Hello,
My son diagnosed with Acute myeloid leukaemia (AML) C92.0 , and achieved remission in the first round of FLAG-IDA, but in the second round, he lost it and has a 10% blast count. We are now waiting to start a transplant directly, as the doctors say there is no other option.
Has anyone had a similar experience? What can you tell me or suggest as advice?
Hi there @tony9
Thanks for posting and I am sorry to hear the news about your son. There are posts about Acute myeloid leukaemia (AML) on this forum. I have one as my daughter was diagnosed with Acute myeloid leukaemia (AML) last April.
I have learnt that everyone’s cancer treatment and journey is different. You may want to jot down some questions to ask your son’s consultant/team. The @BloodCancerUK-SupportTeam on this forum are also a great source of advice and support. You can message them and book in a call with a member of their specialist team if you feel this would prove helpful?
Take each day (hour) as it comes and look after yourself in this.
Sarah
Hi @tony9.
It must be a very difficult time for you and your family. I can see @SarahMum has given you the information for the support line. They are so helpful and may be worth a call.
Im sure there are others who may be able to share their experiences but each journey is so different. Have the medical team been able to talk through everything with you?
I can only imagine all the questions you have. Please keep posting. People on the forum are a great support and we are here whenever you need us.
Hi Tony,
Welcome to the forum and I’m also so sorry also to hear about your son. I’m glad you felt able to reach out, and I’m sure more members of this supportive Online Community will be in touch.
As SarahMum has said, there are other posts about Acute myeloid leukaemia (AML) here. If you’d like to take a look, try clicking the Leukaemia tag on the forum homepage. It certainly can be useful to write some questions down before your next conversation with the hospital team. To help with this, we have this information on our website, which includes information about stem cell transplant: Acute myeloid leukaemia (AML) - what it is, symptoms, tests, treatment, prognosis and support. | Blood Cancer UK
As already mentioned, our support services are here for you too if you’d like to talk it through at all. You can call our Support Service Nurses for free on 0808 2080 888 . We’re open 10am to 7pm on Mondays; 10am to 4pm Tuesday to Friday, or email support@bloodcancer.org.uk
Take good care of yourself.
All best wishes,
Ali
Oh @tony9 Others have given you brilliant support and help.
It must be so difficult for you as a parent and I cannot imagine the thoughts, feelings and practicalities it has brought up for you.
Please try and look after yourself as well as you do your son and keep posting