Husband has ALL

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Last August my fit and well husband had a seizure and was diagnosed with ALL. He coped amazing with the stages of chemo on the ALL 60+ protocol and got into remission very  quickly, he was just going into the 2 year maintenance stage when his bloods started playing up. Everytime he was on 6- Mercaptopurine his counts plummeted and he had to have breaks for them to recover then restart at lower dosages. Six weeks ago he caught Covid, he had the antivirals very quickly but didn’t seem to recover properly. I then noticed he was very weak on left side. Went into hospital and after tests they told us 4 weeks ago that the cancer has crossed the blood/brain cell barrier, he has brain metastasis. 
The prognosis is not good, no treatment as chemotherapy doesn’t help and they think radiation will only prolong his life a short time with a less quality of life. They told us 4-6 weeks is the average prognosis , they sent him away with dexamethasone to reduce swelling and anti seizure tablets. We have been contacted by palliative care nurses who now ring once a week.

But he has been very well during the last 4 weeks, better than he has been since before his diagnosis no side effects from steroids other than a massive appetite  so we as a couple and our family have been doing lots of things. Weekends away, lots of meals out, VIP tickets to football and a couple of parties.He is enjoying life more than anytime in the last 2 years.

I really don’t know what to expect, I think I am more frightened then he is, will he deteriorate suddenly or will it be gradual. I am being to dread being away from home but we have a holiday booked for July and he is adamant he is going. 

  • Hi AJ.

    I am so sorry for the situation you and your husband are facing. I cannot even begin to imagine all of the emotions and fear that you are feeling right now.

    I am in a different situation to you as my daughter is being treated for the same Leukaemia but on a Teenage Cancer Trust unit and she was only diagnosed 6 days ago so we are currently only on day 2 of her induction block of chemo.

    I am scared myself, as a mother it is hard to watch your child go through so much and it must be unbearably difficult for you helping your husband through his own journey.

    I think you are doing the right things and cherishing your time together and living in the moment and not thinking too far ahead. All doctors can tell us are statistics and your husband is more than a statistic and his journey will be different from anything anyone else experiences.

    Whilst he is well make the most of every day and I do think that when we know time is finite we do love, live and laugh harder than we ever have before.

    All any of us can do is take the cancer journey one day and one step at a time and we don't know how our loved ones are going to feel day to day which is impossibly hard to cope with.

    I wish you all the very best and I am sorry I cannot be of more help.

    I will be thinking of you and wishing you well and I am sending love to you.

  • Hi Lou, thank you for your words and support. We are lucky he has lived a long and happy life my heart goes out to young people going through this horrible disease. I remember the shock and fear during the first few weeks, and its a constant rollercoaster of emotions. Its so hard being a carer seeing loved ones going through the treatment but in the last 9 months I have gone from never having heard of ALL to knowing an awful lot. It seems this is more often a young persons disease and the prognosis is very good as they are stronger and far more able to cope with the treatment than people over 60. I hope and pray your daughter copes really well and eventually makes a full recovery.

    If you havent found it yet the Blood Cancer UK site is very helpful and lots of people will give you support.