Daughter in maintenance

FormerMember
FormerMember
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Hi. 

My17 year old daughter is 3 months from end of treatment for B cell ALL. 
She seems to have chemo holds every 4 weeks, as her neutrophils drop, or her billiruben is too high. This time, she’s been on hold for 4 weeks.

My question is, should she be having time added to the end of treatment for all the chemo she’s missed?? I read that for every dose of any chemo missed, increases the risk of relapse.

Anyone have any advice??

Thsnks in advance x

  • Hi , I just noticed your post and thought I would drop in past from our NHL group.

    When it comes to blood cancer treatments delays for infections and other medical reasons are normal. During my main chemo 3 of my 6 cycles were put back between 7 to 14 days..... my team said that there most likely would be no need to add further treatment but would review at the end of treatment and indeed I did not need extra..... but I was moving into Stem Cell Transplant.

    The main people with the answers are your daughters medical team so do talk with them.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi, 

    Im actually about three months away from commencing maintenance treatment for B cell ALL treatment!! So my question is is she already on maintenance? Although I'm not quite there yet, I was informed it would be easier and any missed doses wouldn't have to be made up. Although like I say take that with a pinch of salt as I haven't stated that yet.

    Hope everything goes ok. You could try asking your team, I'm sure they will be more than happy to help!

    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

  • FormerMember
    FormerMember in reply to nbck112

    Hi

    She’s 3 months from end of treatment. I’ve spoken to her consultant today, and he said they don’t make up missed doses.

    maintenance is much easier than frontline treatment, although there’s still ups and downs. Good luck with the rest of your treatment xxx

  • FormerMember
    FormerMember in reply to Thehighlander

    Hi

    thanks for replying.

    Ivdid speak to her consultant today.

    Thanks x

  • I'm glad she's finishing so soon and hopefully life can get back to normal for her. 

    All the best for you both!!

    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

  • FormerMember
    FormerMember in reply to FormerMember

    Hi what’s the maintenance stage like?

  • FormerMember
    FormerMember in reply to FormerMember

    It’s daily tablets, two different types on a Wednesday, (counts permitting) with 4 weekly vincristine and steroids, and 12 weekly lumba punctures, although my daughter doesn’t have the vincristine and steroids, as they made her quite ill.

  • FormerMember
    FormerMember in reply to FormerMember

    thanks for the reply. Does normal life resume?