CharlieStanyer

  • Hi Leza
    So sorry, it is a journey. I cannot understand why,mwhen you are diagnosed, you are not given a questionnaire. Lifestyle, occupation, diet so they can develop some sort of overall,perspective. All Charlie was asked, “Did you work in the petroleum industry?” That was it. There must be a common denominator and how can they find that out…[Read more]

  • Stanstan replied to the topic High Myeloma Incidence in the forum Off topic 8 years ago

    Hi Richard

    2 out of the 3 we knew in a our village on the Island were Electrical Engineers, one was a Telecom Engineer. I worked with an electrical firm for a year!!!???
    Totally confused. Another friend, was a postman. Maybe there is nothing to relate anything with. Maybe all questions should be asked. Diet, life style, job. Etc etc. x x

  • Stanstan replied to the topic High Myeloma Incidence in the forum Off topic 8 years ago

    Hi Jeff

    There has to be some common denominator. A friend of ours who investigated it in depth, while she was suffering from it, felt it was plastics and would have nothing with plastic at all. That is so difficult these days.
    Don’t know, chemicals or areas. Wouldn’t it be wonderful to be able to work it out.

    X x

  • Stanstan replied to the topic High Myeloma Incidence in the forum Off topic 8 years ago

    Hi Jeff
    We were living in a village on the Isle of Wight when Charlie was diagnosed. We knew at least 4 people in the village with Myeloma and many more across the Island. When we moved back to Potters Bar in Hertfordshire, we registered at the doctors, he had 2 students from Cambridge with him at our consultation, he said to them, I will only see…[Read more]

  • Stanstan replied to the topic Hair re-growth after SCT? in the forum Side-effects 8 years ago

    Hi Everyone
    Great to be back on the site. Wow
    My hair took quite a few weeks to grow back, when it did, I was curly.
    I have always had straight hair. Now, at the back of my head especially, it just curls.
    My son said, “Do something with your hair, it is awful”. I went for a hair cut!!!

    Onwards and Upwards as Tom says.
    Charlie

  • Stanstan posted an update 8 years ago

    @Tom hi Tom
    How is everything? We have been unable to get on the site for months as the signal is so bad where we have moved to. How was your Stem Cell? How is everyone, totally lost ouch.

    • tom replied 8 years ago

      Hi Charlie
      Well it has been a long time for you,
      SCT well that lasted four years, came back December last year been having chemo since February this year first it was was Velcade and Dex nthat failed on cycle four just done cycle five and they have added chyclomoside to tat start that tomorrow morning, apart from that I feel good apart from…[Read more]

  • Hi Tom and Everyone.
    Hope you are doing OK. Need Tom’s positive attitude.
    Love Us x x

  • So glad you are doing well Tom. That is the power of positive thinking. Do they say when the sct will be?

    Thanks for keeping us all Upwards and Onwards.
    Love Charlie and Mary

  • Hi Tom
    How are you, just got on the site on iPad. Let us know.
    Love Charlie and Mary x x

  • Hi Everyone.
    My computer will not let me get in to reply to the messages from this site. It is so irritating.
    Anyway Tom and Steve, sorry. I am fine at the moment on Revlamid. Touch Wood.
    I have just had a phone call because we have moved, they are transferring me from Southampton to Addenbrookes. Does anyone else go there? Is it good? Isn’t it…[Read more]

  • Stanstan changed their profile picture 8 years, 3 months ago

  • Stanstan changed their profile picture 8 years, 3 months ago

  • Hi Tom
    How is it going? haven’t been on line for months so have missed so much. Glad to be back.
    How is everything now Tom?
    Upwards and Onwards
    Charlie

  • Stanstan replied to the topic Partial Remission in the forum General 8 years, 3 months ago

    Hi Stephen
    Had my SCT in August last year. Partial remission, like you on Revlamid and staying at 14 ish.
    Just had my childhood injections. Where did you go on holiday? Was it all OK while you were away?

    Best Wishes
    Charlie

  • Best of luck Tom. Hope it really goes well. Onwards and Upwards. Thinking of you. Love Us x x

  • Stanstan started the topic Where do we go? in the forum General 8 years, 5 months ago

    Hi Everyone
    We have not been on the site for so long as we sold our house on the Isle of Wight and are now staying with friends until we move. We have found a house in Bedfordshire and southampton hospital have given us a choice of Addenbrookes, Northampton and Kettering or Buckinghamshire. Does anyone know about any of these?
    Charlie had stem…[Read more]

  • Stanstan replied to the topic Are we new ?? in the forum General 8 years, 5 months ago

    Hi Tom
    Are you OK? Have missed your positivity. Have no computer as we moved too. No home yet.
    Soon hopefully. Missed everyone from the site.

    Love Charlie and Mary

  • Stanstan replied to the topic After Stem Cell in the forum General 9 years, 1 month ago

    Hi Everyone
    Not been on for a while, thanks for all your help and hope everyone is OK.
    We have been away looking after our grandchildren. Stem Cell still planned for early July. Paraproteins were 13.2 at the end of April now they are non detectable. What does this mean? Has anyone else gone down like that?
    Doing fine on Velcade so…[Read more]

  • Stanstan replied to the topic After Stem Cell in the forum General 9 years, 2 months ago

    Hi Tony

    Thanks, it is great to know that I won't have to keep the dogs away totally. Can't wait until it is all over. Are you in remission?

    Love Us x:-S

  • Stanstan replied to the topic After Stem Cell in the forum General 9 years, 2 months ago

    Trying to relax. The doctor gave me pills but I am not taking them.
    Can't wait for cleaning etc. Charlie's Neutrophils are 2.4 at the moment and paras are 13.4 – Nightmare. I shall practice cleaning before he goes in hospital in July. I am trying to arrange a separate room downstairs he can stay in. Upwards & Onwards!!!

    Love Us x

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