jackiecollins

  • piatkaz replied to the topic failed allo in the forum Treatment 11 years, 11 months ago

    Hi Tom

    good luck with the x-ray I'm sure it's nothing you didnt look that old on fb with the skipping rope nimble feet you still have
    Ian

  • piatkaz replied to the topic failed allo in the forum Treatment 11 years, 11 months ago

    Hi Tom
    I came out of hospital last week 48hrs after op and doing really well just got a few aches from where they stretched my spine for the op.The neck injury just started after falling a sleep in a transport car 3 months ago just shows what damage this pesky MM does to your bones without you knowing it.
    Onwards and upwards
    Ian

  • piatkaz started the topic failed allo. in the forum Treatment 11 years, 11 months ago

    Hi all just to let you know my mini allo has officially failed,found a fracture in my neck vertebrae C6 so had surgery last week removed 90% of the vertebrae and put a cage in and plated it to C5 & C7,the biopsy showed active lession and also now lightchains in blood are increasing.When area to operation has healed i will have radio therapy on…[Read more]

  • piatkaz replied to the topic Penny Lane in the forum End of Life and Grief 12 years ago

    So sad to hear this such a wonderful bubbly women and friend RIP

  • piatkaz replied to the topic Swollen ankles in the forum General 12 years, 1 month ago

    Thanks for all the replies,Hi Bridget it seems the swollen ankles were due to being prescribed naproxen by my GP when my specialist heard I was on Naproxen (anti inflamatory drug) he made me stop taking it straight away and my ankles have returned to normal.I'm on codiene now due to firstly falling a sleep in the transport car and having a very…[Read more]

  • piatkaz started the topic Swollen ankles. in the forum General 12 years, 1 month ago

    Hi all
    Just wondering if anyone has had any issues with swollen ankles I'm on revlamid as a maint drug at the moment and have slight neuropathy.

    Thanks Ian

  • piatkaz replied to the topic Mini Allo Update in the forum Treatment 12 years, 1 month ago

    Thanks Mavis

  • piatkaz replied to the topic Mini Allo Update in the forum Treatment 12 years, 1 month ago

    Thanks Tom

  • piatkaz started the topic Mini Allo Update. in the forum Treatment 12 years, 1 month ago

    Hi
    Just thought I would let people know how my mini allo is going,Had it in June 2011 and been to see specialist today (28/03/2012) and I seem to be one of the lucky ones I'm still disease free had a few issues with GVHD mainly skin issues rashes skin peeling off the palms of my hands, itchy scalp but no hospital stays yet feel extremely lucky.
    Ian

  • piatkaz replied to the topic allogeneic SCT in the forum Treatment 12 years, 2 months ago

    Hi Shirley

    I'm feeling really well at the moment I had issues with gvhd but mainly skin issues itchy palms and all the skin peeling off,itchy eyes,skin all over coated in a red rash still a very slight red tinge on my chest had a skin biopsy to prove it was gvhd.I have been lucky that it hasnt got to my organs so far so have been lucky havent…[Read more]

  • piatkaz replied to the topic allogeneic SCT in the forum Treatment 12 years, 2 months ago

    Hi Penny

    I had an auto in January 2011 then a mini allo in June (brothers cells)It's been 9 months since my allo and at the moment all is still going really well,but as Shirley says you've got to watch out for the gvhd.The mini allo is designed to reduce the chances of the gvhd of which I've had three bouts of but all minor.ask as many…[Read more]

  • Hi Helen
    I found from past experiences they never offered me a sedation but when I asked they were only to willing to give me one,I had bad experiences with the last 2 BMB's thats why the last one was done under sedation and what a difference didnt feel a thing it was all like a dream.
    I had an Auto in Jan 11 then my mini in June 11 using my…[Read more]

  • Hi Helen and John
    I havent heard the connection between MM and prostate cancer the only thing I've heard is using maintenance drugs for long periods may possibly cause secondary cancers.Them Bone Marrow Biopsies arent pleasant I had 5 without sedation but the last one I used sedation it was so better so it will be sedation from now on.
    The only…[Read more]

  • piatkaz replied to the topic Mini Allo Transplant in the forum General 12 years, 4 months ago

    Hi Wendy
    Portugal hopefully is a good omen also my brother has just gone over there to live so theres another coincidence all the best with that.
    When ever I've discussed the outcome with my specialist he's always said there a 20% chance of a cure and a much better chance of a long remission with this treatment.If you ever decide to go ahead…[Read more]

  • piatkaz replied to the topic Mini Allo Transplant in the forum General 12 years, 4 months ago

    Hi Wendy
    I was talking to my trial nurse today and she said they havent checked for chromosomal abnormalities but she would check it out with my specialist,on another note I was given my results from my 6 monthly bone marrow biopsy and was told I'm disease free at the moment so all going to plan after the mini allo.
    Ian

  • piatkaz replied to the topic Mini Allo Transplant in the forum General 12 years, 4 months ago

    Hi Wendy
    Welcome to the mini allo journey,the whole purpose of the mini allo is to reduce the chances of getting serious GVHD they remove the T cells from your donor cells and they dont give you the Melphalan they give a more gently chemo as the specialist said its just to punch a hole in your immune system.They have mirrored the treatment used…[Read more]

  • piatkaz replied to the topic Mini Allo Transplant in the forum General 12 years, 6 months ago

    Hi Shirley.

    Its 90+ days post my mini allo using my brothers cells just got all my results back from the bone marrow biopsy I am still in complete remission my immune system is now 99% my brothers and my T cells are 95%,I've had low forms of gvhd (even had a skin biopsy to prove it) red skin rashes itchy eyes and itchy scalp,hoping to be really…[Read more]

  • piatkaz replied to the topic Mini Allo Transplant in the forum General 12 years, 7 months ago

    Hi Wendy
    I had an auto in Jan this year then had my mini allo in June At present I'm doing very well had issues with Graft versus host which included red and itchy skin all over my body and itchy scalp.My allo was a sibling donor (my brother).I know this is a difficult decision to make but mine was very aggresive and my hospital doesnt normally…[Read more]

  • Hi Bridget

    Hope all goes well and they sort that pain out
    Look after yourself
    Ian x

  • Hi Bridget

    Hope all goes well and they sort that pain out
    Look after yourself
    Ian x

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