The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

update for my OTBB friends

Forums General Melanoma Community update for my OTBB friends

  • Post
    Amy Busby
    Participant

    Hi all!  Sorry I have not been around much, although quite frankly it doesn't look like I've missed much!  haha

    That was NOT to be taken as a challange to create controversy or heaven forbid start some political bs posts!  Yikes!

    Hi all!  Sorry I have not been around much, although quite frankly it doesn't look like I've missed much!  haha

    That was NOT to be taken as a challange to create controversy or heaven forbid start some political bs posts!  Yikes!

    I just wanted to let you all know I'm still hanging in there with this intrathecial IL2 (into a post directly to the part of the brain that produces the spinal fluid).  It sucks of course but I am able to avoid many of the worst side effects from systemic IL2.  I don't have swelling or water retention so therefore I'm not really in danger of any kind of organ failure, just brain problems and severe naseua / spinal type headaches.  But I've had no seizures or anything.

    My fluid has been coming back clear of mel. the last few weeks and my last scans even showed some lightening of the enhancement in the lining of my brain.  That's called leptomeningial disease (LMD).  They don't really measure it the way you would solid tumors but you can absolutely see it's either shrunk or become less active when you see the pictures.  That's a nice bonus and Dr. Papa says is a pretty unique response since I have not had to added any WBR or Temador or anything.  Straight IL2 like this is more a clear the fluid / stop the progression treatment.  So I'm thrilled about that obviously.  No new body spread either which is a big relief since I've had to be off the GSK BRAF inhibitor.

    I've been more active on facebook lately so ya'll can look for me there – Amy Griggs Busby.  But I am getting the hang of the bb changes so I'll try to pop in more.  Of course I'm peppy now since I have had a brief IL2 break.  Tues I go back in and will then feel like shit and too tired to post, lol.

    Love,

    Amy

    Loading spinner
Viewing 4 reply threads
  • Replies
      Bonnie Lea
      Participant

      Oh Amy so good to see you posting on the BB.  I know you will just be peachy dandy yep…. take care and remember to REST REST and rest somemore, and then do a leeeeetle bit of what ever tween those rest periods.heart

      Loading spinner
      Jackie W
      Participant

      Amy, it sure sounds like good news.  So happy to hear it.  Your spirit as amazing.

       

      Hugs,

       

      Jackie W

      Loading spinner
      Kimmer
      Participant

      Glad to hear that everything is going better for you.  It is a hard battle but you are such a formidable warrior.  Best of luck next week as you just keep kickin' it!

      Take good care, K.

      Loading spinner
        Tracy Chicago
        Participant

        Hi Amy,

        Thanks for posting an update! I'm a fan of your posts and am always in awe of your strength and positive attitude. I wish you all the best in this battle.

        Take Care,

        Tracy

        Loading spinner
      KyCyn
      Participant

      Thanks for the update, Amy, it's always good to see your name!

      Sounds like you are whupping some a** (that's for the board etiquette person, not sure if cussing is allowed or not ;) which isn't surprising at all!

       

      Cyn

      Loading spinner
      Carver
      Participant

      Sorry I'm so late seeing this. You've been very much in my thoughts and good to get an update.This sounds like great news. I'm sorry you have to go through so much but am very glad you are having a favorable response to the treatment. As ever, Carver

      Loading spinner
Viewing 4 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.