clarabell

  • Hi Gaye/Min,

    Thanks for all the info I think I am going to give Ellen a call. Unfortunately Dad didn't start his CTD today as they felt best to wait another week until his chest is better, I will take your advice Min and perhaps seek another form of antibiotics if required. We have been down to the Royal Free who were most helpful and diagnosed…[Read more]

  • Thanks so much only me, I extend a best wishes to you and your mum tomorrow and hope she has a relatively straight forward course of CTD with as little side effects as possible, I will keep up with your journey and hopefully we can offer support to one another as our parents progress with treatment, Clara x

  • Thankd Bridget,

    Yes I did mean Thalidomide just not spelling it correctly so many new words to learn however Thalidomide is one I am familiar with but just can't spell it!. Hopefully Dad will get started tomorrow on CTD and I'll keep you posted. Thanks for your help, I think Dad is to get the Parmidronate as I think that was what was mentioned…[Read more]

  • Hi Everyone,

    I have already been welcomed when on other threads and thought I'd start my own. My Dad was diagnosed with AL Amyloid 2 weeks ago in London. They hadn't had all test results and we were told AL wasn't cancer but treated in the same way with CTD. We went this week to our local hospital to discuss CTD with the plan to start treatment…[Read more]

  • clarabell replied to the topic Am new on here! in the forum Newcomers 13 years, 2 months ago

    Hi All,

    Angie I hope I'm not gate crashing your thread, it does sound like my Dad and your Mum are at the same stage, My Dad is also due to start CTD on Tuesday, don't know whether this will happen as he has a chest infection. I see your Mum has been on steroids and perhaps my Dad might need some of these also. I do know that we have been told…[Read more]

  • clarabell replied to the topic Am new on here! in the forum Newcomers 13 years, 3 months ago

    Hi Angie, I'm in the same position, my dad has just been diagnosed so trying to read up and take in as much info as possible, yes i am now googling words and treatments that are completely alien and trying to digest what they mean and what different levels indicate. Its is a lot to try and take in but I'm using this forum and reading posts that…[Read more]

  • Hi,

    On here for the fist time, Dad was told he had AL amyloid 2 weeks ago and had bone marrow biopsy taken 6 weeks ago. Up until today we were told he did not have cancer. On meeting a consultant to start a course on tablet chemo today it was briefly mentioned about myeloma, we were told that we should know this from bone marrow biopsy, news to…[Read more]