Hi, my mom who is 71 next month was diagnosed with Acute myeloid leukaemia (AML) 4 and 1/2 weeks ago. It has been a crazy rollercoaster ride so far and she has just started having injections into her stomach and a tablet because the doctors said the intensive treatment would be too much for her. Looking for advice, people to chat to, to help us understand this a bit more. It still hasn’t sunk in yet. She had 2 days of intensive chemo before they stopped and it has taken 2 weeks to now start the injections. Today a doctor told her that she reacting badly to the injections and they may stop them and not give her any more treatment yet she is actually feeling better in herself than she has in the last month. We are so confused why they would say this and they have made her feel like giving up when she is fighting so hard. I am supporting her as well as my own family and a full time job that I do 7 seven days a week. We are both exhausted and so confused by it all especially when the doctors are so not positive towards her and they got her really upset today when she was alone in the hospital before I got there. I guess I am just after some advice from people who have gobe through this or are going through it.
Hi @Amanda33 personally you might both be still in shock so I am so glad that you have found our supportive forum, a great big welcome.
My thoughts and emotions were up and down for a very long time.
What you will find is that we are all very unique individuals with our own medical histories and that we all react to treatment regimes differently.
I find I need to be pleasantly assertive at medical appointments and that I have to write down all my fears, questions and practicalities beforehand.
No question is a silly question, I sometimes find that I have to ask for responses and a language I can understand.
You must be pulled in all directions at the moment and both of you must be absolutely exhausted. I found that the emotional side and medical appointments can be exhausting.
Personally I would say the best thing you can both do is to really look after and be very kind to yourselves.
The Blood Cancer UK support line is also there for you both on 0808 2080 888.
Please do keep posting how you are both doing
.
Dear @Amanda33,
Welcome to our forum, I have no doubt you will find this a really welcoming and supportive place.
I am sure you will get some great support from members of our community with lived experience but I wanted to reach out. I wanted to let you know we are very much here if you wanted to talk things through, @Erica has popped our number on the post for you so do ring if you ever need to chat, we would be happy to support you.
It sounds like you are all getting very mixed messages about what is happening, does your Mum have a Clinical Nurse Specialist (CNS) you can call? I would encourage you to reach out and just confirm what they meant by ‘reacting badly’. These types of comments really do need explanation so everyone can clearly understand the current situation.
It is no wonder you are exhausted, please do make sure you are looking after yourself also, there are some helpful hints and tips for this here - Looking after yourself when someone you love has blood cancer | Blood Cancer UK
We are very much here for you,
Heidi J (Support Services Nurse)
Erica & Heidi, thank you so much for the lovely words of support. I actually went to see the macmillan team when I went to the hospital to visit my mom today and they are popping in to see us both at midday tomorrow. I think reaching out meant that I was actually admitting that this was really happening but I feel a bit better for doing so and not so alone now. My mom restarted her chemo injections this afternoon so praying that she can continue with them without any bad reactions. Thank you so much
Please do let us know how the meeting with Macmillan goes and you and your mum are.
Asking for help definitely is a strength.
Be kind to yourself @Amanda33
Just popping by to say hello. My husband was diagnosed almost 18 months ago with Acute myeloid leukaemia (AML), albeit in his early 30s.
I’m so pleased that you have found the forum, and that you are managing to talk to people to get support.
I don’t have an answer for you - it’s a tough journey, and I think the main thing is to keep talking and allowing your emotions out rather than holding them in.
If I can support at all, please do let me know. My husband did also have two rounds of the venetoclax / aza regime. He found the injections into the stomach to be incredibly painful. His nurses recommended evening primrose oil capsules - break them open and rub the oil into the bruising to help reduce swelling etc. they did help xx