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  • Post
    • July 11, 2016 at 11:28 pm
    jamieth29
    Participant
    Just wanted to say hi to everyone I’ve been keeping up on board. I hope everyone is doing well or on the way to doing well. Last I was on it think I told everyone of the three brain mets that developed.After srs and 1 dose of ipi/nivo i started to get light headed and new something was going on. 1 of the Mets that was treated hemorrhaged and was causing problems the other 2 shrunk from 6mm to 2mm. I also had 1 new one develop that was 7 mm. So 2 days after ipi/nivon infusion doctors decided to stop immunotherapy and go back to braf because I had such a big response to it prior. After 8 weeks mri showed original 2 and new brain met were not visible on mri. The hemorrhaged met shrunk also and showed no edema. However after about 3 weeks on braf I developed every side effect in book,chills,fever of 104+ loss of appetite change of the way food tasted etc. My local doc thought we should keep on drugs and thus is partly my fault because I knew better but I ended up in hospital for 2 days with low sodium among way walked liver function. I stopped drugs and immediately things returned to normal. Tried to restart after 8 day layoff and same result. So I then took 2 weeks off to gain some wait…Lost about 13# and reduced dose. Made it 2 weeks with no issues then chills and fever. I immediately stopped for 8 days and trying again starting this past Sunday. Had another mri at u of chicago and they think hemorrhaged met in brain may have burst from response to srs. So it’s been a long 2 or 3 months of feeling like crap. Feel great right now and just going one appointment to next, body continues to be clear. Thanks for all info everyone has been posting and support we all give each other.

    Jamie

Viewing 26 reply threads
  • Replies
      • July 12, 2016 at 12:33 am
      BrianP
      Participant

      Wow Jamie.  You've had a hell of a few months.  So glad to hear you are feeling great now.  Hope that continues for you.  Thanks for updating us.

      Brian

      • July 12, 2016 at 12:33 am
      BrianP
      Participant

      Wow Jamie.  You've had a hell of a few months.  So glad to hear you are feeling great now.  Hope that continues for you.  Thanks for updating us.

      Brian

      • July 12, 2016 at 12:33 am
      BrianP
      Participant

      Wow Jamie.  You've had a hell of a few months.  So glad to hear you are feeling great now.  Hope that continues for you.  Thanks for updating us.

      Brian

        • July 12, 2016 at 3:56 pm
        jamieth29
        Participant
        Thanks Brian good to hear from you.
        • July 12, 2016 at 3:56 pm
        jamieth29
        Participant
        Thanks Brian good to hear from you.
        • July 12, 2016 at 3:56 pm
        jamieth29
        Participant
        Thanks Brian good to hear from you.
      • July 12, 2016 at 3:08 am
      JoshF
      Participant

      Great to hear from you Jaimie!! Even better to hear you're doing better Praying for continued better days ahead!! 

      Josh

      • July 12, 2016 at 3:08 am
      JoshF
      Participant

      Great to hear from you Jaimie!! Even better to hear you're doing better Praying for continued better days ahead!! 

      Josh

      • July 12, 2016 at 3:08 am
      JoshF
      Participant

      Great to hear from you Jaimie!! Even better to hear you're doing better Praying for continued better days ahead!! 

      Josh

        • July 12, 2016 at 3:58 pm
        jamieth29
        Participant
        Thanks Josh,I’ve been following what’s going on with and hope the best for you. It’s so hard with the young kids and all like we’ve talked about before. Stay strong and kick some ass!
        • July 12, 2016 at 3:58 pm
        jamieth29
        Participant
        Thanks Josh,I’ve been following what’s going on with and hope the best for you. It’s so hard with the young kids and all like we’ve talked about before. Stay strong and kick some ass!
        • July 12, 2016 at 3:58 pm
        jamieth29
        Participant
        Thanks Josh,I’ve been following what’s going on with and hope the best for you. It’s so hard with the young kids and all like we’ve talked about before. Stay strong and kick some ass!
      • July 12, 2016 at 3:09 am
      Swanee
      Participant

      Glad you're still here with us Jamie and thank you for the update.  Sorry to hear of your hellish past few months, you are a true fighter and a survivor, I can't believe what you have endured and still willing to try more.  Thanks for posting and staying in touch, it does so much for everyone fighting melanoma  to hear of these brave and courageous battles and hear of good places many of us get to.  Wishing you peace and rest and a miraculous recovery from all your hard work…..hopefully a NED status for a forever long time:)

      Swanee

      • July 12, 2016 at 3:09 am
      Swanee
      Participant

      Glad you're still here with us Jamie and thank you for the update.  Sorry to hear of your hellish past few months, you are a true fighter and a survivor, I can't believe what you have endured and still willing to try more.  Thanks for posting and staying in touch, it does so much for everyone fighting melanoma  to hear of these brave and courageous battles and hear of good places many of us get to.  Wishing you peace and rest and a miraculous recovery from all your hard work…..hopefully a NED status for a forever long time:)

      Swanee

      • July 12, 2016 at 3:09 am
      Swanee
      Participant

      Glad you're still here with us Jamie and thank you for the update.  Sorry to hear of your hellish past few months, you are a true fighter and a survivor, I can't believe what you have endured and still willing to try more.  Thanks for posting and staying in touch, it does so much for everyone fighting melanoma  to hear of these brave and courageous battles and hear of good places many of us get to.  Wishing you peace and rest and a miraculous recovery from all your hard work…..hopefully a NED status for a forever long time:)

      Swanee

        • July 12, 2016 at 3:59 pm
        jamieth29
        Participant
        Thank you very much Swanee
        • July 12, 2016 at 3:59 pm
        jamieth29
        Participant
        Thank you very much Swanee
        • July 12, 2016 at 3:59 pm
        jamieth29
        Participant
        Thank you very much Swanee
      • July 12, 2016 at 11:26 am
      rosa1
      Participant

      Wow Jamie, you have been through so much, you're a real fighter!  I pray for continued healing and that those little buggars shrink away to nothing.

      Rosa

      • July 12, 2016 at 11:26 am
      rosa1
      Participant

      Wow Jamie, you have been through so much, you're a real fighter!  I pray for continued healing and that those little buggars shrink away to nothing.

      Rosa

      • July 12, 2016 at 11:26 am
      rosa1
      Participant

      Wow Jamie, you have been through so much, you're a real fighter!  I pray for continued healing and that those little buggars shrink away to nothing.

      Rosa

      • July 12, 2016 at 1:57 pm
      keepthefaith11
      Participant
      Jamie, so glad to hear you are feeling better. Sounds like you have been through one rough ride. My dad just got diagnosed with 13 small brain mets and if you don’t mind me asking a few questions about your journey.

      Did they start the BRAF inhibitors before you did the SRS?
      What made them switch to immunotherapy?
      Also, did you do the BRAF/MEK combo or BRAF by itself?

      Thank you Jamie and wishing you the best!

      Annie

      • July 12, 2016 at 1:57 pm
      keepthefaith11
      Participant
      Jamie, so glad to hear you are feeling better. Sounds like you have been through one rough ride. My dad just got diagnosed with 13 small brain mets and if you don’t mind me asking a few questions about your journey.

      Did they start the BRAF inhibitors before you did the SRS?
      What made them switch to immunotherapy?
      Also, did you do the BRAF/MEK combo or BRAF by itself?

      Thank you Jamie and wishing you the best!

      Annie

      • July 12, 2016 at 1:57 pm
      keepthefaith11
      Participant
      Jamie, so glad to hear you are feeling better. Sounds like you have been through one rough ride. My dad just got diagnosed with 13 small brain mets and if you don’t mind me asking a few questions about your journey.

      Did they start the BRAF inhibitors before you did the SRS?
      What made them switch to immunotherapy?
      Also, did you do the BRAF/MEK combo or BRAF by itself?

      Thank you Jamie and wishing you the best!

      Annie

        • July 12, 2016 at 3:55 pm
        jamieth29
        Participant
        Hi Annie,
        As soon as we found out about the brain mets we immediately started nivo. About a week later I had srs. After about 8 weeks on nivo i had some small spots appear on my leg where I’ve had some in transit spots before so they were not sure if nivo was working. We then decided to switch to ipi/nivo combo and I received 1 dose and then had mri that showed 1 new brain met so then pulled me off that because they wanted to try and stop progression. I was on braf/mek last year and became Ned so they thought a quick response was needed. So yes I went on braf/mek combo and new brain met is not visible on current mri with no srs to that met.
        • July 12, 2016 at 3:55 pm
        jamieth29
        Participant
        Hi Annie,
        As soon as we found out about the brain mets we immediately started nivo. About a week later I had srs. After about 8 weeks on nivo i had some small spots appear on my leg where I’ve had some in transit spots before so they were not sure if nivo was working. We then decided to switch to ipi/nivo combo and I received 1 dose and then had mri that showed 1 new brain met so then pulled me off that because they wanted to try and stop progression. I was on braf/mek last year and became Ned so they thought a quick response was needed. So yes I went on braf/mek combo and new brain met is not visible on current mri with no srs to that met.
        • July 12, 2016 at 3:55 pm
        jamieth29
        Participant
        Hi Annie,
        As soon as we found out about the brain mets we immediately started nivo. About a week later I had srs. After about 8 weeks on nivo i had some small spots appear on my leg where I’ve had some in transit spots before so they were not sure if nivo was working. We then decided to switch to ipi/nivo combo and I received 1 dose and then had mri that showed 1 new brain met so then pulled me off that because they wanted to try and stop progression. I was on braf/mek last year and became Ned so they thought a quick response was needed. So yes I went on braf/mek combo and new brain met is not visible on current mri with no srs to that met.
      • July 13, 2016 at 12:58 pm
      jenny22
      Participant

      Jamie,

      So happy to see your post…I have been wondering how you were doing. So sorry to hear its been such a rough ride the last few months…BUT still so happy to hear from you and that you are feeling better.

      I hope you continue to feel better…please keep us posted and stay in touch!!!!!!

      Best,

      jenny

      • July 13, 2016 at 12:58 pm
      jenny22
      Participant

      Jamie,

      So happy to see your post…I have been wondering how you were doing. So sorry to hear its been such a rough ride the last few months…BUT still so happy to hear from you and that you are feeling better.

      I hope you continue to feel better…please keep us posted and stay in touch!!!!!!

      Best,

      jenny

      • July 13, 2016 at 12:58 pm
      jenny22
      Participant

      Jamie,

      So happy to see your post…I have been wondering how you were doing. So sorry to hear its been such a rough ride the last few months…BUT still so happy to hear from you and that you are feeling better.

      I hope you continue to feel better…please keep us posted and stay in touch!!!!!!

      Best,

      jenny

        • July 13, 2016 at 8:16 pm
        jamieth29
        Participant
        Thanks Jenny good to hear from you also!
        • July 13, 2016 at 8:16 pm
        jamieth29
        Participant
        Thanks Jenny good to hear from you also!
        • July 13, 2016 at 8:16 pm
        jamieth29
        Participant
        Thanks Jenny good to hear from you also!
      • July 13, 2016 at 12:58 pm
      Bubbles
      Participant

      That's been some melanoma madness! Hang in there! Celeste

      • July 13, 2016 at 12:58 pm
      Bubbles
      Participant

      That's been some melanoma madness! Hang in there! Celeste

      • July 13, 2016 at 12:58 pm
      Bubbles
      Participant

      That's been some melanoma madness! Hang in there! Celeste

        • July 13, 2016 at 8:18 pm
        jamieth29
        Participant
        Your right it was madness the weird part is i guess I didn’t realize I was that sick from meds just kept trucking.
        • July 13, 2016 at 8:18 pm
        jamieth29
        Participant
        Your right it was madness the weird part is i guess I didn’t realize I was that sick from meds just kept trucking.
        • July 13, 2016 at 8:18 pm
        jamieth29
        Participant
        Your right it was madness the weird part is i guess I didn’t realize I was that sick from meds just kept trucking.
      • July 13, 2016 at 5:47 pm
      Mat
      Participant

      Jamie, sorry to hear about the recent challenges–but glad to hear that you're doing well!

        • July 13, 2016 at 9:03 pm
        jamieth29
        Participant
        Thanks Matt been following your posts,glad everything is stable. Ipi/nivo is probably my next move or trial.
        • July 13, 2016 at 9:03 pm
        jamieth29
        Participant
        Thanks Matt been following your posts,glad everything is stable. Ipi/nivo is probably my next move or trial.
        • July 13, 2016 at 9:03 pm
        jamieth29
        Participant
        Thanks Matt been following your posts,glad everything is stable. Ipi/nivo is probably my next move or trial.
      • July 13, 2016 at 5:47 pm
      Mat
      Participant

      Jamie, sorry to hear about the recent challenges–but glad to hear that you're doing well!

      • July 13, 2016 at 5:47 pm
      Mat
      Participant

      Jamie, sorry to hear about the recent challenges–but glad to hear that you're doing well!

      • July 13, 2016 at 10:27 pm
      ed williams
      Participant

      Hi Jamie, wow what an adventure!!!!  Melanoma is like going to a fun park when you are a kid, and you have convinced yourself that you won't be scared on the ride called the Zipper( I was 12 years old)  and by about 30 seconds in you are praying for the ride to stop!!!! Best Wishes!!!Ed

        • July 13, 2016 at 11:18 pm
        jamieth29
        Participant
        Haha great analogy Ed.
        • July 13, 2016 at 11:18 pm
        jamieth29
        Participant
        Haha great analogy Ed.
        • July 13, 2016 at 11:18 pm
        jamieth29
        Participant
        Haha great analogy Ed.
        • July 15, 2016 at 10:30 pm
        Maria C
        Participant

        I agree Ed. I hate carnival rides and this is the worst one I've ever been on. Can we jump off? Ready, set, DON'T GO! Hang on!! We have to believe it'll be over soon (or at the very least, we'll get a 3-month break)….

        • July 15, 2016 at 10:30 pm
        Maria C
        Participant

        I agree Ed. I hate carnival rides and this is the worst one I've ever been on. Can we jump off? Ready, set, DON'T GO! Hang on!! We have to believe it'll be over soon (or at the very least, we'll get a 3-month break)….

        • July 15, 2016 at 10:30 pm
        Maria C
        Participant

        I agree Ed. I hate carnival rides and this is the worst one I've ever been on. Can we jump off? Ready, set, DON'T GO! Hang on!! We have to believe it'll be over soon (or at the very least, we'll get a 3-month break)….

      • July 13, 2016 at 10:27 pm
      ed williams
      Participant

      Hi Jamie, wow what an adventure!!!!  Melanoma is like going to a fun park when you are a kid, and you have convinced yourself that you won't be scared on the ride called the Zipper( I was 12 years old)  and by about 30 seconds in you are praying for the ride to stop!!!! Best Wishes!!!Ed

      • July 13, 2016 at 10:27 pm
      ed williams
      Participant

      Hi Jamie, wow what an adventure!!!!  Melanoma is like going to a fun park when you are a kid, and you have convinced yourself that you won't be scared on the ride called the Zipper( I was 12 years old)  and by about 30 seconds in you are praying for the ride to stop!!!! Best Wishes!!!Ed

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