AML

Hi Amanda691 and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups. 

I don’t have AML but I was diagnosed back in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma Stage 4a so although my Blood Cancer ‘type’ is different I know this journey rather well.

It is all scary in the early days, I think it’s the unknown that is the main challenge but the more you get to know the journey and get into a rhythm the noise between your ears will turn die .

Do you know the name(s) of the treatments he is having?

Lets look for some of the group members to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.

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 cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

You may also find our Cancer Nurse Team in our Ask an Expert section helpful but do allow a few working days for a reply.

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.

Always around to help more or just to chat ((hugs))

Hi, all I know is he's having 3 different types of chemotherapy every day for 10 days. He's  now on day 5 and is very unwell... His oxygen levels have dropped and he's caught an infection and his temperature is 40.1. 

I am so worried about him, I can't think straight.

Sorry to hear he has infection, high temperature and low oxygen. Unfortunately this often happens during these treatments but his clinical team will keep on top of it.

Hi Amanda. My husband was diagnosed with AML a year ago. He's had different chemo to your husband, but also had a very rocky road with infections. After his first intensive course of chemo he had every side effect in the book, and was very ill with sepsis for around 6 weeks. Its a scary place to be but the chemo units know what they are doing, they have seen all the side effects that are so scary to us before, and got him through it. He was given 3 months originally, but now a year later he's feeling better than he has for a long time. He's on a different regime now, with chemo 7 days every month as an out patient. He has blood tests and transfusions in between, but life is a lot more settled now, as we're getting used to a new normal. If theres anything I can help you with or try to answer let me know any time. Hope he's feeling a bit better now. Look after yourself too. Its easy to worry about him and forget about yourself, but you are the one that will be looking after him when he comes home and going through the journey with him.