Paraprotein news

This topic contains 20 replies, has 13 voices, and was last updated by  Helen 12 years, 2 months ago.

Viewing 15 posts - 1 through 15 (of 21 total)
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  • #93401

    andyg
    Participant

    Hi everyone.
    I haven't posted much lately as I haven't had much news to share – I still don't – but I have been keeping up on everyone's news. Most of the news lately has been good though there has been some struggles. It's a strange sort of place I'm in a kind of limbo with my emotions at times swinging from jealousy of those who are progressing well in their fight to sadness for those who are struggling.
    I received my latest pp results yesterday and they have reduced to 32 now – not a great reading but the lowest I've achieved since diagnosis. I see Prof Jackson again on the 11th but I expect to be kept on CRD until there is some progression. Before then we're having a break in the lakes – must remember the brollies 😉

    Keep up the fight
    Wishing you all well
    Andy

    #93402

    eve
    Participant

    Hi Andy
    I would love you to come on here and say my pp are down I can look forward to SCT,and I can understand your frustration,Slim has taken a long time to get were he is now.We have the added problem,that month by month we could not tell if it was working,only the BMB were giving us a true reading,with the experts telling us this is very unusual.He is there now Andy 20 months down the line from starting treatment.So take heart, you will get there it,s just when.

    Enjoy your break love Eve

    #93403

    BADGER
    Participant

    Hi Andy

    keep up the good fight I am sure you will get there in the end I hope you enjoy your holiday in the lakes i hope you can relax for a time it will do you good
    Love Jo x

    #93404

    Ali
    Participant

    Hi Andy

    Nice to hear from you, the pps are going in the right direction for you.

    Brollies and wellies I reckon, have a lovely break away 🙂

    Love Ali xx

    #93405

    OutdoorsPaul
    Participant

    Hi Andy
    Stick with it mate because it has taken me 3 different sorts of treatment in 12 months to get me to and through the SCT.They will get you to a point where you are ready for SCT.
    Enjoy the lakes and maybe a Guinness or two?
    cheers paul

    #93406

    Vicki
    Participant

    Andy

    Keep your chin up….at least the pps are going in the right direction. You have a lot to fight for. You have been so supportive to Colin and I so we need you to stick with it. :-). I get what you say about the mixed emotions, and the highs and lows. It must be hard for you because the progress is slow……but it is progress now :-).

    I'm sure professor wotshisname will have a cunning plan for you to follow. Enjoy your holiday and have a few glasses of something…..there will be something to celebrate soon, I'm sure of it.

    Best wishes

    Vicki and Colin x

    #93407

    tmc
    Participant

    Hi Andy
    will think about you on the 11th
    In the meantime enjoy the Lakes
    Love Teresa

    #93408

    DaiCro
    Participant

    Hi Andy,

    It's a matter of slow, slow, drip, drip, slow for you at the moment but as folks have pointed out it's in the right direction. Your frustration levels must be extremely high but much better than the alternative.8-)

    I am sure that Prof. Jackson will come up with something to get you onto the SCT programme but in the meantime enjoy your small jaunts and pub visits. I am sure you would have enjoyed my pub in Fishguard with its folk sessions, live music and award winning real ales… but alas I had to give it all up thanks to MM and now I can't even enjoy a few pints… perhaps a couple of halves but I don't bother… and neither do I miss it, which I wouldn't have thought possible.:-0

    Whatever it takes brother… and it seems that patience and belief are the order of the day for the moment… and really, they are not big asks, as frustrated as you might be.;-)

    Dai.

    #93409

    mhnevill
    Participant

    Hi Andy

    Sorry your journey is proving a long one, but at least you are bashing those PPs down.

    Keep up the good fight. We are all rooting with you.

    Best wishes.

    Mavis

    #93410

    Dizzyliz
    Participant

    Hi andy,

    Hope this weather were having follows you to the lakes! Enjoy and keep well!

    Thinking about you on the 11th

    Love liz & kev xx

    #93411

    tom
    Participant

    Hi Andy

    You are getting their slowly am afraid but getting their non the less 😀

    Keep them going the correct way and Trust me you wont need a brollies as I am told you dont get wet inside a Pub??? well I do but it is the inside 😀

    Have a great Time and relax with a pint or two.

    Tom "Onwards and Upwards" x

    #93412

    andyg
    Participant

    Hi everyone.
    Thanks for all the posts. It's a strange old disease this mm if it wasn't for my back I wouldn't know I was ill. Oh and besides the drugs side effects which luckily I don't suffer too badly from. All my fiends say when I meet them that I look well! I'm even getting my taste for beer back – though the hangovers are a little to easily achieved :-/ Food isn't a problem either at the moment. I'm looking forward to sampling a few ales in the lakes hopefully in the beer gardens. It'll be good for Steph to get away from work and relax for a while.
    Unfortunately I've been told due to all the different drugs I've been on and not responded to my bone marrow will have been to damaged to be able to produce enough stem cells for an auto transplant. So the plan is for me to stay on the regime I'm on till the mm starts to show some progression and then to try a different cocktail. With an allo transplant – if a match can be found – further down the line. I'll have more details after I've seen Prof Jackson on the 11th.
    Thanks for all your support.
    Looking forward to a sunny break 🙂
    All the best
    Andy

    #93413

    Helen
    Participant

    Hi Andy
    I'm there on the 11th too, let me know when you get there?
    Love Helen

    #93414

    Vicki
    Participant

    Andy

    Enjoy your break away with steph, and the beer. We think the weather is looking good for a while so no brollies!

    Good luck with the treatment regime.professor Jackson will have a plan, they mostly do 🙂

    Vicki and Colin x

    #93415

    Perkymite
    Participant

    Hi Andy, Sorry to hear that you cannot go down the Allo route. There is a train of thought that it is overrated anyway and the pure drug route gives more remission – I have not got a clue I leave all that up to the experts:-D .

    Enjoy the Lakes Mo and I had a great walking holiday there many, many years ago. The weather was terrible but we still had a great time, just got wet outside as well as in ! 😎 .

    Kindest regards – vasbyte

    David

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