Hi. Mum (70) was diagnosed with acute myeloid leukemia 2 weeks before xmas '23. Massive shock as she was fit and well, very active. She was admitted to the beatson in glasgow for intensive chemo. She had 10 days of IV chemo, lots of blood and platelet transfusions. She developed a terrible rash all over which turned out to be an allergic reaction to one of her meds. It eventually cleared after they withdrew the tablet causing it. She had really bad tummy issues related to the meds as well. About week 4/5 she spiked a fever of 40 degrees. No apparent reason, all tests and cultures came back negative. Then she was moved into a single room for infection control. They did an extended blood panel which came back with corona virus, not covid but the common cold. No symptoms. We got her home for a break after 5 weeks and 5 days on the ward.
We are back on Monday to clinic to see consultant, get her bloods done and her hickman line in. We will be getting the results of her bone marrow tests done the day before she was discharged. Is there anything i should be asking the doc about? I am expecting him to admit her again at one point next week and have prepped her for this, she isn’t happy at the thought of it but knows it will need to be done to give her the best chance.
I wish i could do this treatment for her. I’ve seen her change so much over the course of her treatment so far. She has lost her vibrancy. She has chemo brain and struggles with little tasks.
Its like we are in limbo just now. Well me anyway. I’ve been off work sick since her diagnosis as i need to be the point person for the doctors as mum isn’t taking anything in.
Sorry for long post!
Hi @Scottish78, Firstly welcome to the forum and thank you for posting on here. Secondly your mums last few weeks is almost identical to my experience back in 2021, even including the rash! I’m sorry to read that your mum is poorly. In terms of questions to ask if I was you I’d write everything down. Examples could be - how many rounds of chemo, will she be in isolation again, length of time to wait for bone marrow results, any good ideas for food/drinks that are easily digestible, depending on bone marrow results next course of treatment. These may all sound like common sense but may help. It’s a long old process and the chemo brain isn’t the easiest to deal with, I just take each day now and rest when I feel I need to. Please keep us all posted and wishing you and mum all the very best
Hi @Scottish78 I am so glad that you have found us and posted. @Suenew1967 has given you at great response with their experiences.
It is so natural to wish that you could do the treatment for your mum when she is going through so much, that feeling of powerless is horrible, perhaps you just being there is enough for your mum.
I attach the Blood Cancer UK website details on Acute myeloid leukaemia (AML). Acute myeloid leukaemia (AML) - what is it, symptoms, treatment and prognosis | Blood Cancer UK
If you would like to talk to someone the Blood Cancer UK support line is there on 0808 2080 888.
As @Suenew1967 says the key is to write all your fears, questions and practicalities down and ensure they are all covered.
Always come on here when you feel the need to just write how it is for you both.
Look after and be very kind to yourselves and please do keep posting.
Hi @Scottish78,
I am so very sorry to hear of everything your family are going through right now. I’m pleased your mum has been able to get home for a wee spell and i hope she is doing okay? If you need to talk things through with us, please don’t hesitate to get in touch with our helpline- Blood cancer information and support by phone and email | Blood Cancer UK. We would be happy to support you all in any way we can.
I think you will definitely understand more of the near future plans at your mums next appointment and that may help with questions to ask. Monday sounds like it’s going to be a lot for your mum so I’m pleased you’re able to go along.
We understand how traumatic it can be to watch your mum go through so much from the side lines and know how important it is for you also to feel supported so again do know we are very much here for you.
Hi
I was diagnosed with Acute myeloid leukaemia (AML) in July 2021 and also treated at the Beatson.
I assumed everyone with Acute myeloid leukaemia (AML) would receive the same treatment, I was very wrong, it’s quite individual. Keep asking questions, I should have asked more! In hindsight I think they were protecting me too much from the reality of the situation, I wasn’t lied too but not always told the truth either.
I was admitted twice, five weeks each time then another 5 weeks in the QEUH for a stem cell transplant.
Good luck x
Hi. Update from today. We got mums bloods done before clinic. Seen the doc, good news! He said mum in remission! So his aim now is to do another 2 cycles of chemo, approx 5 weeks inpatient per cycle. She is being admitted on Thursday to start cycle 2.
He said if she was under 60 he would go for 4 cycles but as she is over 69 he is going to do 3 cycles and then see where we are.
Such a relief to hear this, I didn’t sleep a wink last night thinking about it. Mum not happy she needs to go back in, I think she had convinced herself that was her finished with treatment. I was expecting to take her in tomorrow to start her cycle so she has bonus days at home!
After clinic she got her hickman line in, that was pretty bad for her she has a really low pain threshold even the local anesthetic going in made her jump nearly off the bed. She was really shaky after getting her line in had to take her back to x ray and then the car in a wheelchair.
All in all it was a positive day I think with the news from the doc. Long may this last!
Hi @Scottish78 that sounds good news to me, but also a wearing, tough day for your mum, I expect she will exhausted.
If appropriate, I would say a celebration or treat is in order in her bonus days at home.
Be kind to yourselves.
Thank you everyone. It was a roller coaster of a day! The hospital phoned me this morning to say that they are a bit pushed for beds so she isn’t getting admitted until Tuesday next week. She is delighted but I’d rather we just got started.
On the bright side she will be home to see her new suite which is being delivered on Thursday!
Wow, yes, a rollercoaster of a day.
Yes, I bet she was pleased, but you would rather they got it started
Oh, a new suite how lovely and as you say your your mum will be there to see it delivered on Thursday.
Enjoy your next few days both of you.
Be kind to yurselves
