just a little curious
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just a little curious

› Forums › General Melanoma Community › just a little curious

  • Post
    • May 19, 2011 at 10:05 pm
    meag_brammer
    Participant
    Hi people. My name is Meagan. I’ve been fighting melanoma since 2004 . I am 24 years old. I’m about to start my 5th different type of chemo treatment next week. Ipilumbab (IPI)
    I was wondering is anybody would mind letting know What to expect from this drug. Side effect wise.
    I have a tumor in my left groin area.
    Will my hips swell?
    Does it effect appetite?
    Will I lose or gain weight?
    Is it flu like symptoms?
    Any info would really help me out alot and help me feel alot more confident in starting this treatment.
    Thank u for ur time and consideration.
    -meagan

    Hi people. My name is Meagan. I’ve been fighting melanoma since 2004 . I am 24 years old. I’m about to start my 5th different type of chemo treatment next week. Ipilumbab (IPI)
    I was wondering is anybody would mind letting know What to expect from this drug. Side effect wise.
    I have a tumor in my left groin area.
    Will my hips swell?
    Does it effect appetite?
    Will I lose or gain weight?
    Is it flu like symptoms?
    Any info would really help me out alot and help me feel alot more confident in starting this treatment.
    Thank u for ur time and consideration.
    -meagan

Viewing 9 reply threads
  • Replies
      • May 19, 2011 at 10:21 pm
      shellebrownies
      Participant

      Hello, Meagan.

      Sorry to see you've had to join our group, but glad you came here.

      Ipilumumab has recently been approved by the FDA and now also goes by the brand name Yervoy.

      Here is a link to the medicine insert regarding it:

      http://packageinserts.bms.com/medguide/medguide_yervoy.pdf

      My husband has not taken it yet, so he hasn't experienced it personally, but many people on this site have. Also, this site has a search feature and if you typed in, say "Ipi effects", you probably could find some threads or posts dedicated to that topic.

      Also, our oncologist was talking with us about Ipi as an option today. He said it is an infusion that is administered once every 3 weeks. 

      If I recall from reading other messages here, some people experience itchiness and rashes. There are more serious side effects (like the ones listed in the link above) as well, but they usually can be controlled with steroids if you have them. (Again, news we got via Don's oncologist)

      Meagan, are you seeing a melanoma specialist? Do you know if there are any trials out there right now that might service your needs better? (Ipi only has about 15% response rate I heard?) Are you BRAF positive? Because there is a great trial out there right now if you are.

      Finally, if you don't get all your  questions answered here, please ask your oncologist. He/she should be able to answer any question you might have about it. 

      Good luck, Meagan. I hope you will come back by and let us know how your fight is  going. There is a really great bunch of people here who are very knowledgeable and supportive and going through the very same stuff as you! : )

      Michelle, wife of Don, Stage IV

      • May 19, 2011 at 10:21 pm
      shellebrownies
      Participant

      Hello, Meagan.

      Sorry to see you've had to join our group, but glad you came here.

      Ipilumumab has recently been approved by the FDA and now also goes by the brand name Yervoy.

      Here is a link to the medicine insert regarding it:

      http://packageinserts.bms.com/medguide/medguide_yervoy.pdf

      My husband has not taken it yet, so he hasn't experienced it personally, but many people on this site have. Also, this site has a search feature and if you typed in, say "Ipi effects", you probably could find some threads or posts dedicated to that topic.

      Also, our oncologist was talking with us about Ipi as an option today. He said it is an infusion that is administered once every 3 weeks. 

      If I recall from reading other messages here, some people experience itchiness and rashes. There are more serious side effects (like the ones listed in the link above) as well, but they usually can be controlled with steroids if you have them. (Again, news we got via Don's oncologist)

      Meagan, are you seeing a melanoma specialist? Do you know if there are any trials out there right now that might service your needs better? (Ipi only has about 15% response rate I heard?) Are you BRAF positive? Because there is a great trial out there right now if you are.

      Finally, if you don't get all your  questions answered here, please ask your oncologist. He/she should be able to answer any question you might have about it. 

      Good luck, Meagan. I hope you will come back by and let us know how your fight is  going. There is a really great bunch of people here who are very knowledgeable and supportive and going through the very same stuff as you! : )

      Michelle, wife of Don, Stage IV

      • May 19, 2011 at 10:35 pm
      Carol Taylor
      Participant

      Hi Meagan,

      24 and fighting since you were in your teens!  My hat's off and my heart goes out to you. And about to start your 5th type of chemo, wow, you're tough!

      I just want to encourage you and let you know that we'll all be holding you up in prayer and sending you good, positive thoughts…heck, we'll adopt you! I'm 3b and never done a treatment other than surgeries, so I can't begin to answer your questions, but I can offer support.

      Lord, in Your mercy, guide Meagan's treatment, let her respond positively to it and keep side effects low. Hold her close and let her know You're there with her and we are too, in spirit. Bless her, God. Thank You. Amen and Amen.

      Grace and peace Friend,

      Carol

      • May 19, 2011 at 10:35 pm
      Carol Taylor
      Participant

      Hi Meagan,

      24 and fighting since you were in your teens!  My hat's off and my heart goes out to you. And about to start your 5th type of chemo, wow, you're tough!

      I just want to encourage you and let you know that we'll all be holding you up in prayer and sending you good, positive thoughts…heck, we'll adopt you! I'm 3b and never done a treatment other than surgeries, so I can't begin to answer your questions, but I can offer support.

      Lord, in Your mercy, guide Meagan's treatment, let her respond positively to it and keep side effects low. Hold her close and let her know You're there with her and we are too, in spirit. Bless her, God. Thank You. Amen and Amen.

      Grace and peace Friend,

      Carol

      • May 19, 2011 at 11:08 pm
      meag_brammer
      Participant
      Hey. Thank u for the support. I’m loving this sight. Thank u thank u.
      So actually I go see my specialist reagularly. He has told me alot about IOI but I would like personal info about the subject from people who have actually experienced it.
      I have read up on ipi threw the internet and have gotten alot of info on the subject of side effects … but I would just like personal input. Personal experience. I’ve read So.many differant things. Including off of this sight from differant people about ipi.
      I’m so appreciative of ur help and concern. Its nice to talk about things with people who r also going threw it as well. Sharing experiences.
      Thank u.
      Meagan
      • May 19, 2011 at 11:08 pm
      meag_brammer
      Participant
      Hey. Thank u for the support. I’m loving this sight. Thank u thank u.
      So actually I go see my specialist reagularly. He has told me alot about IOI but I would like personal info about the subject from people who have actually experienced it.
      I have read up on ipi threw the internet and have gotten alot of info on the subject of side effects … but I would just like personal input. Personal experience. I’ve read So.many differant things. Including off of this sight from differant people about ipi.
      I’m so appreciative of ur help and concern. Its nice to talk about things with people who r also going threw it as well. Sharing experiences.
      Thank u.
      Meagan
      • May 19, 2011 at 11:27 pm
      KatyWI
      Participant

      Hi Meagan,

      I had ipi Nov 2010-Jan 2011.  I had very few side effects.  I had one subq get kind of swollen and painful.  No weight change, no appetite change, and I did not experience significant colitis.  I had a brief period of itchy skin.  Ipi kept me stable; it may have promoted some tumor necrosis, but I can't be sure becaues I had resection at the end of the trial.  Now, three and four months after finishing treatment, I'm having a hair shedding incident.  Nothing that anyone would notice from looking at me; there are just a bunch of annoying hairs in the shower each morning.  I'm currenlty ned and already experiencing premature scanxiety because I'm due to scan in about a month!

      I hope Donna from Vermont will come by; she's one of our poster children for ipi – complete responder.

      Good luck…I started my battle at 26 so I have an inkling of how you might feel.

      Katy

        • May 20, 2011 at 12:33 am
        Vermont_Donna
        Participant

        Hi Meagan,

        I did Ipi starting December 1 2010 through Feb 1 2011…and I have been called a complete responder by my melanoma oncologist. I am stage 3a, have had numerous reoccurences and many different treatments, and the melanoma kept coming back. By December 2010 my melanoma, which has only been contained in my right leg, was multiplying fast…I mean new tumors, cutaneous and sub cutaneous every day, up and down my leg, and several which were near or at my groin level. I participated in a clinical trial for unresectable stage 3 or 4 melanoma (mine was unresectable due to poorly healing wider excision wounds due to having radiation treatments twice to my leg and an ILP, and in fact I still have the two wounds, it will be one year for one of them and 8 months for the other on June 1st, that they have still not healed completely). After the first infusion of Ipi, ( you get an IV –I got a mediport as it takes 5 or 6 sticks to get an IV in my arms now), my oncologist thought my skin looked like it had some white patches…this is a whitening of the skin called vitiligo, and it is a sign that you are responding to the Ipi. After the second dose one of my melanomas crusted over and gradually flaked off. i thought well isnt this good news! After the third dose some of my tumors were starting to reabsorb, and after the 4 th infusion all 60 of my tumors were reabsorbing, all I could see was a purplish mark on my skin. Two weeks after my last dose my PET/CT scans revealed some inflammatory processes going on in my leg, and just last week I had my 12 week PET/CT scans and there are no further inflammatory processes going on (except where I have the poorly healing wounds on my lower calf), or signs of cancer anywhere.

        Side effects were increased fatigue and some nausea, a few days a week…..and sometimes the nausea was extreme, but if my compazine didnt work, after 90 minutes or so I would take my Zofran and I would be ok in a bit. I had a non itchy rash all over my legs and back for about a month somewhere around the 3rd or 4th infusion. I have received alot of information and education about all the side effects that can potentially happen…all the things ending in "itis"….pancreatitis, colitis, uveitis, nephritis, etc…as this drug "messes with your immune system". These side effects can occur months or even years after your four doses. Early attention to these can help minimize the seriousness of these side effects. The Ipi dose I received was 3mg/kg of body weight.

        I hope this helps and I wish you success with this treatment, and thanks Katy for your kind words for me!!!

        Vermont_Donna, stage 3a

        • May 20, 2011 at 12:33 am
        Vermont_Donna
        Participant

        Hi Meagan,

        I did Ipi starting December 1 2010 through Feb 1 2011…and I have been called a complete responder by my melanoma oncologist. I am stage 3a, have had numerous reoccurences and many different treatments, and the melanoma kept coming back. By December 2010 my melanoma, which has only been contained in my right leg, was multiplying fast…I mean new tumors, cutaneous and sub cutaneous every day, up and down my leg, and several which were near or at my groin level. I participated in a clinical trial for unresectable stage 3 or 4 melanoma (mine was unresectable due to poorly healing wider excision wounds due to having radiation treatments twice to my leg and an ILP, and in fact I still have the two wounds, it will be one year for one of them and 8 months for the other on June 1st, that they have still not healed completely). After the first infusion of Ipi, ( you get an IV –I got a mediport as it takes 5 or 6 sticks to get an IV in my arms now), my oncologist thought my skin looked like it had some white patches…this is a whitening of the skin called vitiligo, and it is a sign that you are responding to the Ipi. After the second dose one of my melanomas crusted over and gradually flaked off. i thought well isnt this good news! After the third dose some of my tumors were starting to reabsorb, and after the 4 th infusion all 60 of my tumors were reabsorbing, all I could see was a purplish mark on my skin. Two weeks after my last dose my PET/CT scans revealed some inflammatory processes going on in my leg, and just last week I had my 12 week PET/CT scans and there are no further inflammatory processes going on (except where I have the poorly healing wounds on my lower calf), or signs of cancer anywhere.

        Side effects were increased fatigue and some nausea, a few days a week…..and sometimes the nausea was extreme, but if my compazine didnt work, after 90 minutes or so I would take my Zofran and I would be ok in a bit. I had a non itchy rash all over my legs and back for about a month somewhere around the 3rd or 4th infusion. I have received alot of information and education about all the side effects that can potentially happen…all the things ending in "itis"….pancreatitis, colitis, uveitis, nephritis, etc…as this drug "messes with your immune system". These side effects can occur months or even years after your four doses. Early attention to these can help minimize the seriousness of these side effects. The Ipi dose I received was 3mg/kg of body weight.

        I hope this helps and I wish you success with this treatment, and thanks Katy for your kind words for me!!!

        Vermont_Donna, stage 3a

      • May 19, 2011 at 11:27 pm
      KatyWI
      Participant

      Hi Meagan,

      I had ipi Nov 2010-Jan 2011.  I had very few side effects.  I had one subq get kind of swollen and painful.  No weight change, no appetite change, and I did not experience significant colitis.  I had a brief period of itchy skin.  Ipi kept me stable; it may have promoted some tumor necrosis, but I can't be sure becaues I had resection at the end of the trial.  Now, three and four months after finishing treatment, I'm having a hair shedding incident.  Nothing that anyone would notice from looking at me; there are just a bunch of annoying hairs in the shower each morning.  I'm currenlty ned and already experiencing premature scanxiety because I'm due to scan in about a month!

      I hope Donna from Vermont will come by; she's one of our poster children for ipi – complete responder.

      Good luck…I started my battle at 26 so I have an inkling of how you might feel.

      Katy

      • May 20, 2011 at 12:59 am
      meag_brammer
      Participant

      Oh my goodness. Thank you all so much. You have helped me out so incredibly much. You input and experiences have mad me feel more comfy with starting the IPI and knowing whats the come with the side effects. I was mainly nervous about any swelling in the grion area cause my tumor is inside my left grion. I dont have anything to watch on the outside.

      I am just so thrilled that I decided to join this online group and have the oppertunity to meet and takl with such wonderful helpful people. Your help has really ment the world to me. Eases my mind about IPI and I feel much better about my choice in going threw with this treatment.

      Your all so wonderful and I also wish you all the best in whatever rainstorms come your way. Keep dancing and always remember……….

      I-C-A-N-C-E-R-V-I-V-E 

      🙂  Meagan

      • May 20, 2011 at 12:59 am
      meag_brammer
      Participant

      Oh my goodness. Thank you all so much. You have helped me out so incredibly much. You input and experiences have mad me feel more comfy with starting the IPI and knowing whats the come with the side effects. I was mainly nervous about any swelling in the grion area cause my tumor is inside my left grion. I dont have anything to watch on the outside.

      I am just so thrilled that I decided to join this online group and have the oppertunity to meet and takl with such wonderful helpful people. Your help has really ment the world to me. Eases my mind about IPI and I feel much better about my choice in going threw with this treatment.

      Your all so wonderful and I also wish you all the best in whatever rainstorms come your way. Keep dancing and always remember……….

      I-C-A-N-C-E-R-V-I-V-E 

      🙂  Meagan

Viewing 9 reply threads
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