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Amyloidosis

Posted , 6 users are following.

gaz6129
gaz6129

I have AL type Amyloidosis and was wondering if anyone out there also suffered from this illness ?

0 likes, 38 replies

38 Replies

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  • Eva88
    Eva88 gaz6129

    Posted

    Hi Gary. How are you? Hope you're feeling ok. Hope the treatment s going ok although I know it's early days. Just want to say 'Hang on in there' It will be worth it.

    Take care

    Eva

    • gaz6129
      gaz6129 Eva88

      Posted

      Hi Eva

      Treatment going ok. I'm now on day 16 of 4th cycle. Been admitted to hospital a couple of times with infections but apart from that I seem to be tolerating the chemo better than the previous two. 

      Good luck with any treatment you need. 

      Any thing you need to know just contact me. 

      I have actually written some articles for the NAC magazine. I could send them onto you but I don't gave your email address. 

      Cheers

      Gary. 

    • Eva88
      Eva88 gaz6129

      Posted

      Hi Gary, how's it going? I will look at your articles at some point, thanks for that. Trying not to overthink it at the moment. Glad you're tolerating the treatment although the infections are a pain. Stay strong. You can do this. I feel ok at the moment apart from the nephrotic syndrome symptoms.

      Keep us posted on progress

      All the best

      Eva

    • gaz6129
      gaz6129 Eva88

      Posted

      Hi Eva

      Got some good news today. After 4 months of being on chemo my light chains have returned to normal levels again so a complete response. 

      I have to stay on the chemo for a while tho to see if my kidney function gets better. 

      At least can celebrate a little tonight ! 

      Cheers

      Gary. 

    • rosemary8446
      rosemary8446 gaz6129

      Posted

      Hi Gary

      What great news ,it makes me feel hopeful for the future.  You have been through so much.

      Enjoy your celebration

      Best wishes

      Rosemary

    • Eva88
      Eva88 gaz6129

      Posted

      Wow Gary 😊

      How fantastic. It's a lot to go through so getting that news is wonderful. Celebrating with you too 😊

      Take care. You give me hope.

      Eva

    • Eva88
      Eva88 gaz6129

      Posted

      Hi Gary

      Just wondering how you are. Are you coping with the treatment OK? It's encouraging to think it might improve kidney function so keep going. Look forward to an update. I have an appt for the NAC in Dec. Bit nervous but after a year of struggling with symptoms it's a step nearer.

      Take care

      Eva

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