three weeks ago that does not itch. Showers or heat does not make me itch. I am working out three days a week at a gym and that is going ok too, no increased itching and I think it helps with my energy level.

                            Good luck with Ipi…you've been through so much. I hope you are a responder!

                            Vermont_Donna, stage 3a

                            stable after 4 infusions of Ipi

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                            killmel
                            Participant

                              Hi Donna,

                               

                              I was so happy to read your post. IPI is amazing for you. How many mets did you have in your leg that are know gone?? What were the sizes of your met & Sub-q.

                              I too have sub-q in my leg. & trying to decide between BRAF, Braf/MEK & IPI.

                              Looking forward to your reply about your mets. Thank you so much for the info. It will help me make a decison on treatment.

                              Good Luck with scans.

                              Wendy

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                              Vermont_Donna
                              Participant

                                Hi Wendy,

                                I had between 50 and 60 cutaneous melanoma tumors (metastases), about the size of a pencil eraser or smaller, scattered all over my right leg, mostly from the above the knee area down, but I had three mid thigh and above. My sub q's were larger than a quarter, made the skin turn purple above and hurt. I had two or three of these. My first signs that the Ipi was working was the smallest tumor crusted over and flaked off, then the rest just magically reabsorbed. I can see the purple marks where they were but I cannot feel any sub q's or any lumps anywhere! This is great news for me as my melanoma team wanted me to consider "hip disarticulation"….a total leg removal from the hip socket. I did not want to do that for a variety of reasons. Yes Ipi has been AMAZING for me, and relatively few side effects, and certainly all of them I could gladly live with!! Now to see if ipi holds a "durable response" for me…… I am BRAF negative so could not do any of those treatments/trials.

                                Good luck with your decision making and write anytime!

                                Vermont_Donna, stage 3a

                                stable after 4 infusions of Ipi

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                                lhaley
                                Participant

                                  Donna,

                                  I am so happy to hear your news!! You really need to put it as a separate post so it isn't missed!  It's such encouraging news!!

                                  Linda

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                                  lhaley
                                  Participant

                                    Donna,

                                    I am so happy to hear your news!! You really need to put it as a separate post so it isn't missed!  It's such encouraging news!!

                                    Linda

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                                    Vermont_Donna
                                    Participant

                                      Hi Wendy,

                                      I had between 50 and 60 cutaneous melanoma tumors (metastases), about the size of a pencil eraser or smaller, scattered all over my right leg, mostly from the above the knee area down, but I had three mid thigh and above. My sub q's were larger than a quarter, made the skin turn purple above and hurt. I had two or three of these. My first signs that the Ipi was working was the smallest tumor crusted over and flaked off, then the rest just magically reabsorbed. I can see the purple marks where they were but I cannot feel any sub q's or any lumps anywhere! This is great news for me as my melanoma team wanted me to consider "hip disarticulation"….a total leg removal from the hip socket. I did not want to do that for a variety of reasons. Yes Ipi has been AMAZING for me, and relatively few side effects, and certainly all of them I could gladly live with!! Now to see if ipi holds a "durable response" for me…… I am BRAF negative so could not do any of those treatments/trials.

                                      Good luck with your decision making and write anytime!

                                      Vermont_Donna, stage 3a

                                      stable after 4 infusions of Ipi

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                                      killmel
                                      Participant

                                        Hi Donna,

                                         

                                        I was so happy to read your post. IPI is amazing for you. How many mets did you have in your leg that are know gone?? What were the sizes of your met & Sub-q.

                                        I too have sub-q in my leg. & trying to decide between BRAF, Braf/MEK & IPI.

                                        Looking forward to your reply about your mets. Thank you so much for the info. It will help me make a decison on treatment.

                                        Good Luck with scans.

                                        Wendy

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                                        Vermont_Donna
                                        Participant

                                          Hi,

                                          I did 4 infusions of Ipi, am now in the 12 weeks of no treatment. I am a complete responder, all cutaneous and sub-q's on my leg are gone. There was no sign of cancer anywhere else and still isnt per my last scans three weeks ago.

                                          I have had minimal side effects……no itching except on part of my lower right calf where I have bandages from poorly healing surgical leg wounds so I think the itching is related to skin breakdown there. I have had some nausea (take compazine or zofran). I have been more tired than normal, but not like when I did the Interferon. I am probably week 18 now and I did get a rash about three weeks ago that does not itch. Showers or heat does not make me itch. I am working out three days a week at a gym and that is going ok too, no increased itching and I think it helps with my energy level.

                                          Good luck with Ipi…you've been through so much. I hope you are a responder!

                                          Vermont_Donna, stage 3a

                                          stable after 4 infusions of Ipi

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                                          dawn dion
                                          Participant

                                            Grady

                                            Yes and Yes!   Did IPI for a short time and the entire time and for three and a half months after coming off IPI all I did was ITCH!!!!  Get some Eucerne Cream or Aveeno.  I found that Aveeno with Menthol worked best right out of the shower but Eucerne(sp)  worked the best for me.   Best of Luck to you.   FYI  if the itching gets to bad they will give you a steroid to back it down, but for me it never totally went away. 

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                                          TAC
                                          Participant

                                            Grady…a friend who has had IL2 and whole brain radiation has been on IPI and has had a good response with minimal side effects. Hope you do well on it.

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                                            Jerry from Cape Cod
                                            Participant

                                              Hi Grady,

                                              Just through week 109 of Ipi.  Side effects vary as well as how fast and long your body will respond to treatment.  My side effects have moderated, but still responding.

                                               
                                              At the first (3) week check my NP noticed a lacy rash.  I'd been itchy, but put it off to other sources.  I also have mild GI problems, thyroid problems, hair going white, vitilago.  I took just about everything possible for the rash.  I think I've just gotten so used to it that I take a couple of benedryl when it gets bad.  Much better than the cost of all the creams & lotions.

                                              I'd be very careful of the steroids.  They will lessen some of the side effects, but they also moderate the immune system.  Your doctors will probably only give steroids for more severe side effects.

                                              Some responders show side effects faster and more intense than others.  Generally most but not all really present some side effects.

                                              Best wishes,

                                              Jerry from Cape Cod

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                                                glewis923
                                                Participant

                                                  Hello Jerry,

                                                  week 109 !!  I guess it must be working well, which is great.  Yeah, my radiologist MD told me to wean off steroids which i did totally by the Monday before the IPI start on Thursday.  Not sure what the 1/2 life is on Decadron. Only taking Kepra and the IPI people had no problem with that..

                                                  Did some more research, however, and only somewhat "proven" side effect that has corelated with Durable Response has been de-pigmentation of hair. (turning white)   Did this occur with you?  If so, how long after starting did your hair turn white?

                                                  Thanks, Grady from Cape Catfish.

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                                                  Vermont_Donna
                                                  Participant

                                                    Hi Grady,

                                                      I forgot to mention that after my first or second Ipi infusion my oncologist checked my skin with a blacklight and did see patches of white….vitigilio (spelling)…so this was the first thing noted. My hair has not turned white but I have only had 4 infusions.

                                                    Vermont_Donna, stage 3a

                                                    stable after 4 infusions of Ipi

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                                                    Vermont_Donna
                                                    Participant

                                                      Hi Grady,

                                                        I forgot to mention that after my first or second Ipi infusion my oncologist checked my skin with a blacklight and did see patches of white….vitigilio (spelling)…so this was the first thing noted. My hair has not turned white but I have only had 4 infusions.

                                                      Vermont_Donna, stage 3a

                                                      stable after 4 infusions of Ipi

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                                                      glewis923
                                                      Participant

                                                        Hello Jerry,

                                                        week 109 !!  I guess it must be working well, which is great.  Yeah, my radiologist MD told me to wean off steroids which i did totally by the Monday before the IPI start on Thursday.  Not sure what the 1/2 life is on Decadron. Only taking Kepra and the IPI people had no problem with that..

                                                        Did some more research, however, and only somewhat "proven" side effect that has corelated with Durable Response has been de-pigmentation of hair. (turning white)   Did this occur with you?  If so, how long after starting did your hair turn white?

                                                        Thanks, Grady from Cape Catfish.

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                                                      Jerry from Cape Cod
                                                      Participant

                                                        Hi Grady,

                                                        Just through week 109 of Ipi.  Side effects vary as well as how fast and long your body will respond to treatment.  My side effects have moderated, but still responding.

                                                         
                                                        At the first (3) week check my NP noticed a lacy rash.  I'd been itchy, but put it off to other sources.  I also have mild GI problems, thyroid problems, hair going white, vitilago.  I took just about everything possible for the rash.  I think I've just gotten so used to it that I take a couple of benedryl when it gets bad.  Much better than the cost of all the creams & lotions.

                                                        I'd be very careful of the steroids.  They will lessen some of the side effects, but they also moderate the immune system.  Your doctors will probably only give steroids for more severe side effects.

                                                        Some responders show side effects faster and more intense than others.  Generally most but not all really present some side effects.

                                                        Best wishes,

                                                        Jerry from Cape Cod

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                                                        Jim M.
                                                        Participant

                                                          I had 4 infusions of Ipi. I started having rash (didn't itch) several weeks into the first infusion. Shortly after that I had minor fatigue, minor pains in the stomach area. A later effect was a major chest pain in which I went to the ER. Also had minor headaches and another pain that went down my neck into the chest area. Two weeks before I was to get the 5th infusion I developed major headaches. An MRI showed my pituitary to be swollen. The pituitary gland eventually dropped to it's original size but Ipi had knocked out it's function. I've been on a steroid (as a hormone replacement) for over 2 years. My immune response was at least 5 times over baseline. Ipi didn't shrink any tumors as I began the trial with resected melanoma.

                                                          So your questions 2) and 3) are both yes.

                                                           God Bless,

                                                           Jim M.

                                                           Stage 3C

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                                                          Jim M.
                                                          Participant

                                                            I had 4 infusions of Ipi. I started having rash (didn't itch) several weeks into the first infusion. Shortly after that I had minor fatigue, minor pains in the stomach area. A later effect was a major chest pain in which I went to the ER. Also had minor headaches and another pain that went down my neck into the chest area. Two weeks before I was to get the 5th infusion I developed major headaches. An MRI showed my pituitary to be swollen. The pituitary gland eventually dropped to it's original size but Ipi had knocked out it's function. I've been on a steroid (as a hormone replacement) for over 2 years. My immune response was at least 5 times over baseline. Ipi didn't shrink any tumors as I began the trial with resected melanoma.

                                                            So your questions 2) and 3) are both yes.

                                                             God Bless,

                                                             Jim M.

                                                             Stage 3C

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                                                            Sharyn
                                                            Participant

                                                              Hi Grady,

                                                              I've done 4 infusions of ipi, and I didn't have any side effects whatsoever at any time. And I've responded really well. All my sub-qs are gone, and my lung met went from 5.5cm in Sept to 3.3cm in December. I have a CT scan tomorrow, and I'm expecting the lung met to be even smaller. I did, however, develop 2 more new brain mets. One was zapped with SRS, the other was excised last week (craniotomy). I'm hoping t o resume ipi in another week or so, and I'm hoping the brain treatment I've had recently takes care of the brain mets for good. Best of luck to you with your ipi treatments. I can't wait for it to be approved so more people can avail of it.

                                                              Hugs

                                                              Sharyn

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                                                              Sharyn
                                                              Participant

                                                                Hi Grady,

                                                                I've done 4 infusions of ipi, and I didn't have any side effects whatsoever at any time. And I've responded really well. All my sub-qs are gone, and my lung met went from 5.5cm in Sept to 3.3cm in December. I have a CT scan tomorrow, and I'm expecting the lung met to be even smaller. I did, however, develop 2 more new brain mets. One was zapped with SRS, the other was excised last week (craniotomy). I'm hoping t o resume ipi in another week or so, and I'm hoping the brain treatment I've had recently takes care of the brain mets for good. Best of luck to you with your ipi treatments. I can't wait for it to be approved so more people can avail of it.

                                                                Hugs

                                                                Sharyn

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