Phelps Lorraine

  • Lolly posted an update 3 years, 6 months ago

    Hi everyone
    My husband Steve got diagnosed in March 2013

    He has recently been in extreme pain in his right shoulder. MRI revealed

    Avascular Necrosis … we are now waiting to see a orthopaedic surgeon

    Has anyone else had this condition in the shoulder ?

    Thanks lolly

  • Lolly and Profile picture of janwjanw are now friends 4 years, 2 months ago

  • Hello Debbie
    My husband steve is also on the XL trial
    The vorinstat also was stopped , with no notice
    Very little information from hospital

    We have never received s letter from the trial office

    Steve really struggled when it was stopped , mentally he found it really difficult

    Lorraine.

  • Lolly replied to the topic Side effects in the forum Side-effects 6 years, 10 months ago

    Hi jan
    Good to hear from you 🙂
    Steve is on lenomide can’t spell it and vorinstat

    His sensations come and go , and says it a cold feeling from deep within
    Also I notice his voice is weak at certain times in the month

    Did you read the article, in the mail on Sunday about mm

    Are you taking drugs at the moment ?

    Xxx

  • Lolly started the topic Side effects in the forum Side-effects 6 years, 10 months ago

    Hi everyone
    My husband Steve got diagnosed in march 2013

    After treatment and SCT he is in remission and currently on a drug trial

    What I like to ask you all is , Steve often says he has a sensation of coldness coming from within his body

    Does anyone have these symptoms ?

    We have spoken to consultant but he did not seem to know what Steve…[Read more]

  • Lolly replied to the topic Worried in the forum General 6 years, 10 months ago

    Hi Vicki
    So sorry to read your posts .. As others have said really hope Colin can come home soon..
    Thinking of you both
    Lolly xxx