AML is now in my husband's Central Nervous System

Sorry I haven't been on in a while. My husband was diagnosed last October with AML and after lots of chemo treatment and radiotherapy and stem cell transplant treatment in March, we got the news in June that he was in remission showing 100% donor cells. But at this time he started to deteriorate in his mobility, he collapsed and was getting herendous pains in his right leg. After a few hospital visits and appointments telling his consultants this both at the Paget and Addenbrooks who thought it was Sciatica. He collapsed again in September and I knew something wasn't right. So we took him back to hospital saying this isn't right and after MRI scan and lumber puncture we were told his AML was now in his Central Nervous System. He got admitted straight away and under went more chemotherapy treatment. On Thursday at clinic, we were told as its in his CNS there's no cure! The chemo he had has cleared the cluster of cells that were in his lower spine but we were told there is a very strong possibility the clusters will form again and apart from spinal chemo that's all they can do. They said he can't work again and his mobility may never return back to normal. He now walks with a frame very short distances.

We asked what his life expentancy is and they couldn't say. Is anyone else experienced this or going through this?

We've been told its very rare. 

  • Hi , I am sorry to read your update. This turn of events is very cruel after the treatment and result he had.

    In my time helping out across the community I have no recollection of anyone in the AML group talking about CNS AML but let’s see if anyone is looking in who have not posted before can help.

    CNS Non Hodgkin’s Lymphoma happens from time to time and those I have talked with on here and on another Lymphoma support platform are normally treated with strong chemo and an Allo (donor) Stem Cell Transplant.

    But there is significant differences between AML and NHL so I don’t have the knowledge to help you further.

    This is a difficult time for you and your family, it may help you if you connected in with others supporting family through these specific health challenges so you may want to consider joining our Carers only and Supporting someone with incurable cancer groups where you will connect with others supporting family and friends

    It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, practical information, emotional support, benefit and financial guidance or just a listening ear.

    Sending you supportive ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Hello Little C, I wish I had read this post 5 months ago and replied to you. This happened to my mum and she didn’t have a chance to have a transplant. The doctors gave her 2 weeks to live back in May 2021 when an MRI showed progression of her AML in her spine and brain. My mum however is still alive!! She was only offered palliative radiotherapy back in May which she had and then No treatment whatsover after that! Just a blood test every month and an apointment with The doctor. We however, started her on alternative treatments at home as soon as we learned about her prognosis. I have done a lot od research myself and the doctors didn’t really think that these treatments would help her but they did. My mum is currently in remission from AML and her lesion in her brain is very very small and the doctors think it could just be scar tissue. They are keeping an eye on it with repeat MRI scans. I really hope that your husband is well and you are as well. Sending you big hugs!

  • Dear Jenny3697,

    This is so so hard to write, but my husband, my soulmate passed away on 5th December. We were told on 4th November that the clusters had returned and there was lots of them to the point where there was no further treatment available. His consultant had contacted every hospital for advise and to see if there was any trials anything that would help but they all said no. 

    My amazing husband bless him asked to go home as he had been admitted the night before as was running a high temp and continuously vomiting. 

    Me and our 2 daughters looked after him with the help of Pallative care for 4 weeks. It was at the time the hardest 4 weeks we all went through. But we were honoured that all he wanted was to be home with us. He was only 49 years old and the most kindest loving soul.

    I still can't accept that he's gone and we are in this huge dark hole right at the very bottom. Grief is hurrendous. Some days I don't want to carry on but have to find that inner strength for our girls.

    I get so angry that if Addenbrooks had done tests in August when he went there with his leg pain instead of just saying it was Sciatica it could have been picked up sooner.

    I'm sorry I can't write no more right now. But I am pleased that your Mum is doing well. Treasure every day with her.

  • Dear  I am so so sorry to hear about the passing of your husband, my most sincere condolences to you and your family.

    You may find it helpful to talk with others who are navigating this unwanted journey. We do have a group for Bereaved spouses and partners where you can do this in a safe and anonymous way.

    Sending you supportive ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Thank you Mike.

    I'll have a look into the group as I am really struggling.

  • My heart goes out to you…. 

    The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provides emotional support, benefits/financial guidance or just a listening ear.

    Talking to people face to face when on a cancer journey (patient or family) can be very helpful but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up.

    Do also check out for a local Maggie's Centre in your area as these folks are amazing and provide support for all the family after the lose of a family members.

    ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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