Full Update (quick)
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Full Update (quick)

› Forums › General Melanoma Community › Full Update (quick)

  • Post
    • September 1, 2014 at 3:49 am
    MattF
    Participant

    Been a while….

    Stage IV since Dec 2013

    BRAF Combo effectie fail after 6 months.

    on 3rd infusion of Ipi next week.

     

    Recent scans (July) showed 7 new spots on the brain. 

    Start RadioSurgery on Tues 2 Sep 2014….

    Still on Ipi and Xgeva for other tissue and bone mets.

     

    So the brain mets…largest being 1.9cm x 1.5cm are the closest alligator to the canoe now and the immediate issue.

    So the plan is in place.

    Matt

    oh as a side note anemic with low hemoglobin over the last 14 days needing 2 blood transfusions…so that also is of course on our radar.

     

Viewing 14 reply threads
  • Replies
      • September 1, 2014 at 1:04 pm
      ecc26
      Participant

      Wishing you the best of luck going forward. Radiosurgery isn't too bad. I was very tired and slept most of the resto of the day after both of my rounds of SRS, but otherwise didn't have any side effects (except I now have 2 sets of small dents in my skull where the screws attached the frame. Oh well…)

      I have my first round of scans Tuesday (tomorrow) since starting the Merk EAP. I've been feeling really good, but I have a pretty poor history of brain mets continually popping up, so I'm nervous about the MRI. I'll be pretty happy once these scans are competed and the results available. Crossing my fingers that the results allow me to continue on the program!

      • September 1, 2014 at 1:04 pm
      ecc26
      Participant

      Wishing you the best of luck going forward. Radiosurgery isn't too bad. I was very tired and slept most of the resto of the day after both of my rounds of SRS, but otherwise didn't have any side effects (except I now have 2 sets of small dents in my skull where the screws attached the frame. Oh well…)

      I have my first round of scans Tuesday (tomorrow) since starting the Merk EAP. I've been feeling really good, but I have a pretty poor history of brain mets continually popping up, so I'm nervous about the MRI. I'll be pretty happy once these scans are competed and the results available. Crossing my fingers that the results allow me to continue on the program!

      • September 1, 2014 at 1:04 pm
      ecc26
      Participant

      Wishing you the best of luck going forward. Radiosurgery isn't too bad. I was very tired and slept most of the resto of the day after both of my rounds of SRS, but otherwise didn't have any side effects (except I now have 2 sets of small dents in my skull where the screws attached the frame. Oh well…)

      I have my first round of scans Tuesday (tomorrow) since starting the Merk EAP. I've been feeling really good, but I have a pretty poor history of brain mets continually popping up, so I'm nervous about the MRI. I'll be pretty happy once these scans are competed and the results available. Crossing my fingers that the results allow me to continue on the program!

      • September 1, 2014 at 2:16 pm
      BrianP
      Participant

      Thanks for the update Matt.  Best of luck tomorrow.  Sounds like you have a good plan.

      Brian

      • September 1, 2014 at 2:16 pm
      BrianP
      Participant

      Thanks for the update Matt.  Best of luck tomorrow.  Sounds like you have a good plan.

      Brian

      • September 1, 2014 at 2:16 pm
      BrianP
      Participant

      Thanks for the update Matt.  Best of luck tomorrow.  Sounds like you have a good plan.

      Brian

      • September 1, 2014 at 2:45 pm
      arthurjedi007
      Participant

      Nothing else I can add Matt. Just hang in there. You are a fighter. Best of luck.

      Artie

      • September 1, 2014 at 2:45 pm
      arthurjedi007
      Participant

      Nothing else I can add Matt. Just hang in there. You are a fighter. Best of luck.

      Artie

      • September 1, 2014 at 2:45 pm
      arthurjedi007
      Participant

      Nothing else I can add Matt. Just hang in there. You are a fighter. Best of luck.

      Artie

      • September 1, 2014 at 7:40 pm
      Bubbles
      Participant

      Hang in there, Matt!!!!  You are a tough cookie!  Wishing you my best!  Celeste

      • September 1, 2014 at 7:40 pm
      Bubbles
      Participant

      Hang in there, Matt!!!!  You are a tough cookie!  Wishing you my best!  Celeste

      • September 1, 2014 at 7:40 pm
      Bubbles
      Participant

      Hang in there, Matt!!!!  You are a tough cookie!  Wishing you my best!  Celeste

      • September 2, 2014 at 2:17 pm
      jualonso
      Participant

      Hi Matt,

       

      I hope you are doing well with ipi

      Now im going probably go start the path as you, i hope we can go to NED status, will be great

      Could you tell me the dosage of Ipi you are doing? 3 mg/kg or 10 mg/kg?

      Jualonso

        • September 9, 2014 at 3:59 pm
        marjie01
        Participant

        Matt, I wish you the best – you are really a warrior!

        I actually just came upon your early posts from 2012 and conversation with Janner and others about your headaches. My husband is 72 and had a WLE for a melanoma on his shoulder in March. For the past month he has had severe headaches and pink, itchy lumps appearing (but some disappearing) on his neck (at first I thought he meant on his scalp). 

        I am worried and believe I'm going to have to be his advocate because he has had memory loss for a couple of years. He did have a non-contrast MRI 18 months ago for his memory loss and it was clear, so I'm pinning my hopes on this. 

        At any rate, he hasn't received a pathology report. So today I called his derm's nurse – he has an appointment in 2 weeks and I can go in with him, with my questions.  

        You are really an inspiration, and I'm so glad you have been posting here. 

        • September 9, 2014 at 3:59 pm
        marjie01
        Participant

        Matt, I wish you the best – you are really a warrior!

        I actually just came upon your early posts from 2012 and conversation with Janner and others about your headaches. My husband is 72 and had a WLE for a melanoma on his shoulder in March. For the past month he has had severe headaches and pink, itchy lumps appearing (but some disappearing) on his neck (at first I thought he meant on his scalp). 

        I am worried and believe I'm going to have to be his advocate because he has had memory loss for a couple of years. He did have a non-contrast MRI 18 months ago for his memory loss and it was clear, so I'm pinning my hopes on this. 

        At any rate, he hasn't received a pathology report. So today I called his derm's nurse – he has an appointment in 2 weeks and I can go in with him, with my questions.  

        You are really an inspiration, and I'm so glad you have been posting here. 

        • September 9, 2014 at 3:59 pm
        marjie01
        Participant

        Matt, I wish you the best – you are really a warrior!

        I actually just came upon your early posts from 2012 and conversation with Janner and others about your headaches. My husband is 72 and had a WLE for a melanoma on his shoulder in March. For the past month he has had severe headaches and pink, itchy lumps appearing (but some disappearing) on his neck (at first I thought he meant on his scalp). 

        I am worried and believe I'm going to have to be his advocate because he has had memory loss for a couple of years. He did have a non-contrast MRI 18 months ago for his memory loss and it was clear, so I'm pinning my hopes on this. 

        At any rate, he hasn't received a pathology report. So today I called his derm's nurse – he has an appointment in 2 weeks and I can go in with him, with my questions.  

        You are really an inspiration, and I'm so glad you have been posting here. 

      • September 2, 2014 at 2:17 pm
      jualonso
      Participant

      Hi Matt,

       

      I hope you are doing well with ipi

      Now im going probably go start the path as you, i hope we can go to NED status, will be great

      Could you tell me the dosage of Ipi you are doing? 3 mg/kg or 10 mg/kg?

      Jualonso

      • September 2, 2014 at 2:17 pm
      jualonso
      Participant

      Hi Matt,

       

      I hope you are doing well with ipi

      Now im going probably go start the path as you, i hope we can go to NED status, will be great

      Could you tell me the dosage of Ipi you are doing? 3 mg/kg or 10 mg/kg?

      Jualonso

Viewing 14 reply threads
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