sallylewis1

  • BADGER replied to the topic I feel so miserable! in the forum Newcomers 12 years, 1 month ago

    Kerry just let it out ot must be so hard for you to see Melvin suffer so much and the children must be suffering to not knowing what will happen to their belooved dad you sound a strong person so i am sure you will get through this
    Love AND A (((HUG))
    jO

  • Hi Andy

    glad your readings are a bit better hopefully you will find a match so you will be able to go ahead with your SCT
    kEEP WELL
    Love Jo

  • Hi jean

    PP levels definitely don't need to be zero…they were going to do mine when mine were at 28 still!! And they had only halved from 50! I am pleased that I got down to 8 when I had my transplant, but 0 definitely shouldn't be a requirement. They probably just want to check he has plateau'd before they make the decision…but I would…[Read more]

  • Debs replied to the topic Velcade and Cold Feet in the forum Side-effects 12 years, 1 month ago

    Thanks John.

    One of the issues is that when you're on trials like the Myeloma XI trial, they won't let you have it sub-cutaneously (or at least they wouldn't a year ago when I was on it!!)

    Not sure about how much revlimid is known to cause PN so need to ask more at my appointment next month….didn't think it was a major side…[Read more]

  • Debs replied to the topic Velcade and Cold Feet in the forum Side-effects 12 years, 1 month ago

    Hi Megan.

    I was on velcade too and found that cold feet were the start of neuropathy. So glad that Phil has had the dose reduced as I tried to stick it out and it got worse and worse, to the point I had to have medications to try to relieve the pain…and they didn't always work! Luckily 6 months post velcade/ SCT things started to improve and…[Read more]

  • Debs replied to the topic Public Swimming Pools in the forum General 12 years, 1 month ago

    Hmmm… I hadn't even thought about it and have to say that I went swimming after about 6 months as my kids were desperate to go with us, and I was sick of making excuses of why I couldn't do things with them all the time. I spend my life around snotty nosed kids coming over to play and so can't really miss these things.

    This summer we went to…[Read more]

  • Hi Sarah Jane

    I am quite close to you as I live in High Wycombe!

    I was diagnosed in 2009 with SMM and then progressed to treatment about a year later (although I now get treated at the Marsden in Surrey). I also was put onto the Myeloma XI trial in November 2010 and got revlimid first time. It worked for me for 4 weeks and then I plateau'd…[Read more]

  • BADGER replied to the topic Public Swimming Pools in the forum General 12 years, 1 month ago

    Hi NETTIE
    I have been swimming a lot at my local pool go early in the morning before all the kids get in got a throuat infection once I thought it could have came from the pool but not sure just try not to get water in your mouth its a bit unconfortable but I do breast stroke with my head out of the waater
    Love Jo:-P

  • BADGER replied to the topic velcade in the forum Newcomers 12 years, 1 month ago

    Hi Michael
    sorry to hear about Jo same name as me I had cdt when first daignosed in jan 2009 could not have SCT due to renal failure it actually worked for me I was in full remission until the beginning of this year my PP's are still very low but my light chains are rising so due to my damaged kidneys I will have to start Velcade sooner than most…[Read more]

  • Hello Kerry

    So sorry to hear about melvin what a shock for you both most of us here are over 50 so I can imagine how heart breaking it is to be diagnose under 40 you must be wondering what next we here are all at different stages and we dont give up i know you will give Melvin strength to get through this
    Good luck Jo

  • Hi Helen
    gosh whooping cough is something you expect to get when a child it shows how vunerable we are even to childhood illness I had shingles and thought that if you had had chicken pox you couldnt get it how wrong was I its true whooping cough is on the increase I dont know why because I havent heard about it for years now hope you feel better…[Read more]

  • BADGER replied to the topic Blue Badge in the forum General 12 years, 1 month ago

    Hi Pat
    Try Mcmillan they gave me a form and the Mcmillan nurse in the hospital signed it for me you doc will probably sign yours as he suggested it its a real help if if you are feeling unwell a lot of places charge in carparks but you usually get a space you can also park on yellow lines upto 3 hours good luck
    Love Jo x

  • Debs replied to the topic Sad news in the forum Under 50s 12 years, 1 month ago

    Dear Rachel,

    I am so shocked and just want to wish you all my thoughts as you deal with the loss of Paul. I remember him first coming to this site…he was always so very positive and you must have been so proud of him.

    I don't come on here often at the moment, but know that when I did, he was always there supporting people.

    Thinking of…[Read more]

  • BADGER replied to the topic Low Blood Counts in the forum Treatment 12 years, 1 month ago

    Hi Keith

    glad you are feeling better at the moment bit of a nuisence out the bloods have you thought about a transfusion i have had a few they do make you feel a bit better dont think it will effect sugars or any thing it might buck you up for the next round of treatment stay well
    love Jo x

  • hello Dia

    I am so glad you are back with us wow! you have been through the mill but I believe you are a surviver thinking off you:-)
    Love Jo x

  • BADGER replied to the topic Spoke too soon! in the forum Side-effects 12 years, 1 month ago

    hi Vicki
    glad you laughed at the legging or as my husband says "that is just not a good look" went to see Henrey Blofelt the cricket commentator the other night he had us rolling with laughter it certainly does you good
    Love Jo x

  • BADGER replied to the topic Spoke too soon! in the forum Side-effects 12 years, 1 month ago

    Hello Pat
    sorry you have not been well bit of a b+++gger glad you are feeling a bit better now co codamol are good but they may make you constipated so back on the syrup of figs!!!! if its not one end its the other I have know people to defer treatment to go on holiday so i bet its possible I dont think you are a wimp all these treatment are…[Read more]

  • Hello Jean
    like the new photo of you and Frank how is he doing at the moment any news about his SCT is it soon will mail you soon
    love Jo x

  • Hello Emma

    what a terrible shock for you all I dont think anyone really gets over it we just learn to live with it the trearments now are so much better than even 10 years ago with new ones coming on every couple of years you will get some really good advice here and the myeloma help line is a god send they seem to be able to answer most…[Read more]

  • BADGER replied to the topic A year on in the forum General 12 years, 1 month ago

    HI Andy
    glad you enjoyed your hols I bet you got the cold from the airplane that often happens to me I have taken to putting vaseline in nose it seems to form a barrier well thats one year over I am sure you will kick the devil into touch we must all stay strong and stubborn;-)
    Keep well
    Jo x

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