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First Ipi/Zel/SRS scan good news!!

Forums General Melanoma Community First Ipi/Zel/SRS scan good news!!

  • Post
    awillett1991
    Participant
    Scans came back showing nothing new, and nothing grew!! I continue to have thyroid lighting up incl some lymphatic tissue and swelling however TSH and Free T4 are back to normal, probably from steroids. It was biopsied 3 yrs ago, did a full endocrinology workup in Oct/Nov 12 and my doc remains unconcerned – says its Ipi induced. My 4mm brain met is now “tiny”, the other went from 6 or 7 mm, depending on which report you read, to 5×3. Also there was no edema, and rad onc said I had it in my spinal cord due to “questionable leptomenengial enhancement over left frontal convexity”.

    Scans came back showing nothing new, and nothing grew!! I continue to have thyroid lighting up incl some lymphatic tissue and swelling however TSH and Free T4 are back to normal, probably from steroids. It was biopsied 3 yrs ago, did a full endocrinology workup in Oct/Nov 12 and my doc remains unconcerned – says its Ipi induced. My 4mm brain met is now “tiny”, the other went from 6 or 7 mm, depending on which report you read, to 5×3. Also there was no edema, and rad onc said I had it in my spinal cord due to “questionable leptomenengial enhancement over left frontal convexity”. He discussed WBR, but we went SRS instead. Now this area is “less prominent”. Scary.

    The mass inside my heart had really taken off when I stopped Zel – from 7×11 mm on Sept 29 to 28x41x41mm with decreased heart function in 47 days off Zel. Now function is near normal with mass reduced to 19x30x34.

    I have been back on Zel 63 days, actually taking the drug 48 of those days after a 48 day break to start Ipi. Unfortunately there is no way to ever tell if the Ipi worked according to my Dr because of me taking the Zel. Something is working though and for that we are very, very, grateful!!!

    I created a Zel timeline w pie charts for my doc to see how much drug I’d taken, and the breaks I’d had. I’ve started an intermittent schedule of two weeks on/one week off to try to reduce side effects and get me off prednisone. And maybe it will prolong the response. I’ve been on pred since dec 14 when I was hospitalized for liver toxicity. ALP was 6x normal. Right now ALP is fine, but AST, ALT and Bili are all up and climbing so this is my one week off. Hopefully what held true in those poor little melanoma mice will work for us too. Squeak squeak.

    Zel side effects still suck. Period. But I have a lot more energy, overall I feel great, and I’m alive!!!

    I’m so thankful for everyone here, their positive stories and encouragement, and we are thanking God for this good news after a rough and scary few months. I have no regrets. Many prayers for continued good news for us all.

    Amy

Viewing 29 reply threads
  • Replies
      buffcody
      Participant

      Amy,

      Really great and hopeful news.  I'm glad you are also sharing how great you are feeling through it all. Can't beat that.   You certainly provide me with hope on the brain front that the ipi treatment may, indeed, (though I read your caution about what is causing it) can impact mets to the brain. Certainly good to see tumors shrinking and not growing.  Even better disappearing.  All the best to you ass you continue your voyage.

      buffcody
      Participant

      Amy,

      Really great and hopeful news.  I'm glad you are also sharing how great you are feeling through it all. Can't beat that.   You certainly provide me with hope on the brain front that the ipi treatment may, indeed, (though I read your caution about what is causing it) can impact mets to the brain. Certainly good to see tumors shrinking and not growing.  Even better disappearing.  All the best to you ass you continue your voyage.

        awillett1991
        Participant
        I had Zel supposedly get rid of this met before, but I think what it really did was just shrink it way down so it lay in waiting to come back. I want these suckers gone! I’m am still hoping Ipi/SRS will kick the other one’s butt completely.
        awillett1991
        Participant
        I had Zel supposedly get rid of this met before, but I think what it really did was just shrink it way down so it lay in waiting to come back. I want these suckers gone! I’m am still hoping Ipi/SRS will kick the other one’s butt completely.
        awillett1991
        Participant
        I had Zel supposedly get rid of this met before, but I think what it really did was just shrink it way down so it lay in waiting to come back. I want these suckers gone! I’m am still hoping Ipi/SRS will kick the other one’s butt completely.
      buffcody
      Participant

      Amy,

      Really great and hopeful news.  I'm glad you are also sharing how great you are feeling through it all. Can't beat that.   You certainly provide me with hope on the brain front that the ipi treatment may, indeed, (though I read your caution about what is causing it) can impact mets to the brain. Certainly good to see tumors shrinking and not growing.  Even better disappearing.  All the best to you ass you continue your voyage.

      POW
      Participant

      Amy, considering how quickly your tumors were starting to progress, seeing no new growth and some shrinkage is marvellous news! That is very, very encouraging! Try to keep your body as healthy as possible with nutritous food and moderate exercise and be patient while the ipi and the Zelboraf do their thing. You go, girl!

      POW
      Participant

      Amy, considering how quickly your tumors were starting to progress, seeing no new growth and some shrinkage is marvellous news! That is very, very encouraging! Try to keep your body as healthy as possible with nutritous food and moderate exercise and be patient while the ipi and the Zelboraf do their thing. You go, girl!

      POW
      Participant

      Amy, considering how quickly your tumors were starting to progress, seeing no new growth and some shrinkage is marvellous news! That is very, very encouraging! Try to keep your body as healthy as possible with nutritous food and moderate exercise and be patient while the ipi and the Zelboraf do their thing. You go, girl!

        awillett1991
        Participant
        Thanks! I already eat lo carb and trying to get my Zel feet under control so I can get back to walking. A girl cam hope!
        awillett1991
        Participant
        Thanks! I already eat lo carb and trying to get my Zel feet under control so I can get back to walking. A girl cam hope!
        awillett1991
        Participant
        Thanks! I already eat lo carb and trying to get my Zel feet under control so I can get back to walking. A girl cam hope!
      aldakota22
      Participant

      Amy will keep you in my prayers for continued response no matter what combination you are using.Looking forward to even better scans next time.Beat the Beast.   Al

        awillett1991
        Participant
        Thanks Al – you are such an inspiration. So glad you take the time to post here for the rest of us.
        awillett1991
        Participant
        Thanks Al – you are such an inspiration. So glad you take the time to post here for the rest of us.
        awillett1991
        Participant
        Thanks Al – you are such an inspiration. So glad you take the time to post here for the rest of us.
      aldakota22
      Participant

      Amy will keep you in my prayers for continued response no matter what combination you are using.Looking forward to even better scans next time.Beat the Beast.   Al

      aldakota22
      Participant

      Amy will keep you in my prayers for continued response no matter what combination you are using.Looking forward to even better scans next time.Beat the Beast.   Al

      Owl
      Participant

      Oh Amy, these are very good news, still reponding to Z and I am sure that Ipi will kick in as well. All the best to you, you are such a wonderful fighter! Jenny

      Owl
      Participant

      Oh Amy, these are very good news, still reponding to Z and I am sure that Ipi will kick in as well. All the best to you, you are such a wonderful fighter! Jenny

      Owl
      Participant

      Oh Amy, these are very good news, still reponding to Z and I am sure that Ipi will kick in as well. All the best to you, you are such a wonderful fighter! Jenny

      Mickey n Jo
      Participant

      Amy, that's such great news! Wishing you continued success. Also, we'd like to thank you for your kind responses to our posts. All the best.   Jo

        awillett1991
        Participant
        You’re welcome. I’m glad to share anything I’ve learned. I’m just paying it back from what I’ve learned here.
        awillett1991
        Participant
        You’re welcome. I’m glad to share anything I’ve learned. I’m just paying it back from what I’ve learned here.
        awillett1991
        Participant
        You’re welcome. I’m glad to share anything I’ve learned. I’m just paying it back from what I’ve learned here.
      Mickey n Jo
      Participant

      Amy, that's such great news! Wishing you continued success. Also, we'd like to thank you for your kind responses to our posts. All the best.   Jo

      Mickey n Jo
      Participant

      Amy, that's such great news! Wishing you continued success. Also, we'd like to thank you for your kind responses to our posts. All the best.   Jo

      Richard_K
      Participant

       

      Amy,

      So happy to hear this progress.  Ipi?  Zel?  Your attitude?  Whatever the combination, it’s working.  Keep it up.

      Dick

      Richard_K
      Participant

       

      Amy,

      So happy to hear this progress.  Ipi?  Zel?  Your attitude?  Whatever the combination, it’s working.  Keep it up.

      Dick

        awillett1991
        Participant
        Planning on it Dick! I hope you are feeling better. I have 3 school age kids and a new tamiflu RX right here waiting. How is your bilirubin?
        awillett1991
        Participant
        Planning on it Dick! I hope you are feeling better. I have 3 school age kids and a new tamiflu RX right here waiting. How is your bilirubin?
        Richard_K
        Participant

         

        Bilirubin was fine six weeks ago.  I was scheduled for scans and doctor visit early this week but had to reschedule doctor until next week because of flu.  Scans came out fine and fingers are crossed for next week when bilirubin will be tested, thanks for asking.

        I hope your tamiflu RX ends up collecting dust.

        Dick

        Richard_K
        Participant

         

        Bilirubin was fine six weeks ago.  I was scheduled for scans and doctor visit early this week but had to reschedule doctor until next week because of flu.  Scans came out fine and fingers are crossed for next week when bilirubin will be tested, thanks for asking.

        I hope your tamiflu RX ends up collecting dust.

        Dick

        Richard_K
        Participant

         

        Bilirubin was fine six weeks ago.  I was scheduled for scans and doctor visit early this week but had to reschedule doctor until next week because of flu.  Scans came out fine and fingers are crossed for next week when bilirubin will be tested, thanks for asking.

        I hope your tamiflu RX ends up collecting dust.

        Dick

        awillett1991
        Participant
        Planning on it Dick! I hope you are feeling better. I have 3 school age kids and a new tamiflu RX right here waiting. How is your bilirubin?
      Richard_K
      Participant

       

      Amy,

      So happy to hear this progress.  Ipi?  Zel?  Your attitude?  Whatever the combination, it’s working.  Keep it up.

      Dick

      Swanee
      Participant

      Hi Amy,

      Wishing you continued success with your treatment, this is great news and I am so happy for you!  Thanks for taking the time with details, helps so many in a variety of ways!  Thanks for remembering the mice too : )  we're all part of the universe!

      Take care and keep posting!

      Swanee

      Swanee
      Participant

      Hi Amy,

      Wishing you continued success with your treatment, this is great news and I am so happy for you!  Thanks for taking the time with details, helps so many in a variety of ways!  Thanks for remembering the mice too : )  we're all part of the universe!

      Take care and keep posting!

      Swanee

        awillett1991
        Participant
        Thanks – squeak. squeak!
        awillett1991
        Participant
        Thanks – squeak. squeak!
        awillett1991
        Participant
        Thanks – squeak. squeak!
      Swanee
      Participant

      Hi Amy,

      Wishing you continued success with your treatment, this is great news and I am so happy for you!  Thanks for taking the time with details, helps so many in a variety of ways!  Thanks for remembering the mice too : )  we're all part of the universe!

      Take care and keep posting!

      Swanee

      DeniseK
      Participant
      GREAT NEWS!! The shrinking is awesome even in the brain, I bet your feeling a lot better. Glad you can tolerate the z better. You too are an inspiration Amy! β™₯
      Have you tried the benofotami ne (spelling) really works well for energy.
      Take Care and here’s to continued success!!
      Denise
      DeniseK
      Participant
      GREAT NEWS!! The shrinking is awesome even in the brain, I bet your feeling a lot better. Glad you can tolerate the z better. You too are an inspiration Amy! β™₯
      Have you tried the benofotami ne (spelling) really works well for energy.
      Take Care and here’s to continued success!!
      Denise
        Snickers60
        Participant

        Great report Amy !!!   Hope you can keep on keeping on.    WHat encouragement ! 

        BLESSINGS,

        Nancy (Devoted wife of 3 X warrior Wayne) 

        Snickers60
        Participant

        Great report Amy !!!   Hope you can keep on keeping on.    WHat encouragement ! 

        BLESSINGS,

        Nancy (Devoted wife of 3 X warrior Wayne) 

        NYKaren
        Participant
        Such great news, Amy. Very happy for you.
        Are you still on Pred? I started today on 5mg day for severe pain & tenderness around elbow, so I was wondering about your dose.
        Wishing u continued great news.
        Karen
        NYKaren
        Participant
        Such great news, Amy. Very happy for you.
        Are you still on Pred? I started today on 5mg day for severe pain & tenderness around elbow, so I was wondering about your dose.
        Wishing u continued great news.
        Karen
        awillett1991
        Participant
        Karen,
        starting Dec21 I was on 20, then 10, then 7.5, now 6 mg, trying to taper off. Dr wants me off completely, to give Ipi a better chance. Says if I’m still here in 10 yrs, we’ll know the Ipi worked πŸ˜‰

        I was on 5 mg for months w Zel only and didn’t have any trouble with it. My dr refuses the 480 dose, says it doesnt work, and would rather have me take it on and off at 720.

        I also take 2 Aleve twice a day for the remaining aches and pains. Elbows & joints are under control now but we shall see…

        awillett1991
        Participant
        Karen,
        starting Dec21 I was on 20, then 10, then 7.5, now 6 mg, trying to taper off. Dr wants me off completely, to give Ipi a better chance. Says if I’m still here in 10 yrs, we’ll know the Ipi worked πŸ˜‰

        I was on 5 mg for months w Zel only and didn’t have any trouble with it. My dr refuses the 480 dose, says it doesnt work, and would rather have me take it on and off at 720.

        I also take 2 Aleve twice a day for the remaining aches and pains. Elbows & joints are under control now but we shall see…

        awillett1991
        Participant
        Karen,
        starting Dec21 I was on 20, then 10, then 7.5, now 6 mg, trying to taper off. Dr wants me off completely, to give Ipi a better chance. Says if I’m still here in 10 yrs, we’ll know the Ipi worked πŸ˜‰

        I was on 5 mg for months w Zel only and didn’t have any trouble with it. My dr refuses the 480 dose, says it doesnt work, and would rather have me take it on and off at 720.

        I also take 2 Aleve twice a day for the remaining aches and pains. Elbows & joints are under control now but we shall see…

        NYKaren
        Participant
        Such great news, Amy. Very happy for you.
        Are you still on Pred? I started today on 5mg day for severe pain & tenderness around elbow, so I was wondering about your dose.
        Wishing u continued great news.
        Karen
        awillett1991
        Participant
        Nancy,

        Thanks and looking forward to hearing a good report on Wayne!

        Amy

        awillett1991
        Participant
        Nancy,

        Thanks and looking forward to hearing a good report on Wayne!

        Amy

        awillett1991
        Participant
        Nancy,

        Thanks and looking forward to hearing a good report on Wayne!

        Amy

        Snickers60
        Participant

        Great report Amy !!!   Hope you can keep on keeping on.    WHat encouragement ! 

        BLESSINGS,

        Nancy (Devoted wife of 3 X warrior Wayne) 

        NYKaren
        Participant
        Denise,
        How much benof (whichamacallit) do u take? I take 250 mg 2x/day. I’m not really energized but i think i only have slight neuropathy because if it. Thanks!
        Karen
        NYKaren
        Participant
        Denise,
        How much benof (whichamacallit) do u take? I take 250 mg 2x/day. I’m not really energized but i think i only have slight neuropathy because if it. Thanks!
        Karen
        NYKaren
        Participant
        Denise,
        How much benof (whichamacallit) do u take? I take 250 mg 2x/day. I’m not really energized but i think i only have slight neuropathy because if it. Thanks!
        Karen
        awillett1991
        Participant
        THanks Denise! Can’t add anything else to my diet, etc right now – having liver trouble still BC of Ipi/Zel. I’d like to try this sometime though!

        Best of luck to you!

        Amy

        awillett1991
        Participant
        THanks Denise! Can’t add anything else to my diet, etc right now – having liver trouble still BC of Ipi/Zel. I’d like to try this sometime though!

        Best of luck to you!

        Amy

        awillett1991
        Participant
        THanks Denise! Can’t add anything else to my diet, etc right now – having liver trouble still BC of Ipi/Zel. I’d like to try this sometime though!

        Best of luck to you!

        Amy

      DeniseK
      Participant
      GREAT NEWS!! The shrinking is awesome even in the brain, I bet your feeling a lot better. Glad you can tolerate the z better. You too are an inspiration Amy! β™₯
      Have you tried the benofotami ne (spelling) really works well for energy.
      Take Care and here’s to continued success!!
      Denise
      Tina D
      Participant

      It is so good to read this. I know the road has been unbelievable rough and only you and yours can truly KNOW just how rough. I am thankful for the good results. I am praying that your new dosing schedule will decrease the side effects and that your tumors will continue to melt away and be gone forever πŸ™‚

      Take Care!

      Tina

      Tina D
      Participant

      It is so good to read this. I know the road has been unbelievable rough and only you and yours can truly KNOW just how rough. I am thankful for the good results. I am praying that your new dosing schedule will decrease the side effects and that your tumors will continue to melt away and be gone forever πŸ™‚

      Take Care!

      Tina

        awillett1991
        Participant
        Thanks Tina! Praying you are feeling better and Ipi will work its magic. Check out ErinMays PD1 post – she is seeing an Ipi response!

        BELiEVE!

        Amy

        awillett1991
        Participant
        Thanks Tina! Praying you are feeling better and Ipi will work its magic. Check out ErinMays PD1 post – she is seeing an Ipi response!

        BELiEVE!

        Amy

        Tina D
        Participant

        Thanks Amy! I went over and read her exciting news πŸ™‚  . I am feeling pretty good. Still get tired some, but stronger each day. Surgeon released me today unless I have further problems. My Dr put me on Tamiflu to try to prevent me getting the flu bug from my ailing family. SO thankful to be feeling well.

        Tina

        Tina D
        Participant

        Thanks Amy! I went over and read her exciting news πŸ™‚  . I am feeling pretty good. Still get tired some, but stronger each day. Surgeon released me today unless I have further problems. My Dr put me on Tamiflu to try to prevent me getting the flu bug from my ailing family. SO thankful to be feeling well.

        Tina

        Tina D
        Participant

        Thanks Amy! I went over and read her exciting news πŸ™‚  . I am feeling pretty good. Still get tired some, but stronger each day. Surgeon released me today unless I have further problems. My Dr put me on Tamiflu to try to prevent me getting the flu bug from my ailing family. SO thankful to be feeling well.

        Tina

        awillett1991
        Participant
        Thanks Tina! Praying you are feeling better and Ipi will work its magic. Check out ErinMays PD1 post – she is seeing an Ipi response!

        BELiEVE!

        Amy

      Tina D
      Participant

      It is so good to read this. I know the road has been unbelievable rough and only you and yours can truly KNOW just how rough. I am thankful for the good results. I am praying that your new dosing schedule will decrease the side effects and that your tumors will continue to melt away and be gone forever πŸ™‚

      Take Care!

      Tina

      JerryfromFauq
      Participant

      Wonder how this relates to the interesting articlee I read recently (Think I posted about here).  Basically it said that in some work that is boing done regarding how/why tumors develop a work around against some targeted chemos.  This early work showed that after a period of time if the targeted drug is stopped for a brief spell the cancer stops modifying it's resistance mechanism and changes back towards it's previous pathways, reducing the workaround effects.  The restart of the meds then attacks the restart instead of ignoring the restart.     Interesting thought.  Did you see my posting of the study?

      JerryfromFauq
      Participant

      Wonder how this relates to the interesting articlee I read recently (Think I posted about here).  Basically it said that in some work that is boing done regarding how/why tumors develop a work around against some targeted chemos.  This early work showed that after a period of time if the targeted drug is stopped for a brief spell the cancer stops modifying it's resistance mechanism and changes back towards it's previous pathways, reducing the workaround effects.  The restart of the meds then attacks the restart instead of ignoring the restart.     Interesting thought.  Did you see my posting of the study?

        awillett1991
        Participant
        Jerry – didn’t see your post but Maybe this is the same thing I posted about from Nature, where the mel infected mice that were dosed on/off zel lived over 200 days vs the mice continually dosed were all dead at 100 days. I started wondering. How much Zelboraf have I taken? At what dosage? How much time have I been on and off the drug and when? I have been on and off alot. I scavenged data out of my online medical records, put together a timeline, created pie charts, and downloaded everything onto my iPad. I took it to my appointment. It was awesome. Dr is looking it over I hope.

        Amy

        awillett1991
        Participant
        Jerry – didn’t see your post but Maybe this is the same thing I posted about from Nature, where the mel infected mice that were dosed on/off zel lived over 200 days vs the mice continually dosed were all dead at 100 days. I started wondering. How much Zelboraf have I taken? At what dosage? How much time have I been on and off the drug and when? I have been on and off alot. I scavenged data out of my online medical records, put together a timeline, created pie charts, and downloaded everything onto my iPad. I took it to my appointment. It was awesome. Dr is looking it over I hope.

        Amy

        awillett1991
        Participant
        Jerry – didn’t see your post but Maybe this is the same thing I posted about from Nature, where the mel infected mice that were dosed on/off zel lived over 200 days vs the mice continually dosed were all dead at 100 days. I started wondering. How much Zelboraf have I taken? At what dosage? How much time have I been on and off the drug and when? I have been on and off alot. I scavenged data out of my online medical records, put together a timeline, created pie charts, and downloaded everything onto my iPad. I took it to my appointment. It was awesome. Dr is looking it over I hope.

        Amy

      JerryfromFauq
      Participant

      Wonder how this relates to the interesting articlee I read recently (Think I posted about here).  Basically it said that in some work that is boing done regarding how/why tumors develop a work around against some targeted chemos.  This early work showed that after a period of time if the targeted drug is stopped for a brief spell the cancer stops modifying it's resistance mechanism and changes back towards it's previous pathways, reducing the workaround effects.  The restart of the meds then attacks the restart instead of ignoring the restart.     Interesting thought.  Did you see my posting of the study?

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