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emergency bone marrow. Petrified of results.

Did t know where else to turn today. I had my routine check up today and my counts have all drastically dropped. Doctor says it's either the valganciclovir I was on a couple of weeks ago which attacks bone marrow or its leukaemia in which case there will be nothing they can do other than extending life.
I'm 34 with 2 babies fur goodness sake how can this be happening? Not that it should happen to anyone.
They did an emergency bone marrow and results will be in by next Wednesday clinic but I can't stop thinking about leaving my kids and husband and how they will cope.
All positivity drained

Comments

  • Hi Josie,

    It's completely understandable that your mind is racing while you have to wait for your results and it must have been very scary to have seen your counts drop like that. I'm so sorry.

    Chiara from the patient experience team has sent you a private message with an offer to get in touch if you'd like to speak to someone on the phone. We want to support you in anyway we can; you're not alone in this.

    Best Wishes,

    Billie
  • Thanks Billie I have e nailed Chiara xx
  • Hi Josie

    Just want to wish you well and to say good luck for next Wednesday.

    Best wishes, Peter.
  • Hi Josie,

    I really hope it turns out to be a false alarm and the marrow biopsy comes back as normal. Good luck on Wednesday. I have recently been through a similar episode of falling counts and am having my 6 month biopsy next week. I was suffering with MDS rather than leukaemia so a different scenario but the medical team haven't been overly concerned. My consultant advised that counts can fluctuate dramatically in the months post transplant for a number of reasons (medication, infections, alcohol etc) so I really hope that this is the case for you.

    Try and stay positive. I know it is difficult but it sounds like you have a lot to carry on fighting for.

    All the best,

    Rob.
  • Hi Josie,

    Fingers crossed for positive news on Wednesday. I hope it can be put down to the medication and that your bone marrow recovers and your counts start to rise again.

    Sending positive thoughts to you.

    Steve
  • Well, sadly it's not the meds. The leukaemia has returned already so we are looking at options to give me as much time as possible. First priority is to get well and get home from hospital to be with my husband and children. Thanks for all you ongoing support
  • Hi Josie,

    I just wanted to reiterate that the patient team are here to support you. I know you have Chiara's details so please feel free to contact her if you need to, she'd be glad to hear from you. I'm so sorry to hear your news.

    If we can do anything to help you and your family please let us know.

    Billie

  • Josie,

    I saw your message yesterday and honestly didn't know what to write at the time. I still don't know what to say but felt I had to say something. Clearly I'm upset and so sorry to hear your news and my heart goes out to you and your family. I'll pray that your medical team are able to find a solution and that things take a turn for the better.

    I read back through your earlier posts and I saw that you had some difficulties getting on top of the AML initially and that there were perhaps complications over and above that made it difficult. I hope that you and your medical team will persevere and that you are given another chance to kick this, for the sake of you and your young family.

    You are well and truly in my thoughts and I wish you all the best.

    Kindest regards,

    Steve
  • Dear Josie
    I am so, so sorry to hear your news and I'm ashamed to say that I'm finding it difficult to even imagine what you are going through. I can only echo the heartfelt sentiments already posted.

    Just a thought and I hope that the timing doesn't seem inappropriate but I wonder if you are familiar with Mindfulness. Although it isn't for everyone it does offer a toolkit of skills that seem useful for helping us to live alongside considerable challenge. I don't know where you are geographically, but more and more oncology/ haematology/ specialist palliative care centres across the UK are running courses and individual sessions for pts and relatives/carers, aimed at helping at times such as this.

    keeping you in mind,
    Kindest Regards
    j
  • Hello Josie I've been reading your comments and can see by the date this was all about a year ago, how are you doing now? I'm hoping you are well ****
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