Another trip on the roller coaster

FormerMember
FormerMember
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To recap, I was doing fine at 2 years plus post-transplant. At my recent outpatients, they didn't like my blood counts, so I was called in for a bone marrow biopsy. The full results aren't back (they don't have the genetic profile yet, if that is the right term) but there are leukaemia cells there. The plan is that I go back in for 4-6 weeks and have some 'mild' chemo and some lymphocytes. They will see how I do on that, though they have to check first if I am fit enough, so ECG on Friday.  Alternative is twice weekly visits to outpatients for maintenance treatment - I really don't fancy that at all.  I felt consultant was cautiously optimistic that I wouldn't have to do the whole SCT cycle again.

Lots of packing to do.

Tessa

  • FormerMember
    FormerMember in reply to markyflem

    Thinking of you Tessa xx

  • FormerMember
    FormerMember in reply to FormerMember

    The drugs they have put me on are daily tablets Hydroxycarbamide. Plan is to give me Azacitadine injections 5 days out of 28.

    Tessa

  • FormerMember
    FormerMember in reply to FormerMember

    Terrible news. Sorry. Praying there is something new out there to treat that bastard AML. I understand there is success with glitertinab for relapsed AML. 

  • FormerMember
    FormerMember in reply to FormerMember

    Hopefully going home today after nearly a month in isolation. Was desparate to get out now seems rather scary. Interesting that my neutrophils gradually climbed high enough even though they were still treating me for an infection. Last IV antibiotics last night as well as top up of platelets and blood. Then out if my bloods are ok this morning. Feels a drastic transition from being all wired up to being released into the wild.

    Tessa

  • Hope you get home today Tessa and all goes well for you x

  • I have my fingers and toes crossed Tessa xx 

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Fingers and toes crossed here too Tessa!

    hugs xxx

    Moomy

  • FormerMember
    FormerMember in reply to moomy

    Hi Tessa,

    I am really pleased that you are hopefully going home - I hope you find it more calming than being in the hospital, but I understand your nervousness too.

    I’m really hoping you get a good run (whatever you would class that as) now Tessa, you definitely deserve it after the past few months.

    Greg

  • FormerMember
    FormerMember in reply to FormerMember

    Slight glitch. i started a sore throat which doctor thought was thrush. Was all ready to go home just waiting on drugs. Then took my temperature again 37.5. So 24 hours IV antibiotics and all the tests again. However better than getting home and having to come straight back. Maybe that was why I had instinct I shouldnt go yet. Truly a rollercoaster.

    Tessa

  • Oh Tessa, the ups and downs of this..... but with temperature best to be where you are, but let’s look for this to calm down and you get home for some rest.

    ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

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