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 Little C, 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))
Dear Little C 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))
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))
