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Hi everyone, hope you are all doing well wherever you are at with your treatment 

I was diagnosed at the end of June 2020 with ALL which was a bit of a shock to say the least but getting on with treatment the best I can! Treatment been pretty good for me so far up until my current cycle (ukall14 protocol consolidation phase daunorubicin/vincristine/asparaginaise) where it seems to have hit me like a tonne of bricks. I’m am so incredibly fatigued I’m struggling to keep my eyes open most of the day and spent the last 10 days in bed. Usually if I’ve felt lethargic/dizzy it’s been due to my haemaglobin level being low but they are ok. Did anyone else feel like this during consolidation?

thanks in advance for your input

Jodie x 

  • Hi

    Welcome to the ALL forum but of course sorry to hear about your diagnosis. I had the ALL back in 2012 and trialled the UKALL14 treatment at that time. From memory you are on the 3rd phase. The treatment really hit me in the latter stages of the 2nd round as I didn't cope well with the intrathecal chemos which made me sick and when my platelets dropped I suffered with the BK virus.

    Round 3 I found ok during the treatment although I did react to the asparaginase (pancreatitis) which they have since found out is a potential side effect and I am sure they mange it much better now. I found it was just the accumulation of each round just tired me out and also I became more sensitive to my HGs counts dropping. As soon as I dropped below about 8.5 I was asking for a transfusion as I knew the dizziness and fatigue would get quickly worse. Barts were really good at topping me up as they realised that I could tell when I needed it rather than them just looking at the bloods. But yes the tiredness was total fatigue for a while. However once I had finished each round I did regain my strength fairly quickly. Sleep if you feel tired.. Your body is going through a lot. there will be plenty of time after you have completed the treatment to do lots of things !

    I went on to have a stem cell transplant in May 2013 and I lead a very normal life now and do everything I did pre ALL.. Well perhaps a bit slower but I am now 9 years older at 51!

    Any questions feel free to ask.

    Paul

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  • Hi Paul and thank you for coming back to me! Glad to see you are doing well post treatment and stem cell transplant! 

    Sorry to hear of the hurdles you faced during treatment. BK virus I’ve never heard of but sounds unpleasant as well as the pancreatitis. I’ve managed to handle the intrathecals quite well... my biggest problem was the 24hr methotrexate which gave me horrendous colitis and inflamed my liver and pancreas. Other than that it’s just been the usual nausea and low counts! I’m the same as you, I tend to know when my hg count is dropping as the dizziness sets in and my team are also pretty on the ball with getting my transfused when I need it. 

    yeah I’m trying to just sleep when my body tells me but that seems to be 24/7 at the moment! I wake in the morning and my eyes are so heavy I feel I haven’t slept in a week! I’m hoping at the end of this cycle I start to perk back up a bit. 

    thanks for taking the time to reply to my message, it’s very much appreciated! Hope you are managing to stay safe during these times

    Jodie x 

  • Hi Jodie,

    Hope things are going well! I was diagnosed July 2020 so not long after you! I've just commenced cycle 3 of consolidation on Monday and was warned by my team that whilst I sailed through this part during induction 1 this could be a little more difficult as I've had so much now. I barely got any symptoms before consolidation except for the expected low blood counts and an infection. Didn't even get the usual nausea and barely got any tiredness through induction 1 and 2 and intensification was fine for me.

    However since starting consolidation, from cycle 1 I've had nausea, mouth ulcers, lost all my hair, struggled more with fatigue, another infection and my counts seem to take longer to bounce back. So it all sounds normal to me and my team doesn't seem overly concerned.

    Still for peace of mind don't hesitate to bring this up with your team, I'm sure they would be more than happy to help!!

    Are you going the maintenance route? I can't wait to finish consolidation, hoping maintenance will be kinder!!!

    Diagnosed July 2020 with Acute Lymphoblastic Leukaemia

    Started UKALL14 0.1% refractory disease noted after consolidation on MRD

    Started Blinatumomab August 2021and achieved MRD negative

    Disease escaped bone marrow and went to breast

    Due to have FLAG-IDA then onto stem cell transplant

    Nbk112

  • Hi Jodie,

    How have you been getting on?

    Diagnosed July 2020 with Acute Lymphoblastic Leukaemia

    Started UKALL14 0.1% refractory disease noted after consolidation on MRD

    Started Blinatumomab August 2021and achieved MRD negative

    Disease escaped bone marrow and went to breast

    Due to have FLAG-IDA then onto stem cell transplant

    Nbk112

  • Hey! Thanks for your replies and apologies for taking so long to come back... my journey so far sounds very similar to yours! Rounds 1 & 2 were pretty uneventful, I felt well and hardly had any symptoms whatsoever but as you say, as time has gone on and you become less resilient, you start to feel it! Nausea, sickness, tiredness, achy joints etc. Just started my next round of treatment today and I usually start to feel nauseous in the PM so I’m relaxing on the sofa bracing myself! How are you getting on? 

  • No worries at all!! It really takes it out of you doesn't it? 

    That's good you've started your next round, getting there now. Where abouts are you up to? 

    Ive just finished week 4 of consolation cycle 3, my bloods are technically good enough to commence weeks 5&6 but my consultant thinks it's a good idea to delay a week first to ensure they stay at a good level as they are on a downward trend. 

    Little upsetting as I'm sure you can relate just want to get onto maintenance, although to be fair think my body needs the break!! 

    Do you have any fun plans for when you ready and able again?

    Diagnosed July 2020 with Acute Lymphoblastic Leukaemia

    Started UKALL14 0.1% refractory disease noted after consolidation on MRD

    Started Blinatumomab August 2021and achieved MRD negative

    Disease escaped bone marrow and went to breast

    Due to have FLAG-IDA then onto stem cell transplant

    Nbk112

  • Oh it really does! You don’t understand do you unless you are actually going through it! 
    I am not far ahead of you! I’m cycle 3 week 5... have you just done the daunorubicin/vincristine and the steroids for 4 weeks? My bloods were same as yours... they were technically ok but my hb kept dropping and my liver function was high so gave me another week to recover! definitely take the break especially after that round, your body will thank you for it! Lol

    Not as of yet no... been feeling that rubbish I was just focused on getting through the day! Plus I’m having some other issues too so just want to get those sorted! How about yourself?