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An update on myself and IL-2…

Forums General Melanoma Community An update on myself and IL-2…

  • Post
    himynameiskevin
    Participant

    So I'm 5 weeks and 5 days out of IL-2. I got my CT scan on monday and discussed the results today. Sorry to say it, but unfortunately IL-2 wasn't my magic bullet (unless by miracle I'm some sort of late responder and it hasn't kicked in yet, which I've heard is possible… my fingers are crossed.. we'll see). Anyway, it turns out the tumors are still there, chest, back, lungs…

    So I'm 5 weeks and 5 days out of IL-2. I got my CT scan on monday and discussed the results today. Sorry to say it, but unfortunately IL-2 wasn't my magic bullet (unless by miracle I'm some sort of late responder and it hasn't kicked in yet, which I've heard is possible… my fingers are crossed.. we'll see). Anyway, it turns out the tumors are still there, chest, back, lungs… They did say my liver appears to be clear, but it most likely just seems that way because of the CT scan, I guess it sometimes doesn't pickup certain tumors and an Intravenous petscan would be needed to tell for sure. They think I may have had a minimal temporary response because of the softening I felt in the mass on my back. But not enough of a response to strongly encourage another round. So we've discussed more options. Like possibly trying the IL-2 again, maybe Ipilimumab. I'm BRAF+ so we discussed PLX4032. And lastly, possibly seeing if I'm eligible for Adoptive Cell Therapy. So that's it. I wish I could say I was a positive responder, but hey, If I'm not, then there's a better chance that someone else on here is. So that's good. One thing I'm focusing on is that despite the numerous nodules in my lungs, I still feel fine, no breathing/physical problems, I ride my bike everyday have a very active lifestyle. Just hope this indicates I still have some quality time to find something that works for me.. I do have a lingering Itchy-throat cough I seemed to get after the IL-2, but appears to be fading as time goes by. And that's about it for now. I'll update as soon as something new comes up. Thank you all for being so supportive. You know how much it means. With Love, -Kevin

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  • Replies
      EmilyandMike
      Participant
      Hi Kevin…so sorry that IL2 isn’t working right now. It seems like melanoma responds with combinations of drugs versus a mono therapy. We have a friend who has had a great response to biochemo here in San Fran done by dr minor. It is a tough treatment though…but her tumors are almost gone after 4 rounds. See her info on my blog at emandmichael.com. There are others who have done this treatment (Suzanne from ca) with great success. Whatever you choose know that we are here rooting for you. All my best to you Kevin
      Emily

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      EmilyandMike
      Participant
      Hi Kevin…so sorry that IL2 isn’t working right now. It seems like melanoma responds with combinations of drugs versus a mono therapy. We have a friend who has had a great response to biochemo here in San Fran done by dr minor. It is a tough treatment though…but her tumors are almost gone after 4 rounds. See her info on my blog at emandmichael.com. There are others who have done this treatment (Suzanne from ca) with great success. Whatever you choose know that we are here rooting for you. All my best to you Kevin
      Emily

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      Vermont_Donna
      Participant

      Hi Kevin,

         Love your optimism and attitude. Hang in there! Glad you can still ride your bike and feel great. Yes something will come along and be the right treatment for you……

      In light and love,

      Vermont_Donna, stage 3a

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      Vermont_Donna
      Participant

      Hi Kevin,

         Love your optimism and attitude. Hang in there! Glad you can still ride your bike and feel great. Yes something will come along and be the right treatment for you……

      In light and love,

      Vermont_Donna, stage 3a

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      Rocklove
      Participant

      Your an inspiration to all of us Kevin.

      We are all praying you will find that magic bullet.

      Rocky (Stage IV Liver Mets)

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      Rocklove
      Participant

      Your an inspiration to all of us Kevin.

      We are all praying you will find that magic bullet.

      Rocky (Stage IV Liver Mets)

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      ValinMtl
      Participant

      Kevin, I'm so disappointed that IL-2 wasn't your magic bullet.  I'm praying that your team acts quickly and gets you into a new trial that will prove to be the winner. Your positive attitude is a great benefit and will get you through this.  There are so many new drugs coming around the corner so keep on fighting the beast.  Val xx

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      ValinMtl
      Participant

      Kevin, I'm so disappointed that IL-2 wasn't your magic bullet.  I'm praying that your team acts quickly and gets you into a new trial that will prove to be the winner. Your positive attitude is a great benefit and will get you through this.  There are so many new drugs coming around the corner so keep on fighting the beast.  Val xx

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      jag
      Participant

      Kevin, very sorry to hear this.  You do have a great attitude, though.  Sit tight, take your time to look at the options.  I would definitely put Ipilimumab high on the list of treatment options.  If your scans show no increase in metastases size>25%, and no increase in the number of metastases, this indicates that you are stable.  That would be a major factor to consider  if your doctor were considering another round of IL2. 

      Either way, this is my ranking in order of  treatment options.

      1. Ipilimumab, Biochemotherapy, BRAF, Oncovex vaccine(if you don't get the placebo group) and I haven't seen anybody on here who has survived with adoptive cell transfer (I haven't read up on the research either). but if you wan't to get the ball rolling to get the cells growing and try out other things in the meantime.  That would definitely make sense.

      I'll keep praying for you

      God Bless 

      John 

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      jag
      Participant

      Kevin, very sorry to hear this.  You do have a great attitude, though.  Sit tight, take your time to look at the options.  I would definitely put Ipilimumab high on the list of treatment options.  If your scans show no increase in metastases size>25%, and no increase in the number of metastases, this indicates that you are stable.  That would be a major factor to consider  if your doctor were considering another round of IL2. 

      Either way, this is my ranking in order of  treatment options.

      1. Ipilimumab, Biochemotherapy, BRAF, Oncovex vaccine(if you don't get the placebo group) and I haven't seen anybody on here who has survived with adoptive cell transfer (I haven't read up on the research either). but if you wan't to get the ball rolling to get the cells growing and try out other things in the meantime.  That would definitely make sense.

      I'll keep praying for you

      God Bless 

      John 

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      makedoandmend
      Participant

      I know its not great news but its a good thing that you are BRAF positive and have a lot of options.  Plus it doesn't hurt that you are very knowledgeable and have a great attitude.  I feel like I've learned a lot by reading your posts. Hoping the next option you choose does the trick. 

      pat on li

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      makedoandmend
      Participant

      I know its not great news but its a good thing that you are BRAF positive and have a lot of options.  Plus it doesn't hurt that you are very knowledgeable and have a great attitude.  I feel like I've learned a lot by reading your posts. Hoping the next option you choose does the trick. 

      pat on li

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      King
      Participant

      You have an amazing attitude, Kevin!  Keep pedaling and we'll keep praying.

       

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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      King
      Participant

      You have an amazing attitude, Kevin!  Keep pedaling and we'll keep praying.

       

      Stay Strong
      King

      Stage IV 7/05 Liver mets

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        Laurie from maine
        Participant

        Hi Kevin,

        I have been wondering how you were doing, thank you for posting.  I am sorry that you had no response.  You are young and strong and have a wonderful strong attitude.  There are options out there and I am glad to see you are BRAF+.  Stay strong and know we are all behind you and praying for you.

        take care, laurie from maine

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        Laurie from maine
        Participant

        Hi Kevin,

        I have been wondering how you were doing, thank you for posting.  I am sorry that you had no response.  You are young and strong and have a wonderful strong attitude.  There are options out there and I am glad to see you are BRAF+.  Stay strong and know we are all behind you and praying for you.

        take care, laurie from maine

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      lhaley
      Participant

      Kevin,

      I'm sorry that IL2 wasn't your magic bullet but hopefully it will have tuned your body into the right path for your next options. I love your great attitude!!  Let us know what you decide to do.

      Linda

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      lhaley
      Participant

      Kevin,

      I'm sorry that IL2 wasn't your magic bullet but hopefully it will have tuned your body into the right path for your next options. I love your great attitude!!  Let us know what you decide to do.

      Linda

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        killmel
        Participant

        Kevin,

         

        You are young, strong & have a great attitude so you can fight on with treatment options and succeed.

        Where are you beng treated- do you have a melanoma specialist??? I think that you mentioned UCSD.

        Can you get BRAF at UCSD???  What time frame do you have to chose a treatment ??

        Good Luck with your decision. Please keep us posted.

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        killmel
        Participant

        Kevin,

         

        You are young, strong & have a great attitude so you can fight on with treatment options and succeed.

        Where are you beng treated- do you have a melanoma specialist??? I think that you mentioned UCSD.

        Can you get BRAF at UCSD???  What time frame do you have to chose a treatment ??

        Good Luck with your decision. Please keep us posted.

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      JerryfromFauq
      Participant

      Have you done the full three rounds of IL-2 (six weeks of receiving the IL-2 bags in the hospital?)  One round is seldem if ever a magic bullet to get rid of melanoma.

      Just make sure you wear riding boots fr skittish horses!

      http://cancerguide.org/rcc_il2hd.html.          CancerGuide: Classic High Dose Interleukin-2

      http://www.carepages.com/carepages/JerryEllis

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      JerryfromFauq
      Participant

      Have you done the full three rounds of IL-2 (six weeks of receiving the IL-2 bags in the hospital?)  One round is seldem if ever a magic bullet to get rid of melanoma.

      Just make sure you wear riding boots fr skittish horses!

      http://cancerguide.org/rcc_il2hd.html.          CancerGuide: Classic High Dose Interleukin-2

      http://www.carepages.com/carepages/JerryEllis

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