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brief update

Forums General Melanoma Community brief update

  • Post
    Amy Busby
    Participant

    Hi all!   Sorry I have not been around much lately.  I see so many (relatively) new people and hate that I haven't been able to share my vast storehouse of melanoma info, lol.  I have been around the block more than a few times.  Now I have failed ipi too.  I decided to first take steps to ease my HIGH pain level and strengthen my hip / femur on the left.  I had good success with the radiation on the right side, so that's what we're doing on the left now.  Lots of fatigue, so not online much lately.

    Hi all!   Sorry I have not been around much lately.  I see so many (relatively) new people and hate that I haven't been able to share my vast storehouse of melanoma info, lol.  I have been around the block more than a few times.  Now I have failed ipi too.  I decided to first take steps to ease my HIGH pain level and strengthen my hip / femur on the left.  I had good success with the radiation on the right side, so that's what we're doing on the left now.  Lots of fatigue, so not online much lately.

    Had a slot lined up for E7080 but who knows if it will be gone in 38 days?  I'd bet that it is.  So I'll be beating the bushes once again hoping a viable treatment option shakes out once I'm done w/ my 10 day course of radiation and passed a 28 day washout.  But first my priority is NOT breaking my hip.  So lots of sitting & people pushing me back & forth to the restroom in my wheelchair.  grrrrrrrr

    Anyone with contact info on trial options send them to me at [email protected].  I'm looking for targeted therapy but often brushed off b/c of prior BRAF study.experience & leptomeningial mets.  But my brain is stable for awhile.

    Love and Encouragement to you all,

    Amy

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  • Replies
      Lori C
      Participant

      Amy, what about the ALT801 trial? Kim in Iowa did it, I think….

      I hope the radiation addresses the pain; high pain levels make everything else pretty much irrelevant, I know.  I'm frustrated to hear you failed ipi; such high hopes for that drug and so many people now seem to be not getting the results they'd hoped for from it.  Maybe in combination with other treatments it will have a higher response rate.

      Anyway, I hope you get lots of viable suggestions for good next steps and will keep you in my prayers.

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      Lori C
      Participant

      Amy, what about the ALT801 trial? Kim in Iowa did it, I think….

      I hope the radiation addresses the pain; high pain levels make everything else pretty much irrelevant, I know.  I'm frustrated to hear you failed ipi; such high hopes for that drug and so many people now seem to be not getting the results they'd hoped for from it.  Maybe in combination with other treatments it will have a higher response rate.

      Anyway, I hope you get lots of viable suggestions for good next steps and will keep you in my prayers.

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      Amy I have followed your story since last January.  I am so sorry for the Ipi failure.  You HAVE been around the block more than a few times. 

      Your strength and hope are inspirational to all of us this board.  I will continue to hold you in my prayers.  May you continue to feel the peaceand love that only God can bring to our hearts. 

      With peace and love,

      Shelly

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      Amy I have followed your story since last January.  I am so sorry for the Ipi failure.  You HAVE been around the block more than a few times. 

      Your strength and hope are inspirational to all of us this board.  I will continue to hold you in my prayers.  May you continue to feel the peaceand love that only God can bring to our hearts. 

      With peace and love,

      Shelly

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      Bonnie Lea
      Participant

      Amy, I will continue to praise God for your life, and all that you have touched, and continue to keep you and your family in my prayers today and always.

       

      your friend

      Bonnie Lea

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      Bonnie Lea
      Participant

      Amy, I will continue to praise God for your life, and all that you have touched, and continue to keep you and your family in my prayers today and always.

       

      your friend

      Bonnie Lea

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      akls
      Participant

      Amy,

      Praying for you.  Hope this helps for your leg pain and hope there is a good trial available when you are done.

      Amy S. in Michigan

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      akls
      Participant

      Amy,

      Praying for you.  Hope this helps for your leg pain and hope there is a good trial available when you are done.

      Amy S. in Michigan

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      Laurie from maine
      Participant

      HI Amy,

      I know you dont know me but you have become my true example of a "melanoma warrior" both in spirit and all you have been thru.  You are wonderful how you support  everyone else.  You are in my prayers every night and I watch for your posts all the time.  I just needed you to know that there are soo many here that wonder about you and pray for you!  thank you for all your support to others, and information that you pass along.

      laurie

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      Laurie from maine
      Participant

      HI Amy,

      I know you dont know me but you have become my true example of a "melanoma warrior" both in spirit and all you have been thru.  You are wonderful how you support  everyone else.  You are in my prayers every night and I watch for your posts all the time.  I just needed you to know that there are soo many here that wonder about you and pray for you!  thank you for all your support to others, and information that you pass along.

      laurie

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      Hi Amy,

      Sorry to hear about all the pain.  I hope you will be able to get that under control soon!  You have come so far in your fight!  I feel something will turn up for you soon.

      Best wishes,

      ellen – dads daughter

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      Hi Amy,

      Sorry to hear about all the pain.  I hope you will be able to get that under control soon!  You have come so far in your fight!  I feel something will turn up for you soon.

      Best wishes,

      ellen – dads daughter

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      lhaley
      Participant

      Amy,

      I hope the radiation takes care of the high pain levels for you. No one should have to deal with the pain!!  You have been such a positive force for everyone here. Sending you prayers for pain relief and for the E7080 slot to remain open for you.

      Linda

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      lhaley
      Participant

      Amy,

      I hope the radiation takes care of the high pain levels for you. No one should have to deal with the pain!!  You have been such a positive force for everyone here. Sending you prayers for pain relief and for the E7080 slot to remain open for you.

      Linda

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      MaryD
      Participant

      Amy – you have been through so much and of course I'll be praying for more options.  In the meantime, hoping that the radiation relieves your pain and that you can regain some strength.

      As always, you continue to inspire all of us!

      Love,

      Mary

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      MaryD
      Participant

      Amy – you have been through so much and of course I'll be praying for more options.  In the meantime, hoping that the radiation relieves your pain and that you can regain some strength.

      As always, you continue to inspire all of us!

      Love,

      Mary

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        Vermont_Donna
        Participant

        Dear Amy,

          So sorry to hear that ipi didnt work. I hope that you start feeling better soon and are able to get that pain under better control. You are such a strong and brave woman!

        hugs,

        Vermont_Donna, stage 3a and currently doing ipi

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        Vermont_Donna
        Participant

        Dear Amy,

          So sorry to hear that ipi didnt work. I hope that you start feeling better soon and are able to get that pain under better control. You are such a strong and brave woman!

        hugs,

        Vermont_Donna, stage 3a and currently doing ipi

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      LynnLuc
      Participant

      Are they doing whole body or a specific target area with radiation?  Are they giving you Temodar or something along with the radiation? They gave me Temodar during the second week of radiation with the thought being it made the melanoma more receptive to the radiation…it is what Mayo recommended at any rate…I don't hear of many Melanoma patients doing radiation and I actually think I benefited from it…I had it in my mediasteinem area…so I didn't get whole body.

      Have you looked into Anti-PD-1 trials yet?

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      LynnLuc
      Participant

      Are they doing whole body or a specific target area with radiation?  Are they giving you Temodar or something along with the radiation? They gave me Temodar during the second week of radiation with the thought being it made the melanoma more receptive to the radiation…it is what Mayo recommended at any rate…I don't hear of many Melanoma patients doing radiation and I actually think I benefited from it…I had it in my mediasteinem area…so I didn't get whole body.

      Have you looked into Anti-PD-1 trials yet?

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      Alli
      Participant

      Amy,

       

      I don't know if you would remember me….Alli from Magnolia who was diagnosed with Vulvar in 2007.  I spoke to you briefly then & told me the best thing I can do it stay away from the board since my prognosis was so good.  This is the first time I have checked in on here in almost a year and I am in total shock!!  I am so sorry to read your update. I will pray your pain is controlled. If you ever need anything I am literally right around the corner.  Please email me anytime.

      Alli Lee

      [email protected]

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      Alli
      Participant

      Amy,

       

      I don't know if you would remember me….Alli from Magnolia who was diagnosed with Vulvar in 2007.  I spoke to you briefly then & told me the best thing I can do it stay away from the board since my prognosis was so good.  This is the first time I have checked in on here in almost a year and I am in total shock!!  I am so sorry to read your update. I will pray your pain is controlled. If you ever need anything I am literally right around the corner.  Please email me anytime.

      Alli Lee

      [email protected]

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      Nancy
      Participant

      My dear Amy,  Please know that I love you … as so many others here do the same…

      Sincerely,

      Nancy/Maryland

       

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      Nancy
      Participant

      My dear Amy,  Please know that I love you … as so many others here do the same…

      Sincerely,

      Nancy/Maryland

       

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