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Rollcall-Have you taken Yervoy/IPI & your results!!!

Forums General Melanoma Community Rollcall-Have you taken Yervoy/IPI & your results!!!

  • Post
    killmel
    Participant

    Hi Everyone.

    .

    Many MPIPERS have taken IPI over the years with various clinical trials. Now, the FDA has approved this drug, more people will have access to IPI.

    I thought it would be nice if we posted our experience with IPI and results on the drug. Some of us are just starting taking this drug like Jill & Eric,

    while others are in the middle of treatment, like Valin. Most importantly, are those who courageously finished treatment and have seen results like

    Hi Everyone.

    .

    Many MPIPERS have taken IPI over the years with various clinical trials. Now, the FDA has approved this drug, more people will have access to IPI.

    I thought it would be nice if we posted our experience with IPI and results on the drug. Some of us are just starting taking this drug like Jill & Eric,

    while others are in the middle of treatment, like Valin. Most importantly, are those who courageously finished treatment and have seen results like

    Donna fromVermont. If you got mixed results on IPI or no results, it is important to share your experience so other  can anticipate possible realistic

    outcomes on IPI.

     

    Please share your experience with IPI to give hope & encouragement for those who will be embarking on IPI treatment.

    Thank you for feedback.

    Douglas

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Viewing 35 reply threads
  • Replies
      Jerry from Cape Cod
      Participant

      Ipi Trial  w/ Brain Metsf 10mg/kilo

      Week 114

      Multiple brain mets now Brain Clear

      Multiple lung mets now Lungs Clear

      Left adreanal gland now clear

      small bowel met now clear

      Status No evidence of Melanoma.

      Required lung lobectomy due to damage from met (blocked airway) and swollen lymph nodes from resultant infection causing other lung problems.  Pathology all lymph nodes clear. Met showed clear evidence of necrosis and shrinkage (ie.  the ipi was working)

      Met in cervical spine required radiation prior to ipi due to immediate danger. Slowy regressing necrosis.

      most of the common side effects mild to moderate. No apparant dangerous side affects to date.

      Jerry from Cape Cod

       

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        Lori CO
        Participant

        Hi Jerry,

        Just caught your post about IPI. You rock!! Just curious, are you taking another drug combined with IPI, and if so, what is that drug? I'm not sure what the IPI "brain" trial is. How long did it take for the IPI to work on brain mets to keep them stable or shrink them? You've been on the trial for a number of months, could you please share a few details about when the brain mets started, what treatments you've had prior to IPI, any SRS, WBR, etc.?

        I've had two IPI infusions. I also have a very small inoperable tumor in the thalamus that I've had zapped with SRS. Not sure if it's tumor regrowth or radiation necrosis just yet. I'm wondering how fast IPI works if it's going to work in the brain. Your story is inspiring. Keep fighting!

        Lori

        Stage IV

        Grand Junction, CO

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        Lori CO
        Participant

        Hi Jerry,

        Just caught your post about IPI. You rock!! Just curious, are you taking another drug combined with IPI, and if so, what is that drug? I'm not sure what the IPI "brain" trial is. How long did it take for the IPI to work on brain mets to keep them stable or shrink them? You've been on the trial for a number of months, could you please share a few details about when the brain mets started, what treatments you've had prior to IPI, any SRS, WBR, etc.?

        I've had two IPI infusions. I also have a very small inoperable tumor in the thalamus that I've had zapped with SRS. Not sure if it's tumor regrowth or radiation necrosis just yet. I'm wondering how fast IPI works if it's going to work in the brain. Your story is inspiring. Keep fighting!

        Lori

        Stage IV

        Grand Junction, CO

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        dmk252003
        Participant

        Jerry

        Why did you have to have radiation in your cervical spine prior to ipi? My mom has a tumor in her lumbar spine and her oncologist wants to start yervoy on her next week

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        dmk252003
        Participant

        Jerry

        Why did you have to have radiation in your cervical spine prior to ipi? My mom has a tumor in her lumbar spine and her oncologist wants to start yervoy on her next week

        Loading spinner
        dmk252003
        Participant

        Jerry

        Why did you have to have radiation in your cervical spine prior to ipi? My mom has a tumor in her lumbar spine and her oncologist wants to start yervoy on her next week

        Loading spinner
      Jerry from Cape Cod
      Participant

      Ipi Trial  w/ Brain Metsf 10mg/kilo

      Week 114

      Multiple brain mets now Brain Clear

      Multiple lung mets now Lungs Clear

      Left adreanal gland now clear

      small bowel met now clear

      Status No evidence of Melanoma.

      Required lung lobectomy due to damage from met (blocked airway) and swollen lymph nodes from resultant infection causing other lung problems.  Pathology all lymph nodes clear. Met showed clear evidence of necrosis and shrinkage (ie.  the ipi was working)

      Met in cervical spine required radiation prior to ipi due to immediate danger. Slowy regressing necrosis.

      most of the common side effects mild to moderate. No apparant dangerous side affects to date.

      Jerry from Cape Cod

       

      Loading spinner
      sharmon
      Participant

      Hi everyone,

      Brent has had stage IV since May 09 in both lungs. 

      We wanted the ipi alone arm of a trial at Moffit and was given the randomization of ipi with the carbo/taxol arm  in 2009.  He was on the trial for 7 months when he progressed over the 20% allowed and as a result removed from the trial.  I believe if he were not given the chemp portion he would have done better.  Chemo just kicked his butt.  Fevers, weight lose, extreme fatique,dehydration, (no quality of life while on the trial). 

      I am wondering if there are any studies showing anyone on the carbo/taxol arm that  had any success?  It seemed to me that the ipi was trying to go in one direction and the chemo was going in a negative direction.

      Now that  ipi is approved and his tumors are growing once more after a year and half on MEK,.  if ipi would work as a single agent????

      Anyone with any thoughts.

       

       

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        Terra
        Participant

        Thank-you for posting this roll call and thank-you to those who reply – this will probably be Derek's next drug. 

         

        Terra

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        Terra
        Participant

        Thank-you for posting this roll call and thank-you to those who reply – this will probably be Derek's next drug. 

         

        Terra

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        killmel
        Participant

        PLease include any SIDE EFFECTS of IPI you  have had & how you managed the side effects! Also, did you get 3mg or 10 mg dosage.

        Thanks everyone for your post.

        Jerry mentioned side effects in his post and that was a good idea. Many people have a fear of the side effects after reading the FDA warnings of risks. How you handled your side effects and describing you side effects will help others.

        God bless you all

        Douglas

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        killmel
        Participant

        PLease include any SIDE EFFECTS of IPI you  have had & how you managed the side effects! Also, did you get 3mg or 10 mg dosage.

        Thanks everyone for your post.

        Jerry mentioned side effects in his post and that was a good idea. Many people have a fear of the side effects after reading the FDA warnings of risks. How you handled your side effects and describing you side effects will help others.

        God bless you all

        Douglas

        Loading spinner
        jhoey
        Participant

        I do not know how long iplimumab has been offered but feel extremly fortunate to have gotten into a clinical trial.  My first infussion of ipi was in May 09 the trial I am in has 3 arms we all received ipi.  One arm consisted of ipi alone . the other was with carbo/ taxol & ipi the 3rd an  older standard chemo drug with ipi sorry name I don"t remember.  The object of this study was to see if ipi worked better with other chemo drugs & how we tolerated them etc.

        I was in the arm that received carbo/ttaxol.  Aprox 10 days after first infusion I broke out in an extrem rash from head to toe, Red welts looked like the incredible hulk. But no itching.  It was determined I had a drug interaction with the taxol.  After a few days on predisone it all cleared up.  I continued in the trial but only with the ipi infusions alone.

        Two more infusions with no problem but after the third I developed another extreme rash but his one didnot looks as bad but ITCHED I had also been doing gardening without gloves so it may have been posin ivy by the time I did go back to oncl it was going away on its own without anything but bendryl & creams so no one was able to determine if it was from Ipi, poison ivy, or most likely the compo of both.  Therfore I skipped the final #4 infusion of ipi.

        After my scans in August  I asked Dr. Wolchock of SMK if I would have had a better responce if I had gotten the final dosage his reponce was " You had such a good responce its hard to imagine a better one".  By Dec I was hearing remission & then started to hear NED. 

        I continue with the maintance infusion & scans every 3 months.  wich is still a part of the clinical trial the infusion every three months is to continue till the desease progressed or forever if no progression.  Will see if this continues this way with the approval of Ipi.  Have contiued in remission or NED.  I have not had a serve rash again threw the maintance drug.  I do find my skin more dry this past winter then usual small price to pay.  Have never had any diarrah, fatigue or any other symptoms.

        A little background had melanoma on chin large excision in 8/07 all lymnodes & margins were clear was staged 2 only because it was over 1mm. No further treatment required.  Thought I was home free, then in March 09 after pet scan 2 small tumors were discovered 1 in each lung. just over 1 cm. each at largest. Needle biopsy done and determined to be melanoma not lung cancer.  Was & am in extreme good health whats a little cancer.  Was very lucky this showed up when it did, qualfied for the trial & have had such good sucess with ipi.  Hopefully this will continue, only time will tell.

        Started the clinincal Trial at Memorial Sloan in NYC under Dr. Jedd Wolchok who I can not speak more highly of. A true genious of a Dr. and a most pleasent wonderful man.  May we all be so fortunet to find such caring smart Drs. a rare combination.

        My best to all who have the good fortune to qualify for Ipi, may all have the sucess I have had & better.

        Janet

         

         

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        MDKate
        Participant

        Janet, so glad to hear  how well you are.  I too had ipi in Spring of 2012 at NYU, scans 12 weeks later showed some progression (mostly small sub cu's)  so in September was referred for Dr. Wolchok's PD 1 trials; idea is to give a boost to whatever benefits the ipi is delivering/could ultimately deliver. No rash (I had that with the ipi-like trial drug I'd done well on for six years at NYU before getting the ipi) but wish I didn't have these scalp bumps — harder to forget you have cancer when you can feel it every time you shampoo. Next scans in a few weeks and then we'll see we'll discuss whether to stick with this regimen or try something else.    

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        MDKate
        Participant

        Janet, so glad to hear  how well you are.  I too had ipi in Spring of 2012 at NYU, scans 12 weeks later showed some progression (mostly small sub cu's)  so in September was referred for Dr. Wolchok's PD 1 trials; idea is to give a boost to whatever benefits the ipi is delivering/could ultimately deliver. No rash (I had that with the ipi-like trial drug I'd done well on for six years at NYU before getting the ipi) but wish I didn't have these scalp bumps — harder to forget you have cancer when you can feel it every time you shampoo. Next scans in a few weeks and then we'll see we'll discuss whether to stick with this regimen or try something else.    

        Loading spinner
        MDKate
        Participant

        Janet, so glad to hear  how well you are.  I too had ipi in Spring of 2012 at NYU, scans 12 weeks later showed some progression (mostly small sub cu's)  so in September was referred for Dr. Wolchok's PD 1 trials; idea is to give a boost to whatever benefits the ipi is delivering/could ultimately deliver. No rash (I had that with the ipi-like trial drug I'd done well on for six years at NYU before getting the ipi) but wish I didn't have these scalp bumps — harder to forget you have cancer when you can feel it every time you shampoo. Next scans in a few weeks and then we'll see we'll discuss whether to stick with this regimen or try something else.    

        Loading spinner
        jhoey
        Participant

        I do not know how long iplimumab has been offered but feel extremly fortunate to have gotten into a clinical trial.  My first infussion of ipi was in May 09 the trial I am in has 3 arms we all received ipi.  One arm consisted of ipi alone . the other was with carbo/ taxol & ipi the 3rd an  older standard chemo drug with ipi sorry name I don"t remember.  The object of this study was to see if ipi worked better with other chemo drugs & how we tolerated them etc.

        I was in the arm that received carbo/ttaxol.  Aprox 10 days after first infusion I broke out in an extrem rash from head to toe, Red welts looked like the incredible hulk. But no itching.  It was determined I had a drug interaction with the taxol.  After a few days on predisone it all cleared up.  I continued in the trial but only with the ipi infusions alone.

        Two more infusions with no problem but after the third I developed another extreme rash but his one didnot looks as bad but ITCHED I had also been doing gardening without gloves so it may have been posin ivy by the time I did go back to oncl it was going away on its own without anything but bendryl & creams so no one was able to determine if it was from Ipi, poison ivy, or most likely the compo of both.  Therfore I skipped the final #4 infusion of ipi.

        After my scans in August  I asked Dr. Wolchock of SMK if I would have had a better responce if I had gotten the final dosage his reponce was " You had such a good responce its hard to imagine a better one".  By Dec I was hearing remission & then started to hear NED. 

        I continue with the maintance infusion & scans every 3 months.  wich is still a part of the clinical trial the infusion every three months is to continue till the desease progressed or forever if no progression.  Will see if this continues this way with the approval of Ipi.  Have contiued in remission or NED.  I have not had a serve rash again threw the maintance drug.  I do find my skin more dry this past winter then usual small price to pay.  Have never had any diarrah, fatigue or any other symptoms.

        A little background had melanoma on chin large excision in 8/07 all lymnodes & margins were clear was staged 2 only because it was over 1mm. No further treatment required.  Thought I was home free, then in March 09 after pet scan 2 small tumors were discovered 1 in each lung. just over 1 cm. each at largest. Needle biopsy done and determined to be melanoma not lung cancer.  Was & am in extreme good health whats a little cancer.  Was very lucky this showed up when it did, qualfied for the trial & have had such good sucess with ipi.  Hopefully this will continue, only time will tell.

        Started the clinincal Trial at Memorial Sloan in NYC under Dr. Jedd Wolchok who I can not speak more highly of. A true genious of a Dr. and a most pleasent wonderful man.  May we all be so fortunet to find such caring smart Drs. a rare combination.

        My best to all who have the good fortune to qualify for Ipi, may all have the sucess I have had & better.

        Janet

         

         

        Loading spinner
      sharmon
      Participant

      Hi everyone,

      Brent has had stage IV since May 09 in both lungs. 

      We wanted the ipi alone arm of a trial at Moffit and was given the randomization of ipi with the carbo/taxol arm  in 2009.  He was on the trial for 7 months when he progressed over the 20% allowed and as a result removed from the trial.  I believe if he were not given the chemp portion he would have done better.  Chemo just kicked his butt.  Fevers, weight lose, extreme fatique,dehydration, (no quality of life while on the trial). 

      I am wondering if there are any studies showing anyone on the carbo/taxol arm that  had any success?  It seemed to me that the ipi was trying to go in one direction and the chemo was going in a negative direction.

      Now that  ipi is approved and his tumors are growing once more after a year and half on MEK,.  if ipi would work as a single agent????

      Anyone with any thoughts.

       

       

      Loading spinner
      killmel
      Participant

      Douglas,

       

      Great idea to post other to share experiences with IPI. I hope that others will take the time to tell their experience with IPI .It is so important to support each other. Explaining the good & bad of IPI give people hope & understanding of the side effects & outcomes of using IPI.

       

      Pam

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      killmel
      Participant

      Douglas,

       

      Great idea to post other to share experiences with IPI. I hope that others will take the time to tell their experience with IPI .It is so important to support each other. Explaining the good & bad of IPI give people hope & understanding of the side effects & outcomes of using IPI.

       

      Pam

      Loading spinner
        Vermont_Donna
        Participant

        Hi,

        I am stage 3a and have had many treatments, prior to Ipi. I have been stage 3a for almost 5 years, and have had melanoma only in my right leg. I started Ipi on December 1, 2010, as part of a clinical trial (there was no other arm and I knew I was getting the Ipi). By December 2010 I had new melanoma tumors popping up almost daily, so during the first three treatments (ie over the first 9 weeks) I had many new spots totaling about 50 to 60 individual tumors, some the size of a pencil eraser, some smaller, all purplish or flesh color, some sub q's, some were "popped up" nodules. Some were clustered, especially around my knee and inside of my thigh/knee. The sub q's were painful to the touch and  were all on my thigh. It was scary as they were multiplying all over my leg, and three were closer to my groin, the closest to my groin yet. My melanoma oncologist saw my alarm but said that new tumors growing during the first 12 weeks of the trial, was "acceptable". While we didnt like it, we at least knew BMS wasnt going to kick me out of the trial. My oncologist took leg pictures every visit. Around the third treatment, 3mg/kg by the way, I noticed one small tumor on my knee had crusted over and then over the next several days to a week, it flaked off and grew smaller. I was pumped!! Then the rest of my tumors one by one started re-absorbing…thats the best word I can use. By treatment 4, I was seeing definite changes, many tumors were getting smaller. My oncologist looked at my skin with a black light the first visit….at my face and chest and neck…he believed he saw white patches on my skin or a "whitening"…vitiligo is what this is called…the same disease Michael Jackson had he told me. This is a sign that my body was reacting to the Ipi. I never could see the whitening myself.

        Two weeks after my fourth treatment the clinical trial required a PET/CT scan, labs, doctor visit. My oncolgist came in to see me and say hello, but explained the melanoma oncology nurse practitioner who I have seen many times over the last 4.5 years was scheduled to see me that day. I said to him "You are going to want to come see my leg when I am undressed…ALL MY TUMORS ARE GONE!!!!!".He was so excited and left the room so I could change and then in 5 minutes he and the nurse practitioner came in and were checking me over and were both ecstatic as my mom and I were!!! My PET/CT showed inflammation in all my melanoma spots and also some uptake in the external iliac nodes, but he read the scans as negative but documenting that the melanoma was most likely reacting to the Ipi. To date I have had NO signs of return of any melanoma to my leg and I have scans, labs, and another doctors appointment 5/11. I know at that time that we will talk about whether I will go for another round of 4 treatments, 3mg/kg, three weeks apart. The clinical trial I was in is over as I talked the the clincal trial coordinator. She seemed to think that as long as I am a "responder" that I can opt to do the 12 weeks on 12 weeks off cycle, for how long we dont know. And at what cost? We dont know, but she did mention "Destination Access" . I do have private insurance through COBRA and medicare however. for a few more weeks, my skin remained purplish where each melanoma tumor was  but eventually that faded and i can not see any spot at all where any melanoma was. I am so excited. Leg amputation was a strong option my melanoma oncologist and melanoma oncology surgeon wanted me to consider before we decided to try Ipi.

        As far as side effects——-I was more fatigued and had some nausea. The bouts of nausea were about once a week, and were intense…but I would take compazine and if it wasnt better in about 2 hours I would take Zofran. The nausea was intense enough that I could only sit or lie down, any other movement was difficult and I would have vomited. The oncology staff said out of the 15 they currently had in the Ipi trial with me, I was the only one who complained of nausea. I did resign my work in early December. I work as a licensed clinical social worker and my job involved traveling to three schools and seeing kids for therapy, doing crisis intervention, hospitalizing kids, doing emergency mental health work, etc. I have two unhealed leg wounds and I am on narcotics every three hours for the pain (for 10.5 months now). I had two re-occurences of melanoma since my return to work in 4/10, and did 6 weeks of radiation treatments over the summer, which failed. I never missed one day of work.  I decided enough was enough and I needed to not work and take care of me.  I could nap when I felt tired and sit when I felt nauseas…not just push myself to work. I probably could have kept working but I felt I would not be taking care of me, as I would never let my work be compromised in any way. I did develop a slight all over body rash about two to four weeks after the fourth Ipi infusion, which DID NOT itch and which caused me no discomfort. It went away on its own. That's it for side effects. Very manageable!

        So that is my Ipi story so far. I am sorry this is so long but I feel that my story gives you all a sense of what was going on and how Ipi affected me. To me it is a God send. I truly felt that stage 4 melanoma cancer was in the cards for me a few months ago. Now I have hope that I will be around to see my new grandbaby (due anyday) grow up, and to see my other children go out on their own, marry and start families. I have two in college and three on their own. Yay for ipilimumab!!!

        Vermont_Donna, stage 3a

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        Vermont_Donna
        Participant

        Hi,

        I am stage 3a and have had many treatments, prior to Ipi. I have been stage 3a for almost 5 years, and have had melanoma only in my right leg. I started Ipi on December 1, 2010, as part of a clinical trial (there was no other arm and I knew I was getting the Ipi). By December 2010 I had new melanoma tumors popping up almost daily, so during the first three treatments (ie over the first 9 weeks) I had many new spots totaling about 50 to 60 individual tumors, some the size of a pencil eraser, some smaller, all purplish or flesh color, some sub q's, some were "popped up" nodules. Some were clustered, especially around my knee and inside of my thigh/knee. The sub q's were painful to the touch and  were all on my thigh. It was scary as they were multiplying all over my leg, and three were closer to my groin, the closest to my groin yet. My melanoma oncologist saw my alarm but said that new tumors growing during the first 12 weeks of the trial, was "acceptable". While we didnt like it, we at least knew BMS wasnt going to kick me out of the trial. My oncologist took leg pictures every visit. Around the third treatment, 3mg/kg by the way, I noticed one small tumor on my knee had crusted over and then over the next several days to a week, it flaked off and grew smaller. I was pumped!! Then the rest of my tumors one by one started re-absorbing…thats the best word I can use. By treatment 4, I was seeing definite changes, many tumors were getting smaller. My oncologist looked at my skin with a black light the first visit….at my face and chest and neck…he believed he saw white patches on my skin or a "whitening"…vitiligo is what this is called…the same disease Michael Jackson had he told me. This is a sign that my body was reacting to the Ipi. I never could see the whitening myself.

        Two weeks after my fourth treatment the clinical trial required a PET/CT scan, labs, doctor visit. My oncolgist came in to see me and say hello, but explained the melanoma oncology nurse practitioner who I have seen many times over the last 4.5 years was scheduled to see me that day. I said to him "You are going to want to come see my leg when I am undressed…ALL MY TUMORS ARE GONE!!!!!".He was so excited and left the room so I could change and then in 5 minutes he and the nurse practitioner came in and were checking me over and were both ecstatic as my mom and I were!!! My PET/CT showed inflammation in all my melanoma spots and also some uptake in the external iliac nodes, but he read the scans as negative but documenting that the melanoma was most likely reacting to the Ipi. To date I have had NO signs of return of any melanoma to my leg and I have scans, labs, and another doctors appointment 5/11. I know at that time that we will talk about whether I will go for another round of 4 treatments, 3mg/kg, three weeks apart. The clinical trial I was in is over as I talked the the clincal trial coordinator. She seemed to think that as long as I am a "responder" that I can opt to do the 12 weeks on 12 weeks off cycle, for how long we dont know. And at what cost? We dont know, but she did mention "Destination Access" . I do have private insurance through COBRA and medicare however. for a few more weeks, my skin remained purplish where each melanoma tumor was  but eventually that faded and i can not see any spot at all where any melanoma was. I am so excited. Leg amputation was a strong option my melanoma oncologist and melanoma oncology surgeon wanted me to consider before we decided to try Ipi.

        As far as side effects——-I was more fatigued and had some nausea. The bouts of nausea were about once a week, and were intense…but I would take compazine and if it wasnt better in about 2 hours I would take Zofran. The nausea was intense enough that I could only sit or lie down, any other movement was difficult and I would have vomited. The oncology staff said out of the 15 they currently had in the Ipi trial with me, I was the only one who complained of nausea. I did resign my work in early December. I work as a licensed clinical social worker and my job involved traveling to three schools and seeing kids for therapy, doing crisis intervention, hospitalizing kids, doing emergency mental health work, etc. I have two unhealed leg wounds and I am on narcotics every three hours for the pain (for 10.5 months now). I had two re-occurences of melanoma since my return to work in 4/10, and did 6 weeks of radiation treatments over the summer, which failed. I never missed one day of work.  I decided enough was enough and I needed to not work and take care of me.  I could nap when I felt tired and sit when I felt nauseas…not just push myself to work. I probably could have kept working but I felt I would not be taking care of me, as I would never let my work be compromised in any way. I did develop a slight all over body rash about two to four weeks after the fourth Ipi infusion, which DID NOT itch and which caused me no discomfort. It went away on its own. That's it for side effects. Very manageable!

        So that is my Ipi story so far. I am sorry this is so long but I feel that my story gives you all a sense of what was going on and how Ipi affected me. To me it is a God send. I truly felt that stage 4 melanoma cancer was in the cards for me a few months ago. Now I have hope that I will be around to see my new grandbaby (due anyday) grow up, and to see my other children go out on their own, marry and start families. I have two in college and three on their own. Yay for ipilimumab!!!

        Vermont_Donna, stage 3a

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        killmel
        Participant

        Donna..fabulous story…gives us all hope.

        How long did it take for your sub q's (what size) to disappear?

        Thanks Douglas

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        killmel
        Participant

        Donna..fabulous story…gives us all hope.

        How long did it take for your sub q's (what size) to disappear?

        Thanks Douglas

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        Vermont_Donna
        Participant

        Hi,

          the sub q's were the size of a quarter and thick…I had three or four of them…they reabsorbed within a couple of weeks, but remained purplish on top of the skin longer than the other cutaneous tumors….so maybe two to three weeks…they might have gotton a little bigger before they went away also…

        Vermont_Donna

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        Vermont_Donna
        Participant

        Hi,

          the sub q's were the size of a quarter and thick…I had three or four of them…they reabsorbed within a couple of weeks, but remained purplish on top of the skin longer than the other cutaneous tumors….so maybe two to three weeks…they might have gotton a little bigger before they went away also…

        Vermont_Donna

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        ValinMtl
        Participant

        Wow, Donna, I didn't know your sub-qs only reacted after 3rd treatment…maybe there is some hope for me.  Val xx

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        ValinMtl
        Participant

        Wow, Donna, I didn't know your sub-qs only reacted after 3rd treatment…maybe there is some hope for me.  Val xx

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      Jerry from Cape Cod
      Participant

      Side Effects

      I get a bit of a chuckle with all the concern about the side effects of IPI.  If you take the time to read the actual reports and warnings you will notice that the really bad side effects are in the very low categories.  Also, you MUST take into consideration  that the participants in the trials were not necessarily in the best physical condition to start with due to the ravages, etc.  So the chances of significant side effects increases with the bad physical condition

      Also, I guess you have to be there and have a very well trained professional say "You have x months with whats availabe" and maybe this "somewhat standard" treatment may help you but it's going to beat the holy crap out of you." The alternative is this other treatment and you're given a thick pile of papers with the details and the warnings.

      Take a guess how long I spent worrying about side effects?  About as long as a "New York Minute"?

      All of the common side effects are either managable or treatable and the drug doesn't have to near kill me before bringing me back?

      I have a friend who had two treatments about 2 years ago. He had to go off of ipi and onto a feeding tube for a month.  Today he's back to work,exercises moderately, loves life.  His tumors continue to regress without any other treatment.

      I had an option to stop treatment when I went NEM, but I'm in it for the ride.  The side effects do affect my life a bit,. I'm a bit more fatigued,  I hate the rash.  I don't particularly like the white beard,(but it gets alot of attention from the fair sex).  The thyroid replacement and testostorone therapy seem to be working okay.

      The treatment centers build a safety net around you.  They don't want the treatments to cause harm to you and yes you have to medically qualify because some of the side effects could effect those with certain conditions more severly.

      Do nothing I"m dead or Do this treatment and I may live longer, oh but I have a 1% chance of this or that.   I'll take the 1% chances any day of the week when the chances of dying within a certain time are 100%. 

      The day I signed the consent form my wife asked my doctor how the ipi was working.  He said we have some patients now out to the 48th week.  That's all we needed to hear.

      I don't know how long this train is running but I'm on it until the end

      Jerry from Cape Cod

      Stage IV, NEM IPI Brain Trial week 114

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      Jerry from Cape Cod
      Participant

      Side Effects

      I get a bit of a chuckle with all the concern about the side effects of IPI.  If you take the time to read the actual reports and warnings you will notice that the really bad side effects are in the very low categories.  Also, you MUST take into consideration  that the participants in the trials were not necessarily in the best physical condition to start with due to the ravages, etc.  So the chances of significant side effects increases with the bad physical condition

      Also, I guess you have to be there and have a very well trained professional say "You have x months with whats availabe" and maybe this "somewhat standard" treatment may help you but it's going to beat the holy crap out of you." The alternative is this other treatment and you're given a thick pile of papers with the details and the warnings.

      Take a guess how long I spent worrying about side effects?  About as long as a "New York Minute"?

      All of the common side effects are either managable or treatable and the drug doesn't have to near kill me before bringing me back?

      I have a friend who had two treatments about 2 years ago. He had to go off of ipi and onto a feeding tube for a month.  Today he's back to work,exercises moderately, loves life.  His tumors continue to regress without any other treatment.

      I had an option to stop treatment when I went NEM, but I'm in it for the ride.  The side effects do affect my life a bit,. I'm a bit more fatigued,  I hate the rash.  I don't particularly like the white beard,(but it gets alot of attention from the fair sex).  The thyroid replacement and testostorone therapy seem to be working okay.

      The treatment centers build a safety net around you.  They don't want the treatments to cause harm to you and yes you have to medically qualify because some of the side effects could effect those with certain conditions more severly.

      Do nothing I"m dead or Do this treatment and I may live longer, oh but I have a 1% chance of this or that.   I'll take the 1% chances any day of the week when the chances of dying within a certain time are 100%. 

      The day I signed the consent form my wife asked my doctor how the ipi was working.  He said we have some patients now out to the 48th week.  That's all we needed to hear.

      I don't know how long this train is running but I'm on it until the end

      Jerry from Cape Cod

      Stage IV, NEM IPI Brain Trial week 114

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        killmel
        Participant

        Hi Jerry,

         

        Your post was inspirational…you have have a great way of stating the "facts"

        You mentioned: "I had an option to stop treatment when I went NEM, but I'm in it for the ride.  The side effects do affect my life a bit,. I'm a bit more fatigued,  I hate the rash. "

        I am still trying to understand IPI, if you have time I have a few questions?

        How many treatments have you had of IPI and what MG. How many cycle have you had?

        I am assuming you have four tranfusions in a cycle, then you wait 12 weeks?? When does the rash show up & does any medication/cream help? Does the rash ever go away once off IPI??

        What was the largest size tumor did IPI get rid of??

        Thanks,

        Douglas

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        killmel
        Participant

        Hi Jerry,

         

        Your post was inspirational…you have have a great way of stating the "facts"

        You mentioned: "I had an option to stop treatment when I went NEM, but I'm in it for the ride.  The side effects do affect my life a bit,. I'm a bit more fatigued,  I hate the rash. "

        I am still trying to understand IPI, if you have time I have a few questions?

        How many treatments have you had of IPI and what MG. How many cycle have you had?

        I am assuming you have four tranfusions in a cycle, then you wait 12 weeks?? When does the rash show up & does any medication/cream help? Does the rash ever go away once off IPI??

        What was the largest size tumor did IPI get rid of??

        Thanks,

        Douglas

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        Jerry from Cape Cod
        Participant

        Douglas,

        I'm in the "Brain" ipi trial.  10 mg/kilo of body weight. 

        Treatments week 1, 3, 7 &10 then if no progression to week 24 and every 12 weeks after. There is only one treatment on the 12 week maintenance not a cycle of 4.  Thus for the year of 2010 I had a treatment every 3 months or 4 for the year.  I could figure out how many infusions for the 114 week period so far, but it's really not important.

        As my doctors have said they don't know "how much" is the right amount.  You will note many have had as few as one or two treatments, not "cycles" and they have continue with durable response.  There is strong evidence that I could stop the treatments now and continue on my response.  There is also a chance that the bastard mel makes a chemical change that my immune system can't handle or that my immune system just stops attacking the mel.  Whatever happens I think the "human lab rat" is an important part of paying it forward. 

        Mederex now owned by BMS made a commitment to me in the beginning so I decided that I would stay the course as long as I remain a responder and they offer the treatment.  I figure that it's important to gather information on how an individual handles the treatment long term. 

        My doctors coached me that tumor size wasn't really the important test of the treatment it was the tumor load.  In my case I had 6 large measurable leisons in my brain with a large number of floating "cells" in my CNS. One in each lung, One nasty bastard in my cervicle spine, one on my left adreanal gland and one on my small bowel.  As of nearly 6 months ago they majority were gone with just a problem child in the left lower lobe of my lung. 

        It required a lobectomy due to damage done to the airway.  Pathology proved that the mass was mostly necrosis and the malignancy was showing signs of dying. 

        There is still a lot to be learned by the researchers on what & when is enough.  I think one of the critical questions in front of ipi researchers is how to find a test or indicator of what patients have a better chance of responding. 

        Also, I spent MONTHS being basically STABLE… STABLE IS A GOOD THING!!!!! 

        I know that there is a chance that my next scans may show other problems arising, but I'm already 2 years past my expiration date (thank you DebbieVA for the term) so I go with what I know.  I can't fret over what MAY happen with the mel or side effects. I'll fight that battle if it shows up on my doorstep.

        I guess the bottom line is don't get bogged down in the little details and the numbers as it varies so much from person to person.  It's not like radiation where you can predict reactions to various levels of treatment.

        Getting back to the side effects for a minute.  It's my understanding that BMS is being very cautious in the rollout and will initially only distribute Yervoy to treatment centers that have experience with IPI through trials.  This will help the keep a closer watch on the partcipant.

        Jerry from Cape Cod

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        Jerry from Cape Cod
        Participant

        Douglas,

        I'm in the "Brain" ipi trial.  10 mg/kilo of body weight. 

        Treatments week 1, 3, 7 &10 then if no progression to week 24 and every 12 weeks after. There is only one treatment on the 12 week maintenance not a cycle of 4.  Thus for the year of 2010 I had a treatment every 3 months or 4 for the year.  I could figure out how many infusions for the 114 week period so far, but it's really not important.

        As my doctors have said they don't know "how much" is the right amount.  You will note many have had as few as one or two treatments, not "cycles" and they have continue with durable response.  There is strong evidence that I could stop the treatments now and continue on my response.  There is also a chance that the bastard mel makes a chemical change that my immune system can't handle or that my immune system just stops attacking the mel.  Whatever happens I think the "human lab rat" is an important part of paying it forward. 

        Mederex now owned by BMS made a commitment to me in the beginning so I decided that I would stay the course as long as I remain a responder and they offer the treatment.  I figure that it's important to gather information on how an individual handles the treatment long term. 

        My doctors coached me that tumor size wasn't really the important test of the treatment it was the tumor load.  In my case I had 6 large measurable leisons in my brain with a large number of floating "cells" in my CNS. One in each lung, One nasty bastard in my cervicle spine, one on my left adreanal gland and one on my small bowel.  As of nearly 6 months ago they majority were gone with just a problem child in the left lower lobe of my lung. 

        It required a lobectomy due to damage done to the airway.  Pathology proved that the mass was mostly necrosis and the malignancy was showing signs of dying. 

        There is still a lot to be learned by the researchers on what & when is enough.  I think one of the critical questions in front of ipi researchers is how to find a test or indicator of what patients have a better chance of responding. 

        Also, I spent MONTHS being basically STABLE… STABLE IS A GOOD THING!!!!! 

        I know that there is a chance that my next scans may show other problems arising, but I'm already 2 years past my expiration date (thank you DebbieVA for the term) so I go with what I know.  I can't fret over what MAY happen with the mel or side effects. I'll fight that battle if it shows up on my doorstep.

        I guess the bottom line is don't get bogged down in the little details and the numbers as it varies so much from person to person.  It's not like radiation where you can predict reactions to various levels of treatment.

        Getting back to the side effects for a minute.  It's my understanding that BMS is being very cautious in the rollout and will initially only distribute Yervoy to treatment centers that have experience with IPI through trials.  This will help the keep a closer watch on the partcipant.

        Jerry from Cape Cod

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      swissie
      Participant

      Great idea Douglas.

      I am stage IIIB since July 2009.

      I am / was on a double blind ipi trial with 10 mg/kg.

      After my 4th infusion I had a colitis, so I knew I was receiving the medication.
      The colitis was terrible for one night (of course it started on Friday evening late, and I did not want to run to a hospital in the middle of the night with a 3 year old). It was over very quickly after steroids.
       

      Since I started I had headaches, itching, a funny Beau's line on my toe nales, a colitis (after 4th infusion; minimum grade 3) and a terrible rash  (a week BEFORE my 8th! infusion; minimum grade 3).
      My doctor does not believe the rash was ipi related, but for me it looks exactly the same as some examples I saw in recent articles on CTLA-4 side effects.
      Also I have a Barret Espohagus, which again is a coincidence according to my doctor (although I never experienced heartburn of reflux before my trial, and although anti-reflux medication doesn't seem to work).

      I have been tired from the beginning, but after my 8th infusion I have been exhausted.
      It was (is) getting in the way of my normal way of living and I hate it. As I had the feeling it was increasing exponential, I decided to end the trial.
      So far my scans are okay, but the last scan showed an enlarged spleen. I only realised this after I came home (without the 9th infusion).

      I would make the same choise. The only thing I don't like is the fact that I have the feeling my doctors are not always 100% with me. They say a rash is a coincidence, even though I recognize the rash in a ipi article.
      Also now with this enlarged spleen, they did not tell me anything about it. I read it in the scan-results!
      I'm up for my next scan in 1.5 week, hoping to see that spleen back at it's normal size!

      Swissie

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      swissie
      Participant

      Great idea Douglas.

      I am stage IIIB since July 2009.

      I am / was on a double blind ipi trial with 10 mg/kg.

      After my 4th infusion I had a colitis, so I knew I was receiving the medication.
      The colitis was terrible for one night (of course it started on Friday evening late, and I did not want to run to a hospital in the middle of the night with a 3 year old). It was over very quickly after steroids.
       

      Since I started I had headaches, itching, a funny Beau's line on my toe nales, a colitis (after 4th infusion; minimum grade 3) and a terrible rash  (a week BEFORE my 8th! infusion; minimum grade 3).
      My doctor does not believe the rash was ipi related, but for me it looks exactly the same as some examples I saw in recent articles on CTLA-4 side effects.
      Also I have a Barret Espohagus, which again is a coincidence according to my doctor (although I never experienced heartburn of reflux before my trial, and although anti-reflux medication doesn't seem to work).

      I have been tired from the beginning, but after my 8th infusion I have been exhausted.
      It was (is) getting in the way of my normal way of living and I hate it. As I had the feeling it was increasing exponential, I decided to end the trial.
      So far my scans are okay, but the last scan showed an enlarged spleen. I only realised this after I came home (without the 9th infusion).

      I would make the same choise. The only thing I don't like is the fact that I have the feeling my doctors are not always 100% with me. They say a rash is a coincidence, even though I recognize the rash in a ipi article.
      Also now with this enlarged spleen, they did not tell me anything about it. I read it in the scan-results!
      I'm up for my next scan in 1.5 week, hoping to see that spleen back at it's normal size!

      Swissie

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        killmel
        Participant

        Swissie,

        Thanks for your post.

        For what is worth, I think that I remember enlarged spleen is a side effect of IPI? Is there ary medical implications with an enlarged spleen?

        Now that you are off IPI, have all your side effects gone away? Are you NED?? Did IPI shrink or get rid of any of your tumors?

        Wishing you luck with your next scans.

        Douglas

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        killmel
        Participant

        Swissie,

        Thanks for your post.

        For what is worth, I think that I remember enlarged spleen is a side effect of IPI? Is there ary medical implications with an enlarged spleen?

        Now that you are off IPI, have all your side effects gone away? Are you NED?? Did IPI shrink or get rid of any of your tumors?

        Wishing you luck with your next scans.

        Douglas

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      nicoli
      Participant

      How is ipi administered? Pill, iv, what?

      Does anyone know if Medicaid will cover it now that it is approved?

      Nicki, Stage 3b

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        Jerry from Cape Cod
        Participant

        IV infusion over 90 minutes with 90 minute observation for complications.  dose/frequency changes have been tested in numerous trials.  I have not heard what the "recommended" frequency will be for those who will recieve it via prescription now that it has FDA approval

        Jerry from Cape Cod

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        MaryBeth and Jeff
        Participant

        IV infusion 90 minutes with 90 min observation. Frequency 4 treatments every 3 weeks.
         

        MaryBeth from Virginia

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        MaryBeth and Jeff
        Participant

        IV infusion 90 minutes with 90 min observation. Frequency 4 treatments every 3 weeks.
         

        MaryBeth from Virginia

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        Jerry from Cape Cod
        Participant

        IV infusion over 90 minutes with 90 minute observation for complications.  dose/frequency changes have been tested in numerous trials.  I have not heard what the "recommended" frequency will be for those who will recieve it via prescription now that it has FDA approval

        Jerry from Cape Cod

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      nicoli
      Participant

      How is ipi administered? Pill, iv, what?

      Does anyone know if Medicaid will cover it now that it is approved?

      Nicki, Stage 3b

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      ValinMtl
      Participant

      Hi Doug,

      Well, here's my experience with ipi.  Noticed cutaneous mel starting about March 2010 after surgery and serious radiation in January..had had a second recurrence earlier.  Waiting for clinical compassionate ipilimumab trial to come to Montreal was a long process.  Finally, arrived in September and I was first on trial.  By that point, I had 100s of small cutaneous spots all over my entire right leg.  As well, according to doctors necrosis had set in…I wasn't doing so well. 

      Started ipilimumab and a miracle occurred almost immediately with first treatment (I was to have four at 3 mg.)  The cutaneous spots starting drying up and my leg was slowly looking better.  By end of October, my very serious oncologist actually congratulated me..we thought we had conquered.  Necrosis was decreasing as well.

      My scan in late November showed 30% decrease of right external ilac lymph node.  Two other non-measurable lymph nodes showed also decrease in size.  HOWEVER disease progression accordng to recist criteria with more than 20% increase in left inguinal region lymph node.  So that wasn't expected!  They think it might have metacized although it could be a swollen node from ipi. 

      My next scan in February 2010 showed no abnormalities in organs (praise God) but once again that left inguinal increased from 2.6 x 3 cm to 4.3 x 6.1 cm.  I now have sub-qs which I never had popping up on my leg…three very large ones and several pea-size ones. 

      I was so certain I would be kicked off the trial but perhaps because of the increases, however, I was offered another chance at ipilimumab.  I believe the significant decreases helped counterbalance.  I have now had my 2nd treament of round 2…two more to go.  I'm not as upbeat as the first time, I have not seen any improvement – although you never know.  So I have to consider another option…if I can get on IL-2, that's what I will do, unfortunately, it's a two-arm trial with dicarbazine.

      As far as side effects, wow…very little in comparison to interferon. Every now and then, I would need some immodium as a preventative measure, I felt tired from time to time but not that much. I did feel a little nauseous at my first treatment of round 2.  My hair is rather dry and I believe that is from the treatments too.

      Would I do it again…You betcha….I believe last August/September, without drugs I was walking a very fine line and, here it is, April and I'm still here although still fighting the battle.  

      Val

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        killmel
        Participant

        Hi Val,

        Thanks so much for sharing.

        You mentioned:   I now have sub-qs which I never had popping up on my leg…three very large ones and several pea-size ones.

        Does your Doc give you any explaination why these would pop up after taking IPI…perhaps IPI & your immune system will still take care of these suckers.

        Goodluch with your scans…please keep us posted.

        Douglas

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        ValinMtl
        Participant

        Hi Douglas,

        No the oncologist did not say why they are popping up now..l really don't think he knows why either.  BUT my leg was in very bad shape to start and the necrosis had made my leg purple…a lot has faded but there is still some problem areas and that is where for some reason most of sub-qs are cropping up PLUS the biggest worry is the left lymph node.  I wish I could say my immune system is great but I have had three major colds this winter…just finishing (I hope) this last one..over two weeks…this all worries me too.  But I hope ipi kicks in again, if not, alas I have to try the two-arm Dicarbazine vs IL 2 if it's still available (that's a worry too).  Val

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        ValinMtl
        Participant

        Hi Douglas,

        No the oncologist did not say why they are popping up now..l really don't think he knows why either.  BUT my leg was in very bad shape to start and the necrosis had made my leg purple…a lot has faded but there is still some problem areas and that is where for some reason most of sub-qs are cropping up PLUS the biggest worry is the left lymph node.  I wish I could say my immune system is great but I have had three major colds this winter…just finishing (I hope) this last one..over two weeks…this all worries me too.  But I hope ipi kicks in again, if not, alas I have to try the two-arm Dicarbazine vs IL 2 if it's still available (that's a worry too).  Val

        Loading spinner
        killmel
        Participant

        Hi Val,

        Thanks so much for sharing.

        You mentioned:   I now have sub-qs which I never had popping up on my leg…three very large ones and several pea-size ones.

        Does your Doc give you any explaination why these would pop up after taking IPI…perhaps IPI & your immune system will still take care of these suckers.

        Goodluch with your scans…please keep us posted.

        Douglas

        Loading spinner
      ValinMtl
      Participant

      Hi Doug,

      Well, here's my experience with ipi.  Noticed cutaneous mel starting about March 2010 after surgery and serious radiation in January..had had a second recurrence earlier.  Waiting for clinical compassionate ipilimumab trial to come to Montreal was a long process.  Finally, arrived in September and I was first on trial.  By that point, I had 100s of small cutaneous spots all over my entire right leg.  As well, according to doctors necrosis had set in…I wasn't doing so well. 

      Started ipilimumab and a miracle occurred almost immediately with first treatment (I was to have four at 3 mg.)  The cutaneous spots starting drying up and my leg was slowly looking better.  By end of October, my very serious oncologist actually congratulated me..we thought we had conquered.  Necrosis was decreasing as well.

      My scan in late November showed 30% decrease of right external ilac lymph node.  Two other non-measurable lymph nodes showed also decrease in size.  HOWEVER disease progression accordng to recist criteria with more than 20% increase in left inguinal region lymph node.  So that wasn't expected!  They think it might have metacized although it could be a swollen node from ipi. 

      My next scan in February 2010 showed no abnormalities in organs (praise God) but once again that left inguinal increased from 2.6 x 3 cm to 4.3 x 6.1 cm.  I now have sub-qs which I never had popping up on my leg…three very large ones and several pea-size ones. 

      I was so certain I would be kicked off the trial but perhaps because of the increases, however, I was offered another chance at ipilimumab.  I believe the significant decreases helped counterbalance.  I have now had my 2nd treament of round 2…two more to go.  I'm not as upbeat as the first time, I have not seen any improvement – although you never know.  So I have to consider another option…if I can get on IL-2, that's what I will do, unfortunately, it's a two-arm trial with dicarbazine.

      As far as side effects, wow…very little in comparison to interferon. Every now and then, I would need some immodium as a preventative measure, I felt tired from time to time but not that much. I did feel a little nauseous at my first treatment of round 2.  My hair is rather dry and I believe that is from the treatments too.

      Would I do it again…You betcha….I believe last August/September, without drugs I was walking a very fine line and, here it is, April and I'm still here although still fighting the battle.  

      Val

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      Bruce in NH
      Participant

      Here is my ipi story. Started the 10 week cycle last summer – had a lot of diarrhea and fatigue initially but nothing compared to IL2 or biochemo therapies (over 30 hospital days in 2009). Three target tumors located in center chest, left lung and left chest wall that have been there since Dec. 2008. Dose was 3mg/kilo. Had PET scans in November, nodes were stable. Had follow-up PET scans in February; noted that chest wall node grew 50% since February and created a new adjacent hot spot. Decision to start second 10 week cycle in March; just completed the third infusion on 4/14. Still minimal side effects, nagging sinus drainage not sure if due to ipi or several colds this past winter. Some slight rash and fatigue, probably enhanced by the glass of wine I won't give up at dinnertime. You have to live too! Otherwise doing great and hoping for success in late May scans. May opt for surgery on the chest wall nodes as they are accessible; not so with the other two buried in the chest – hence the systemic ipi treatment. Still very happy I chose this program and even happier for all those of you who are seeing great success! Enjoy life!!!

      Bruce in New Hampshire

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        Jerry from Cape Cod
        Participant

        Bruce,

        I had horrible sinus problems this season, started around Thanksgiving.  After a lot of deliberation we decided to have my lower left lung lobe removed due to damage / complete blockage of the airway and possible infection.

        I have not had one bit of sinus problem in the four weeks since the surgery.  That particular met was the last one!

        The path report showed that the Met was dying, but the infection and a couple of spots of pneumonia proved that our decision was the correct one.

        Jerry from Cape Cod

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        Jerry from Cape Cod
        Participant

        Bruce,

        I had horrible sinus problems this season, started around Thanksgiving.  After a lot of deliberation we decided to have my lower left lung lobe removed due to damage / complete blockage of the airway and possible infection.

        I have not had one bit of sinus problem in the four weeks since the surgery.  That particular met was the last one!

        The path report showed that the Met was dying, but the infection and a couple of spots of pneumonia proved that our decision was the correct one.

        Jerry from Cape Cod

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      Bruce in NH
      Participant

      Here is my ipi story. Started the 10 week cycle last summer – had a lot of diarrhea and fatigue initially but nothing compared to IL2 or biochemo therapies (over 30 hospital days in 2009). Three target tumors located in center chest, left lung and left chest wall that have been there since Dec. 2008. Dose was 3mg/kilo. Had PET scans in November, nodes were stable. Had follow-up PET scans in February; noted that chest wall node grew 50% since February and created a new adjacent hot spot. Decision to start second 10 week cycle in March; just completed the third infusion on 4/14. Still minimal side effects, nagging sinus drainage not sure if due to ipi or several colds this past winter. Some slight rash and fatigue, probably enhanced by the glass of wine I won't give up at dinnertime. You have to live too! Otherwise doing great and hoping for success in late May scans. May opt for surgery on the chest wall nodes as they are accessible; not so with the other two buried in the chest – hence the systemic ipi treatment. Still very happy I chose this program and even happier for all those of you who are seeing great success! Enjoy life!!!

      Bruce in New Hampshire

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      Jim M.
      Participant

      I was dx Stage 3C in 11/07. I had a LND to the right axillary, radiation and then Ipi with vaccines. I got almost to the 5th infusion when it was discovered I had hypophysitis (swelling of the pituitary) from Ipi. I was on Ipi from 3/08 until 10/08. I've been on a hormone replacement since. My onc. said Ipi boosted my immune system at least 5 times over baseline which he sees in 10 to 20% of patients. If that's not a complete response it's gotta be close. Since the LND I have remained NED at stage 3C.

       God Bless,

       Jim M.

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      Jim M.
      Participant

      I was dx Stage 3C in 11/07. I had a LND to the right axillary, radiation and then Ipi with vaccines. I got almost to the 5th infusion when it was discovered I had hypophysitis (swelling of the pituitary) from Ipi. I was on Ipi from 3/08 until 10/08. I've been on a hormone replacement since. My onc. said Ipi boosted my immune system at least 5 times over baseline which he sees in 10 to 20% of patients. If that's not a complete response it's gotta be close. Since the LND I have remained NED at stage 3C.

       God Bless,

       Jim M.

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      Rocco
      Participant
      Clinical Trial ParticipantNED

      Yes, ipi has thankfully worked for me.  See my full Patnet for all the surgeries, treatments and trials from original dx of unknown primary in Aug 2005 through today:  patnet profile = "Rocco".  Had a trial of Adopitve Cell Transfer of Mart1/Melan-A at DFCI which I believe contributed to success of subsequent Ipi trial.  Started MDX-010 Compassionate Use trial in Aug 2008 – took all 4 doses with only a very light 'lacey rash' across upper chest and back – hardly noticable and not very itchy.  Able to work through all treatments.  During trial at 1st CT scan, 74% of the tumor burden was GONE!  Amazing results.   News continued to get better as further reduction and tumors simply no longer there.  At end of 4th dose started to experience some eye issues (see patnet) that at first were not attributed to ipi/autoimmune – presented unlike anything trial coordinators had seen before..  Had my 1st maintenance dose and eye issues escalated so no additional maintenance doses given.  Put on high dose steriods  which took care of eye issues. We were basically writing the books between my Onc team and a Eye docs on the treatment of my side effects.   Took about 16+ months to fully get off the steriods and all meds related to steriod side-effects.  Took a few months more to start to feel 'normal' again – strength, etc..     Bottom-line:  have had no ipi or any other treatments for mel since Jan 2009 – and scans have been clear ever since!  Eye sight is 20/20.   Would I do it all again – ipi, steriods and all?  You bettcha!

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      Rocco
      Participant
      Clinical Trial ParticipantNED

      Yes, ipi has thankfully worked for me.  See my full Patnet for all the surgeries, treatments and trials from original dx of unknown primary in Aug 2005 through today:  patnet profile = "Rocco".  Had a trial of Adopitve Cell Transfer of Mart1/Melan-A at DFCI which I believe contributed to success of subsequent Ipi trial.  Started MDX-010 Compassionate Use trial in Aug 2008 – took all 4 doses with only a very light 'lacey rash' across upper chest and back – hardly noticable and not very itchy.  Able to work through all treatments.  During trial at 1st CT scan, 74% of the tumor burden was GONE!  Amazing results.   News continued to get better as further reduction and tumors simply no longer there.  At end of 4th dose started to experience some eye issues (see patnet) that at first were not attributed to ipi/autoimmune – presented unlike anything trial coordinators had seen before..  Had my 1st maintenance dose and eye issues escalated so no additional maintenance doses given.  Put on high dose steriods  which took care of eye issues. We were basically writing the books between my Onc team and a Eye docs on the treatment of my side effects.   Took about 16+ months to fully get off the steriods and all meds related to steriod side-effects.  Took a few months more to start to feel 'normal' again – strength, etc..     Bottom-line:  have had no ipi or any other treatments for mel since Jan 2009 – and scans have been clear ever since!  Eye sight is 20/20.   Would I do it all again – ipi, steriods and all?  You bettcha!

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      K in LA
      Participant

      Thanks, Douglas, for posting this roll call request.  I've been trawling the board since my husband started IPI looking for posting about the ipi experience & responders!!!

      My husvband is stage iV & psrt of the "compassionate use" expansion.  He is due to get infusion #4 next week — BTW, both his oncologist & BMS have confirmed that this dose is still free to him as a compassionate use enrollee even though it's more thatn 30 days sfter the FDA approved Yervoy (I haven't yet crossed the bridge of what'll happen if he needs future doses –we have a HIPAA  health ins. policy, a PPO which has so far coughed up for all "FDA approved" melanoma treatments, including the v.expensive hospital administered IL-2) anyway, back to his IPI experence so far:

      My husband is Braf positive & was one of the longest people on the phase 2 trial for the Braf inhibitor, PLX, and at Xmas 2010 had very little cancer left: a few sub-q's and a teeny tumor in the adrenal gland.  He'd had radiation/ablation  for a lung tumor (the oldest & biggest melanoma) which had stopped reacting to the PLX drug, in the summer of 2010 & the Drs thought it was necrotizing.  In retrospect I wish we'd ditched PLX & switched to IPI right then as the rest of his melanoma cells subsequently found a way round the Braf inhibitor, with an unusual RAS mutation.  Previously, his cancer growth had always been pretty sluggish, but this time it took off like wildfire & by the time he'd done the 28 day "wash-out" befoe IPI, he was getting new skin lesions & sub-q's every day.  plus he had 3 brain nmets (treated by gamma knife the week before he started IPI).

      The first dose of IPI pretty much put the brakes on (much to our & the Dr's relief) & temporarily some of lesions went very purple & angry, some dried out & bits dropped off,  & some sub-q's went softer.  He hasn't noticed anything so dramatic post-doses 2 or 3.  I'd say things are still growing, but at a very slow rate &, like some of the other posters, he's got a few new sub-q's.  This week one or two of the skin lesions look like they're drying out again & a couple of the sub-qs look "less healthy" (his words, not mine — I think "less robust" is preferable!).

      He always has side effect "issues" — until this year the side effects have always damaged his health far more than the cancer & he's not been able to work since April 2009 when we kicked things off with IL-2.  Until then he was a fit, healthy guy who worked out almost daily, didn't smoke, etc.  

      So far, his IPI side effects have been:

      1. Horrendous fatigue: in bed 12 hours every night (although not asleep all of that time — the painful tumors on his scalp wake him up a lot) & juest sitting watching TV & reading all day.  He has no energy to even go to friends for dinner; on a good day we make it outside for a walk after dinner (the IPI, like PLX has made him sun-sensitive).  We're waiting for the Dr to let us know his adrenal function & vit D test results.

      2. Stomach pain & really bad acid indigestion — he's always had a bit of an acid problem but it was exacerbated by chemo in 2009 (not the usual chemo treatments, a but a big dose to remove his immune system before they gave him a new one as part of another clinical trial) we'd got the remaining silent acid reflux under control with daily famatodine, but now I'm having to be very careful what I feed him or the acid gets so bad, he'll have a coughing fit & eventually throw up.

      3. Nausea (without actually throwing up — that always seems to be caused by the acid attacks) — the anti-nausea meds prescibed for it (prochloroperazine) doesn't work.

      4. Fever — lots of hot & cold flashes — these started the night of dose 1 & have continued — thankfully nowhere near as violent as they were with IL-2 . 

      He had the PLX rash but to date hasn't had this awful itchy IPI rash others have described  — only some itching in some of the tumors on his scalp. and he hasn't had the diarrhea — until recently I'd been giving him Colpermin, a British OTC treatment for irritable bowel syndrome (it's capsules of peppermint oil that release into the intestines) but we stopped last week just in case it was doing something to "up" the acid in his stomach.

      Think that all….

       

       

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      K in LA
      Participant

      Thanks, Douglas, for posting this roll call request.  I've been trawling the board since my husband started IPI looking for posting about the ipi experience & responders!!!

      My husvband is stage iV & psrt of the "compassionate use" expansion.  He is due to get infusion #4 next week — BTW, both his oncologist & BMS have confirmed that this dose is still free to him as a compassionate use enrollee even though it's more thatn 30 days sfter the FDA approved Yervoy (I haven't yet crossed the bridge of what'll happen if he needs future doses –we have a HIPAA  health ins. policy, a PPO which has so far coughed up for all "FDA approved" melanoma treatments, including the v.expensive hospital administered IL-2) anyway, back to his IPI experence so far:

      My husband is Braf positive & was one of the longest people on the phase 2 trial for the Braf inhibitor, PLX, and at Xmas 2010 had very little cancer left: a few sub-q's and a teeny tumor in the adrenal gland.  He'd had radiation/ablation  for a lung tumor (the oldest & biggest melanoma) which had stopped reacting to the PLX drug, in the summer of 2010 & the Drs thought it was necrotizing.  In retrospect I wish we'd ditched PLX & switched to IPI right then as the rest of his melanoma cells subsequently found a way round the Braf inhibitor, with an unusual RAS mutation.  Previously, his cancer growth had always been pretty sluggish, but this time it took off like wildfire & by the time he'd done the 28 day "wash-out" befoe IPI, he was getting new skin lesions & sub-q's every day.  plus he had 3 brain nmets (treated by gamma knife the week before he started IPI).

      The first dose of IPI pretty much put the brakes on (much to our & the Dr's relief) & temporarily some of lesions went very purple & angry, some dried out & bits dropped off,  & some sub-q's went softer.  He hasn't noticed anything so dramatic post-doses 2 or 3.  I'd say things are still growing, but at a very slow rate &, like some of the other posters, he's got a few new sub-q's.  This week one or two of the skin lesions look like they're drying out again & a couple of the sub-qs look "less healthy" (his words, not mine — I think "less robust" is preferable!).

      He always has side effect "issues" — until this year the side effects have always damaged his health far more than the cancer & he's not been able to work since April 2009 when we kicked things off with IL-2.  Until then he was a fit, healthy guy who worked out almost daily, didn't smoke, etc.  

      So far, his IPI side effects have been:

      1. Horrendous fatigue: in bed 12 hours every night (although not asleep all of that time — the painful tumors on his scalp wake him up a lot) & juest sitting watching TV & reading all day.  He has no energy to even go to friends for dinner; on a good day we make it outside for a walk after dinner (the IPI, like PLX has made him sun-sensitive).  We're waiting for the Dr to let us know his adrenal function & vit D test results.

      2. Stomach pain & really bad acid indigestion — he's always had a bit of an acid problem but it was exacerbated by chemo in 2009 (not the usual chemo treatments, a but a big dose to remove his immune system before they gave him a new one as part of another clinical trial) we'd got the remaining silent acid reflux under control with daily famatodine, but now I'm having to be very careful what I feed him or the acid gets so bad, he'll have a coughing fit & eventually throw up.

      3. Nausea (without actually throwing up — that always seems to be caused by the acid attacks) — the anti-nausea meds prescibed for it (prochloroperazine) doesn't work.

      4. Fever — lots of hot & cold flashes — these started the night of dose 1 & have continued — thankfully nowhere near as violent as they were with IL-2 . 

      He had the PLX rash but to date hasn't had this awful itchy IPI rash others have described  — only some itching in some of the tumors on his scalp. and he hasn't had the diarrhea — until recently I'd been giving him Colpermin, a British OTC treatment for irritable bowel syndrome (it's capsules of peppermint oil that release into the intestines) but we stopped last week just in case it was doing something to "up" the acid in his stomach.

      Think that all….

       

       

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      MaryBeth and Jeff
      Participant

      History:

      2/5/03 – right parascapular melanoma with lymph node metastasis status- post wide excision. Sentinal node biopsy microscopically negative but PCR Positive. (Sunbelt Melanoma Study).  Lymph nodes removed.

      3/1/2011 – Brain mets – 7 nodules. Nodule chains in the neck, high right axilla, both adrenals, subcutaneous tissues of the anterior abdominal wall and pelvis as well as muscular lesions without corresponding nodules and possible bony lesion at right tibia.

      Systemic Treatment: Yervoy (IPI)

      My husband began IPI on May 13, 2011.  As of  6/16/2011 – he has had Two of Four –  90 minute treatments. (Administered 3 weeks apart)

      Brain Treatments: Gamma Knife Surgery followed by 14 treatments of whole brain radiation.  

      6/9//2011 – MRI showed 7 brain nodules have shrunk some. But also revealed 5 new nodules/lesions.

      6/16/2011 – Undergoing Gamma Knife surgery again for the 5 new lesions.

      Side Effects to date after 2 IPI treatments (in order of /frequency):

      1. Severe Upset stomach and Nausea with no throwing up.  Nausea is not relieved by standard prescribed drugs. Nothing seems to work for the Nausea
      2. Intense head rushes when changing positions. (Getting up from sitting or laying down, Laying down or sitting from standing position)
      3. Weak, winded and lethargic. Sleeps approx 12 hrs per day.
      4. Various subcutanteous lumps have formed.
      5. Pneumonia
      6. Dehydration
      7. Bloody Nose
      8. Constipation (may be due to the pain meds)

       

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        killmel
        Participant

        Hi Everyone,

        It has been months since those who have taken IPI may want to give us an update on their IPI experience.

        Since FDA approval of IPI, now YERVOY, many more MPIPERs have taken IPI or planning on taking IPI so we all can benefit from experiences of others.

        The doctors using Yervoy, are still trying to determine how & why Yervoy works for some & not others.

        By telling us your experience with Yervoy, we can all share the knowledge of your experience.

        Donna of Vermont & Jerry of Cape Cod are responders. If anyone else is a responder, please post, you will give us all hope.

        If not a responder, telling us your experience with IPI can help us acccept the possibility that IPI might not work.

        Telling us about your side effects & how you dealt with the side effects can help too.

        Thank you for posting.

        Douglas

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        killmel
        Participant

        Hi Everyone,

        It has been months since those who have taken IPI may want to give us an update on their IPI experience.

        Since FDA approval of IPI, now YERVOY, many more MPIPERs have taken IPI or planning on taking IPI so we all can benefit from experiences of others.

        The doctors using Yervoy, are still trying to determine how & why Yervoy works for some & not others.

        By telling us your experience with Yervoy, we can all share the knowledge of your experience.

        Donna of Vermont & Jerry of Cape Cod are responders. If anyone else is a responder, please post, you will give us all hope.

        If not a responder, telling us your experience with IPI can help us acccept the possibility that IPI might not work.

        Telling us about your side effects & how you dealt with the side effects can help too.

        Thank you for posting.

        Douglas

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        mombase
        Participant

        Since I am just starting out on my treatment  path, I have considered all of the options with the exception of  BRAF + drug. The results have not come back yet as to whether I have the mutation. I am starting with whole brain radiation and then IPI. I ruled out  IL2 for  now because a) I would have to travel to Palo Alto to have it administered and would be away from my family, and b) I don't think I am up for side effects. IPI seems like a very viable alternative.

        I plan on posting daily on my CaringBridge.org page (Cristy Spinella) once I start treatment (in a couple of weeks). That is, if my nuked brain will allow me too!!

        Thanks for the awesome support…

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        mombase
        Participant

        Since I am just starting out on my treatment  path, I have considered all of the options with the exception of  BRAF + drug. The results have not come back yet as to whether I have the mutation. I am starting with whole brain radiation and then IPI. I ruled out  IL2 for  now because a) I would have to travel to Palo Alto to have it administered and would be away from my family, and b) I don't think I am up for side effects. IPI seems like a very viable alternative.

        I plan on posting daily on my CaringBridge.org page (Cristy Spinella) once I start treatment (in a couple of weeks). That is, if my nuked brain will allow me too!!

        Thanks for the awesome support…

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      MaryBeth and Jeff
      Participant

      History:

      2/5/03 – right parascapular melanoma with lymph node metastasis status- post wide excision. Sentinal node biopsy microscopically negative but PCR Positive. (Sunbelt Melanoma Study).  Lymph nodes removed.

      3/1/2011 – Brain mets – 7 nodules. Nodule chains in the neck, high right axilla, both adrenals, subcutaneous tissues of the anterior abdominal wall and pelvis as well as muscular lesions without corresponding nodules and possible bony lesion at right tibia.

      Systemic Treatment: Yervoy (IPI)

      My husband began IPI on May 13, 2011.  As of  6/16/2011 – he has had Two of Four –  90 minute treatments. (Administered 3 weeks apart)

      Brain Treatments: Gamma Knife Surgery followed by 14 treatments of whole brain radiation.  

      6/9//2011 – MRI showed 7 brain nodules have shrunk some. But also revealed 5 new nodules/lesions.

      6/16/2011 – Undergoing Gamma Knife surgery again for the 5 new lesions.

      Side Effects to date after 2 IPI treatments (in order of /frequency):

      1. Severe Upset stomach and Nausea with no throwing up.  Nausea is not relieved by standard prescribed drugs. Nothing seems to work for the Nausea
      2. Intense head rushes when changing positions. (Getting up from sitting or laying down, Laying down or sitting from standing position)
      3. Weak, winded and lethargic. Sleeps approx 12 hrs per day.
      4. Various subcutanteous lumps have formed.
      5. Pneumonia
      6. Dehydration
      7. Bloody Nose
      8. Constipation (may be due to the pain meds)

       

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      DrBob
      Participant
      Hello, My name is Bob Crosswell
      I live in Ft Worth ,TX
      I have Metastatic Melanoma

      I took my first Yervoy infusion a week ago.
      I had Lots of swelling in the neck and throat and could not talk .
      One vocal chord stopped working.
      I could not breathe due to swelling.
      I went in hospital for five days, finally swelling went down.
      I can only talk in a whisper.
      Rash in back and waste where elastic is tight.
      right leg prickly stings all the time.
      I have a fentnyl patch for pain, lymph nodes near kidney swollen
      My right leg turned purple from ankle to knee.

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      DrBob
      Participant
      Hello, My name is Bob Crosswell
      I live in Ft Worth ,TX
      I have Metastatic Melanoma

      I took my first Yervoy infusion a week ago.
      I had Lots of swelling in the neck and throat and could not talk .
      One vocal chord stopped working.
      I could not breathe due to swelling.
      I went in hospital for five days, finally swelling went down.
      I can only talk in a whisper.
      Rash in back and waste where elastic is tight.
      right leg prickly stings all the time.
      I have a fentnyl patch for pain, lymph nodes near kidney swollen
      My right leg turned purple from ankle to knee.

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      DrBob
      Participant
      Liver looks like it is bad now .
      I am off the drug while I detox.
      No more itching, but I need to eat cholestyramine to keep liver under control.
      I think this drug is not for me and it I stay on it I would die

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      DrBob
      Participant
      Liver looks like it is bad now .
      I am off the drug while I detox.
      No more itching, but I need to eat cholestyramine to keep liver under control.
      I think this drug is not for me and it I stay on it I would die

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      SummerRae721
      Participant

      Mom completed her last (4th) infusion September 14th. She's had a tough time but her tumors are shrinking! She was convinced that they were shrinking by the second or third week, I honestly didn't believe her, nor did her doc, but when he felt it we saw that she was right. There was a period were it seemed like it was getting bigger, but that didn't last long. She felt the worst after her first infusion, high fevers, sweating, and extreme abdominal pain (probably because there are tumors wrapped around her sigmoid colon), but all of those side effects got better with time. After the second infusion her hands started shaking and she experienced some anxiety. She says the worst side effect is the fatigue. At first she didn't leave her house, except to go to appointments. But now she's pushing herself to do a little more every day. 

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      SummerRae721
      Participant

      Mom completed her last (4th) infusion September 14th. She's had a tough time but her tumors are shrinking! She was convinced that they were shrinking by the second or third week, I honestly didn't believe her, nor did her doc, but when he felt it we saw that she was right. There was a period were it seemed like it was getting bigger, but that didn't last long. She felt the worst after her first infusion, high fevers, sweating, and extreme abdominal pain (probably because there are tumors wrapped around her sigmoid colon), but all of those side effects got better with time. After the second infusion her hands started shaking and she experienced some anxiety. She says the worst side effect is the fatigue. At first she didn't leave her house, except to go to appointments. But now she's pushing herself to do a little more every day. 

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      zaccarin
      Participant

      My husband had four infusions of Yervoy from September 9 to November 19, 2011. I will describe his situation with the hope that his story helps others and that someone might have some suggestions for him.

      Diagnosed with a scalp melanoma 2003, my husband had a sentinel node biopsy January 2004 and subsequently, removal of 31 lymph nodes, with one contaminated. The doctor then suggested what was believed to be the standard of care at the time, Interferon, alpha, which he had from for ten months, from 2004 to 2005. When we went to Sloan Kettering in 2003, we were told that he had a 30% chance of surviving to 2008. He was NED until 2009. During this period, he did qigong, and we incorporated a lot of raw foods and juicing.

      My husband was very confident and happy that he had beat the melanoma, so he stopped doing qigong and let work responsibilities consume him. In fact, as he now has reduced his duties, three people are doing his job and having difficulty keeping up. This caught up with him, as in 2009, a PET scan revealed a one sub-centimeter lung nodule, an omental lesion of 15mm and a neck lesion in the area directly below the original scalp melanoma. He had surgery for omentum lesion 2009 and surgery for neck lesion on January 2010.

      His melanoma became more aggressive after the surgery. It was, as I was told now, "in transit." In May 2010, however, another neck lesion in nearby location (under original left scalp melanoma in May 2010) spontaneously resolved within days. I had read on "Life Extension' that Tagamet could reverse melanoma, gave him some, and it seemed to work. The PET scan revealed that it had "resolved."  All that remained were the lungs.

      The Daoist Doctor of Chinese medicine that my husband began to see in 2009 prescribed teas and food therapy that led my husband to have stable disease in the lungs until May 2011. It seemed to me that things only worked for short periods of time. Instead of one, now there were three sub-centimeter lung lesions appearing in the PET scan.  We then tried macrobiotics and a different form of qigong over the summer of 2011. The results were not good.  By August 2011, we saw the growth of three lung lesions and pleural thickening. The PET scan of August 15, 2011 indicated that there was a 10 cm. mass. Many suggestions, over the summer and after the PET scan that my husband should try Yervoy, so he began in September 2011 and he had his last infusion in November 2011. The November 22, 2011 scan indicated that the lung melanoma was now 17 cm. Terrible chest pain began after the 2nd infusion. The administering doctor told him that this pain was likely caused by inflammation caused by Yervoy.
      In December 19, 2011, my husband began radiation.

      I now understand that it would have been best to reduce the tumor load prior to beginning Yervoy. I know that there are late responders, and that these late responses can begin anywhere from six months to one year after Yervoy; however, if one does not have an increase in Absolute Lymphocytes and has an increase in tumor load that is greater than 25%, then it appears unlikely that one is a late responder. Additionally, while everyone I spoke with in the summer seemed to indicate that late response was the norm, I am now reading that it only happens in a minority of individuals. I am unclear about whether the 15-20% response rate to Yervoy takes into account late responders. I have not seen much literature or case studies on Yervoy late responders because it is so soon after FDA approval.

      Had we known what we know now in 2003, this is what we would have done:

      Obtain a molecular profiling test from Caris Medical, as this is covered by most insurance. http://www.carislifesciences.com/

      We did this in the midst of Yervoy treatment at the suggestion of a colleague of mine. We discovered that my husband has low MGMT and that his tumor has a poor ability to repair itself. Given this, a strong dose of chemo, rather than immunotherapy, would have helped at the outset, when the tumor was less aggressive. Now, it obviously has been allowed to grow, and aggressive tumors are very clever at transforming themselves, so temozolomide would likely not be a good chocie.

      Additionally, we discovered that my husband has high SPARC expression. This means that ablaxane, or nab-paclitaxel, might work. Studies for this on melanoma do not seem too promising, as it works on 14-20% of the study participants; however, it's not much different from Yervoy, so had we known this it would have likely been a better choice than Yervoy.

      Molecular profiling is available, and I urge everyone to take advantage of it so that they can make decisions that are more specifically suited to their profile.

      At this point, my husband is going to begin a radiation boost next week. We hope that the chest tumor, which is causing excruciating pain, will shrink and that the broken pieces of melanoma will cause the Yervoy to kick in, as this is what my husband's oncologist mentioned might be possible. He also has increasing vomiting. I hope that this is a late response to yervoy or related to his increasing use of painkillers. I noticed that Lisa13 mentioned that her oncologist believed that her nausea was related to a late response to Yervoy. I certainly hope this is true.

      If anyone has any light to shed on possible options after Yervoy or helpful comments, i would be most appreciative. Hearing your stories, and your encouragement to each other has been inspiring, as being a caregiver is so terribly isolating and sad. I also wrote this because I urge anyone who begins Yervoy to reduce their tumor load, either by simultaneously having radiation or chemo, which can help Yervoy work better.

      Loading spinner
      zaccarin
      Participant

      My husband had four infusions of Yervoy from September 9 to November 19, 2011. I will describe his situation with the hope that his story helps others and that someone might have some suggestions for him.

      Diagnosed with a scalp melanoma 2003, my husband had a sentinel node biopsy January 2004 and subsequently, removal of 31 lymph nodes, with one contaminated. The doctor then suggested what was believed to be the standard of care at the time, Interferon, alpha, which he had from for ten months, from 2004 to 2005. When we went to Sloan Kettering in 2003, we were told that he had a 30% chance of surviving to 2008. He was NED until 2009. During this period, he did qigong, and we incorporated a lot of raw foods and juicing.

      My husband was very confident and happy that he had beat the melanoma, so he stopped doing qigong and let work responsibilities consume him. In fact, as he now has reduced his duties, three people are doing his job and having difficulty keeping up. This caught up with him, as in 2009, a PET scan revealed a one sub-centimeter lung nodule, an omental lesion of 15mm and a neck lesion in the area directly below the original scalp melanoma. He had surgery for omentum lesion 2009 and surgery for neck lesion on January 2010.

      His melanoma became more aggressive after the surgery. It was, as I was told now, "in transit." In May 2010, however, another neck lesion in nearby location (under original left scalp melanoma in May 2010) spontaneously resolved within days. I had read on "Life Extension' that Tagamet could reverse melanoma, gave him some, and it seemed to work. The PET scan revealed that it had "resolved."  All that remained were the lungs.

      The Daoist Doctor of Chinese medicine that my husband began to see in 2009 prescribed teas and food therapy that led my husband to have stable disease in the lungs until May 2011. It seemed to me that things only worked for short periods of time. Instead of one, now there were three sub-centimeter lung lesions appearing in the PET scan.  We then tried macrobiotics and a different form of qigong over the summer of 2011. The results were not good.  By August 2011, we saw the growth of three lung lesions and pleural thickening. The PET scan of August 15, 2011 indicated that there was a 10 cm. mass. Many suggestions, over the summer and after the PET scan that my husband should try Yervoy, so he began in September 2011 and he had his last infusion in November 2011. The November 22, 2011 scan indicated that the lung melanoma was now 17 cm. Terrible chest pain began after the 2nd infusion. The administering doctor told him that this pain was likely caused by inflammation caused by Yervoy.
      In December 19, 2011, my husband began radiation.

      I now understand that it would have been best to reduce the tumor load prior to beginning Yervoy. I know that there are late responders, and that these late responses can begin anywhere from six months to one year after Yervoy; however, if one does not have an increase in Absolute Lymphocytes and has an increase in tumor load that is greater than 25%, then it appears unlikely that one is a late responder. Additionally, while everyone I spoke with in the summer seemed to indicate that late response was the norm, I am now reading that it only happens in a minority of individuals. I am unclear about whether the 15-20% response rate to Yervoy takes into account late responders. I have not seen much literature or case studies on Yervoy late responders because it is so soon after FDA approval.

      Had we known what we know now in 2003, this is what we would have done:

      Obtain a molecular profiling test from Caris Medical, as this is covered by most insurance. http://www.carislifesciences.com/

      We did this in the midst of Yervoy treatment at the suggestion of a colleague of mine. We discovered that my husband has low MGMT and that his tumor has a poor ability to repair itself. Given this, a strong dose of chemo, rather than immunotherapy, would have helped at the outset, when the tumor was less aggressive. Now, it obviously has been allowed to grow, and aggressive tumors are very clever at transforming themselves, so temozolomide would likely not be a good chocie.

      Additionally, we discovered that my husband has high SPARC expression. This means that ablaxane, or nab-paclitaxel, might work. Studies for this on melanoma do not seem too promising, as it works on 14-20% of the study participants; however, it's not much different from Yervoy, so had we known this it would have likely been a better choice than Yervoy.

      Molecular profiling is available, and I urge everyone to take advantage of it so that they can make decisions that are more specifically suited to their profile.

      At this point, my husband is going to begin a radiation boost next week. We hope that the chest tumor, which is causing excruciating pain, will shrink and that the broken pieces of melanoma will cause the Yervoy to kick in, as this is what my husband's oncologist mentioned might be possible. He also has increasing vomiting. I hope that this is a late response to yervoy or related to his increasing use of painkillers. I noticed that Lisa13 mentioned that her oncologist believed that her nausea was related to a late response to Yervoy. I certainly hope this is true.

      If anyone has any light to shed on possible options after Yervoy or helpful comments, i would be most appreciative. Hearing your stories, and your encouragement to each other has been inspiring, as being a caregiver is so terribly isolating and sad. I also wrote this because I urge anyone who begins Yervoy to reduce their tumor load, either by simultaneously having radiation or chemo, which can help Yervoy work better.

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      zaccarin
      Participant

      My husband had four infusions of Yervoy from September 9 to November 19, 2011. I will describe his situation with the hope that his story helps others and that someone might have some suggestions for him.

      Diagnosed with a scalp melanoma 2003, my husband had a sentinel node biopsy January 2004 and subsequently, removal of 31 lymph nodes, with one contaminated. The doctor then suggested what was believed to be the standard of care at the time, Interferon, alpha, which he had from for ten months, from 2004 to 2005. When we went to Sloan Kettering in 2003, we were told that he had a 30% chance of surviving to 2008. He was NED until 2009. During this period, he did qigong, and we incorporated a lot of raw foods and juicing.

      My husband was very confident and happy that he had beat the melanoma, so he stopped doing qigong and let work responsibilities consume him. In fact, as he now has reduced his duties, three people are doing his job and having difficulty keeping up. This caught up with him, as in 2009, a PET scan revealed a one sub-centimeter lung nodule, an omental lesion of 15mm and a neck lesion in the area directly below the original scalp melanoma. He had surgery for omentum lesion 2009 and surgery for neck lesion on January 2010.

      His melanoma became more aggressive after the surgery. It was, as I was told now, "in transit." In May 2010, however, another neck lesion in nearby location (under original left scalp melanoma in May 2010) spontaneously resolved within days. I had read on "Life Extension' that Tagamet could reverse melanoma, gave him some, and it seemed to work. The PET scan revealed that it had "resolved."  All that remained were the lungs.

      The Daoist Doctor of Chinese medicine that my husband began to see in 2009 prescribed teas and food therapy that led my husband to have stable disease in the lungs until May 2011. It seemed to me that things only worked for short periods of time. Instead of one, now there were three sub-centimeter lung lesions appearing in the PET scan.  We then tried macrobiotics and a different form of qigong over the summer of 2011. The results were not good.  By August 2011, we saw the growth of three lung lesions and pleural thickening. The PET scan of August 15, 2011 indicated that there was a 10 cm. mass. Many suggestions, over the summer and after the PET scan that my husband should try Yervoy, so he began in September 2011 and he had his last infusion in November 2011. The November 22, 2011 scan indicated that the lung melanoma was now 17 cm. Terrible chest pain began after the 2nd infusion. The administering doctor told him that this pain was likely caused by inflammation caused by Yervoy.
      In December 19, 2011, my husband began radiation.

      I now understand that it would have been best to reduce the tumor load prior to beginning Yervoy. I know that there are late responders, and that these late responses can begin anywhere from six months to one year after Yervoy; however, if one does not have an increase in Absolute Lymphocytes and has an increase in tumor load that is greater than 25%, then it appears unlikely that one is a late responder. Additionally, while everyone I spoke with in the summer seemed to indicate that late response was the norm, I am now reading that it only happens in a minority of individuals. I am unclear about whether the 15-20% response rate to Yervoy takes into account late responders. I have not seen much literature or case studies on Yervoy late responders because it is so soon after FDA approval.

      Had we known what we know now in 2003, this is what we would have done:

      Obtain a molecular profiling test from Caris Medical, as this is covered by most insurance. http://www.carislifesciences.com/

      We did this in the midst of Yervoy treatment at the suggestion of a colleague of mine. We discovered that my husband has low MGMT and that his tumor has a poor ability to repair itself. Given this, a strong dose of chemo, rather than immunotherapy, would have helped at the outset, when the tumor was less aggressive. Now, it obviously has been allowed to grow, and aggressive tumors are very clever at transforming themselves, so temozolomide would likely not be a good chocie.

      Additionally, we discovered that my husband has high SPARC expression. This means that ablaxane, or nab-paclitaxel, might work. Studies for this on melanoma do not seem too promising, as it works on 14-20% of the study participants; however, it's not much different from Yervoy, so had we known this it would have likely been a better choice than Yervoy.

      Molecular profiling is available, and I urge everyone to take advantage of it so that they can make decisions that are more specifically suited to their profile.

      At this point, my husband is going to begin a radiation boost next week. We hope that the chest tumor, which is causing excruciating pain, will shrink and that the broken pieces of melanoma will cause the Yervoy to kick in, as this is what my husband's oncologist mentioned might be possible. He also has increasing vomiting. I hope that this is a late response to yervoy or related to his increasing use of painkillers. I noticed that Lisa13 mentioned that her oncologist believed that her nausea was related to a late response to Yervoy. I certainly hope this is true.

      If anyone has any light to shed on possible options after Yervoy or helpful comments, i would be most appreciative. Hearing your stories, and your encouragement to each other has been inspiring, as being a caregiver is so terribly isolating and sad. I also wrote this because I urge anyone who begins Yervoy to reduce their tumor load, either by simultaneously having radiation or chemo, which can help Yervoy work better.

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      Dave from Ormond
      Participant

      I started ipi treatments on September 4th, 2013. I have stage IV Melanoma located under my right armpit.  I have both lesions and some spots under the skin, off the intransit pathway.  Had a rash on my forehead 4 days after dose 1, but nothing I'd call another real side effect until one week after my second dose.  I have been tired a lot.  Walking a mile seems like walking 100 miles sometimes.  Doing yard work made me extremely worn out.  

      I started getting painful, migraine like headaches about 6 or 7 days after dose 2.  I was given a CT Scan and a Brain MRI which both showed no tumor growth in the brain.  That was good news!  The cause of the headaches was swelling of my Pituitary gland.  A well documented side effect from the ipi.  

      I was placed a prednizone (sp?) and dosed down like a dose pack from 3 – 20 mg  a day to where I'm now on 1 per day.  The side effects of the steroids are miserable, but liveable.  I felt relief of my headache about 15 hours after starting the steroids.  What a relief it was!!!!  However, my Doctor wanted to make 100% sure there were no tumors growing in my brain and decided we (I) should have a Lumbar Puncture (cute new term for Spinal Tap).  Let's just say that I regret the Spinal Tap.  The headaches, although much milder, have been back since the day after the spinal tap.  They only go away after periods of horizontal rest.  Which is fine, unless you're trying to stay working and keep your main source of income as I am.

      I met with an Endrocronolgist and was informed that due to the Pituitary swelling I now have low testosterone, thyroid production, and t4 counts.  All which can be replaced with medicines, some which I may have to take for many years to come.  

      My Medical Oncologist, Dr. Alexander has been in communication with a Dr. Jeffrey Weber at the Moffit Center and have determined that I should be able to resume my Yervoy treatment this Wednesday, October 30th after a 3 week delay from my last treatment on September 25th.  I have been assured that the break in doses will not negatively impact the drugs strength or ability to work.

      I guess my points for anyone reading this is 1) Report all not normal headaches to your Dr. immediately.  Trust me, you'll know when it's not a normal headache.  Mine felt like my brains wanted to escape through my eyebrows!  2) You can resume treatment after having the headaches/swelling.  This is good news because I believe that earlier in the drugs existence, they were not letting most people resume treatment.  3)  Everything about this drug is unique for everyone as far as side effects go.  Make sure that you have and/or are your advocate.  I've had to fight a few times to get the point of my pain across.  I've had to have my wife call numerous times to find out when we were supposed to be contacted by Doctors, labs, etc.  You have got to fight for YOU!  

      Stay positive!

      Dave 

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      Dave from Ormond
      Participant

      I started ipi treatments on September 4th, 2013. I have stage IV Melanoma located under my right armpit.  I have both lesions and some spots under the skin, off the intransit pathway.  Had a rash on my forehead 4 days after dose 1, but nothing I'd call another real side effect until one week after my second dose.  I have been tired a lot.  Walking a mile seems like walking 100 miles sometimes.  Doing yard work made me extremely worn out.  

      I started getting painful, migraine like headaches about 6 or 7 days after dose 2.  I was given a CT Scan and a Brain MRI which both showed no tumor growth in the brain.  That was good news!  The cause of the headaches was swelling of my Pituitary gland.  A well documented side effect from the ipi.  

      I was placed a prednizone (sp?) and dosed down like a dose pack from 3 – 20 mg  a day to where I'm now on 1 per day.  The side effects of the steroids are miserable, but liveable.  I felt relief of my headache about 15 hours after starting the steroids.  What a relief it was!!!!  However, my Doctor wanted to make 100% sure there were no tumors growing in my brain and decided we (I) should have a Lumbar Puncture (cute new term for Spinal Tap).  Let's just say that I regret the Spinal Tap.  The headaches, although much milder, have been back since the day after the spinal tap.  They only go away after periods of horizontal rest.  Which is fine, unless you're trying to stay working and keep your main source of income as I am.

      I met with an Endrocronolgist and was informed that due to the Pituitary swelling I now have low testosterone, thyroid production, and t4 counts.  All which can be replaced with medicines, some which I may have to take for many years to come.  

      My Medical Oncologist, Dr. Alexander has been in communication with a Dr. Jeffrey Weber at the Moffit Center and have determined that I should be able to resume my Yervoy treatment this Wednesday, October 30th after a 3 week delay from my last treatment on September 25th.  I have been assured that the break in doses will not negatively impact the drugs strength or ability to work.

      I guess my points for anyone reading this is 1) Report all not normal headaches to your Dr. immediately.  Trust me, you'll know when it's not a normal headache.  Mine felt like my brains wanted to escape through my eyebrows!  2) You can resume treatment after having the headaches/swelling.  This is good news because I believe that earlier in the drugs existence, they were not letting most people resume treatment.  3)  Everything about this drug is unique for everyone as far as side effects go.  Make sure that you have and/or are your advocate.  I've had to fight a few times to get the point of my pain across.  I've had to have my wife call numerous times to find out when we were supposed to be contacted by Doctors, labs, etc.  You have got to fight for YOU!  

      Stay positive!

      Dave 

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      Dave from Ormond
      Participant

      I started ipi treatments on September 4th, 2013. I have stage IV Melanoma located under my right armpit.  I have both lesions and some spots under the skin, off the intransit pathway.  Had a rash on my forehead 4 days after dose 1, but nothing I'd call another real side effect until one week after my second dose.  I have been tired a lot.  Walking a mile seems like walking 100 miles sometimes.  Doing yard work made me extremely worn out.  

      I started getting painful, migraine like headaches about 6 or 7 days after dose 2.  I was given a CT Scan and a Brain MRI which both showed no tumor growth in the brain.  That was good news!  The cause of the headaches was swelling of my Pituitary gland.  A well documented side effect from the ipi.  

      I was placed a prednizone (sp?) and dosed down like a dose pack from 3 – 20 mg  a day to where I'm now on 1 per day.  The side effects of the steroids are miserable, but liveable.  I felt relief of my headache about 15 hours after starting the steroids.  What a relief it was!!!!  However, my Doctor wanted to make 100% sure there were no tumors growing in my brain and decided we (I) should have a Lumbar Puncture (cute new term for Spinal Tap).  Let's just say that I regret the Spinal Tap.  The headaches, although much milder, have been back since the day after the spinal tap.  They only go away after periods of horizontal rest.  Which is fine, unless you're trying to stay working and keep your main source of income as I am.

      I met with an Endrocronolgist and was informed that due to the Pituitary swelling I now have low testosterone, thyroid production, and t4 counts.  All which can be replaced with medicines, some which I may have to take for many years to come.  

      My Medical Oncologist, Dr. Alexander has been in communication with a Dr. Jeffrey Weber at the Moffit Center and have determined that I should be able to resume my Yervoy treatment this Wednesday, October 30th after a 3 week delay from my last treatment on September 25th.  I have been assured that the break in doses will not negatively impact the drugs strength or ability to work.

      I guess my points for anyone reading this is 1) Report all not normal headaches to your Dr. immediately.  Trust me, you'll know when it's not a normal headache.  Mine felt like my brains wanted to escape through my eyebrows!  2) You can resume treatment after having the headaches/swelling.  This is good news because I believe that earlier in the drugs existence, they were not letting most people resume treatment.  3)  Everything about this drug is unique for everyone as far as side effects go.  Make sure that you have and/or are your advocate.  I've had to fight a few times to get the point of my pain across.  I've had to have my wife call numerous times to find out when we were supposed to be contacted by Doctors, labs, etc.  You have got to fight for YOU!  

      Stay positive!

      Dave 

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