Morning,
My daughter, 25, was diagnosed with AML over xmas after a bout of heavy 'period' bleeding.
She's just completed her 10 day Induction Chemo, and is now fighting a high temperature (around 40C) and infection somewhere... as of yesterday.
She's in hospital though, on IV antibiotics (will know the best one today hopefully) , blood, platelets and fluids. Along with a myriad of other drugs.
Been in hospital since 26th Dec.
It's a worry, but hopefully the Anti's will kick in very soon.
She's not feeling the best.
Been on the usual GO, Cyta and Daun.
With a weird gene defect in the mix - skin biopsy has gone off for Full Genome testing..
Hi Gray97 and welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I keep an eye on our various Blood Cancer groups.
So sorry to hear about your daughters AML diagnosis and the journey so far. I don’t have Acute Myeloid Leukaemia (AML) but I was diagnosed way back in 1999 with a rare, incurable but treatable type of NHL reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the journey rather well.
Let’s look for group members to pick up on your post and get back to you. You can also click on the main ‘AML Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
It’s a challenging time for you so you may want to use the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
We also have our Ask an Expert section but do allow a few working days for a reply.
For good information do check out Leukaemia Care UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 08088 010 444
You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups most are online at the moment….. the one I attend does have a person with AML in it so worth checking.
Always around to help more or just to chat
Hi again.
The uncontrollable temperatures for no apparent reasons is frustrating but from my experience clinical teams ‘get there’ and get things back under control.
Be very carful as to scouring the internet….. a lot of information can be well out of date and often alarmist.
If I randomly Google my type of rare NHL it suggests that I should have died many years back. Stick to Leukaemia Care UK and their helpline.
Do also check to see if you have any Local Macmillan Support in your area.
As for the practical and emotional challenges of supporting your daughter and indeed yourself you may benefit from joining and posting in our General Family and Friends and Carers only support groups where you will connect with others navigating the exact same support challenges.
((hugs))
These early days can be very challenging but you can only trust in your daughter’s medical team to move this forward.
During my second d Stem Cell Transplant I landed in the Critical Care Unit a few times…. at the time it was scary but we realised that it was the best move as the main wards were not equipped or even staffed to give the care that was required.
Sending supportive ((hugs))
…..even when things look and feel impossible…… amazing things can happen ((hugs))
Update.. again
After some strong drugs, She got out of ICU last week and has been recuperating in her room in haematology.
On Monday, Her levels were rising so well, the doctor today said she's allowed home for a bit;
Neutrophiles rose from 0.4 to 0.9 overnight, but the platelets were the biggest jump and back to normal now.
Haemoglobin is lagging behind but it's apparently the last to catch up...
She had some ‘street clothes’ on for the first time this year ! (Been in hospital since 26th December).
It’s then back in for the bone marrow biopsy at the end of the week or next week sometime...
Still more Chemo to come in the near future though, once they know how many Leukemia cells are left after the biopsy results. .
She’s still managing to hold onto some hair though.. for now. (She’s looking more like me each day 
)
Oh this is great news, let’s look for the positives to keep coming ((hugs))
