My husband had aml 5 years ago and following chemo was in remission- last year he relapsed with the FLT 3 mutation
The aml is also in his spinal fluid. in jan was given a few weeks to live but we have privately funded giltinerib (they refused funding ) it’s an inhibitor and whilst we don’t know for sure - it’s helping keep it suppressed.
How do other carers keep going day to day when faced with your loved one with this terrible disease. We try and remain positive But knowing the outcome is so awful some days it is so hard to keep spirits up ?
I have 2 young adult children living at home - a great support but it’s taking it’s toll on them too
feels like a waking nightmare
Hi and warm welcome to this corner of the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your husbands challenges.
I am Mike Thehighlander and I help out around our blood cancer groups, although I was diagnosed way back in 1999 with a rare type of NHL that is completely different from AML I do understand the emotional rollercoaster a blood cancer journey can be.
When it comes to the practical challenges of supporting someone in this situation you may benefit from talking with a wider group of others caring for family and friends so do check out our Family and friends and Carers only groups as you will connect with others supporting family and friends through their cancer journey.
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 can give lots of information, support, financial guidance or just a listening ear. We also have our Ask an Expert section, but do allow two working days for replies from our expert team.
((hugs))
