Forgot to add that these are the drugs for my treatment gemtuzumab, ozogamicin,daunorubicin and cytarabine. Has anyone else been treated with these, consultant said that the first one can have shaking side effects which I did have.
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That was quite a a first day and round @Caroline30.
Be very kind to yourself and please do keep posting
Hi everyone. Thank you for all the kindness and support. Diana your experience gives me hope so thank you. I struggle with the isolation most days, the loneliness and feeling so vulnerable. Every time I get a visit its good but I cry like a baby once they have left. The days and nights are much like groundhog day. Xx
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You can do this @Caroline30 , in fact, you are already doing it. Be kind to yourself.
It wasnât me that was diagnosed with Acute myeloid leukaemia (AML) but my husband and I cried on and off for weeks. Talking to doctors, crying, something on TV, crying. Even now, 6 months on, I can be very emotional about things that pre leukeamia wouldnât have bothered me. I canât offer any advice other than to embrace it and take it one day at a time.
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Hi @Caroline30 Coming to think of it since I was diagnosed 20 yrs ago I have been far more emotional.
Tears can come for no reason, or something sad on TV, a book etc.
But your groundhog day feelings must exacerbate it for you.
However you have have taken a really brave step of joining our forum and being so honest on here.
You are really now part of our forum family and never alone.
Also the Blood Cancer UK support line which is there for you on 0808 2080 888
I am sending you loads of virtual hugs to put in your pocket which are to be used when you need them.
Please do keep posting and telling us how you are.
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Such lovely advice from you @Erica. A fresh day for us all and I hope you manage to have few nice moments @Caroline30. Youâre doing a superb job. Thinking of you. Xx
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Hey @Caroline30
How are things going? Sorry to learn of your Acute myeloid leukaemia (AML) diagnosis and sending you lots of strength and positivity for your treatment. 
It is great that you have found this forum. There are some truly special people on here. You can ask questions, speak to the @BloodCancerUK-SupportTeam in the dark times.
My daughter was diagnosed with Acute myeloid leukaemia (AML) (at 20 years old) last year. Feel free to read my forum thread. Everyoneâs cancer journey is different but all experience a rollercoaster where things can change in a second.
Try not to worry about the stuff you canât control. Recognise that you are in a situation that is absolute pants (I would use a stronger word but donât want to get banned from the forum?!). Recognise any positives that come your way and remember, even through the darkest night, the sun will rise.
Do keep us updated. Sending you love and positivity.
Sarah xx
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Hi everyone. Day 9 of chemo, last day tomorrow.
Been neutrophic since day 6, and today I have really struggled with my headspace. Felt strange but not unwell, had platelets transfusion the obs check every 15 minutes got to me, it is 950pm and I have been on blood transfusion since 630pm. Got cytrabine to go yet after transfusion is finished and isolation on top it has just felt too much today.
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Oh @Caroline30 I really felt for you when I read your post.
Donât forget you are going through an awful lot emotionally, medically, psychologically and practically at the moment, it sounds very natural that to me that it should feel all too much and also so isolating.
Be ever so kind to yourself, keep posting and I am sending you loads of virtual hugs
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You super brave person
The chemo rounds are relentless huh. My daughter and I got sick of that âend of infusionâ alarm on the IV pump. We even made up a little song about it to try and make light of those hard times.
Whilst I have not been through treatment myself I have watched my beautiful daughter go through it. She slept when her body needed it, ate a little of what she fancied and we tried to laugh every day. Just to hold on to some positive thoughts is very important.
It is good that you have recognised that today is an awful day. Rest and be kind to yourself.
We are thinking of you and sending positive vibes xx
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Hi everyone. Chemo finished last night, even managed a little lie in this morning. Feeling strange and a little light headed and due platelets and blood transfusion today, my infection markers slightly raised so may have another antibiotic, I struggle taking so many tablets some are so big, and I have a slight pain in my right ear. Anyone else had this?
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Sorry just had a thought that it could be the temperature probe, goes in a bit deep sometimes.
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Glad that your chemo finished last night @Caroline30
How is the pain in your right ear now?
If it does not clear up naturally, perhaps contact your nurse, GP or medical team.
Please do keep posting how you are and be very kind to yourself
Hi everyone. Day two of no chemo, my consultant says Iam doing very well indeed so today is a good day, no chemo or bad cells left just need to make good ones which can take two weeks from now. Just wondering if this is the case or can it be sooner? Obviously continue with blood and platelets transfusion when needed for now and hopefully no infections, more worried about them when I leave hospital.
Iam sure they are members on here that are from Cornwall like me, if so have or are you receiving your treatment at The Royal Cornwall Hospital.
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@Erica the pain in my ear is easing, no redness or inflammation so I think it was just someone going in to deep with the temperature probe!
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Heya @Caroline30
Thanks for your updates. Good to hear chemo is done for now.
We are Cornish but my daughter had her treatment at Derriford (We live top end so about the same distance to both hospitals.). We know a young person who received treatment at Royal Cornwall and she was very impressed with care and the team.
Hope your ear is doing okay now? We had to wait a long time after first round for blood counts and neutrophils to rise but everyone is different. I was extremely nervous about Danae coming home (risk of infection) but the consultant said most infections come from within us - especially when immune system is compromised. We learnt how to lie low when Danae was allowed home. It was a bit like Covid all over again?!
So for now, rest up and be kind to yourself. Keep us updated when you can.
Sending love and positivity
Sarah xx
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My daughter had the same chemo mix (and the same reaction!). Scary when it happens the first time. Always buzz for nurse if you have any symptoms. We found it best to say something and keep the team aware of any changes
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Hello everyone. I spiked a temperature of 38 first thing this morning and the medical team were right on it. Blood cultures taken, chest xray and Iv antibiotics (TAZ) started four times a day. Not been informed of any results yet. Temperature has been up and down but not high liike this morning, my blood pressure is on the low side most of the time, and I have a headache that comes and goes, it is same side as my poorly ear where the temperature probe went in too deep. Anyone else had low BP and one sided headache?
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Morning @Caroline30
Sorry to hear that you have high temperature but good to hear nursing team are on it. It usually takes a while for blood culture results to come back. Some nasty stuff grows quick and other stuff can take a while.
The TAZ will be doing its thing. My daughterâs nursing team nicknamed it âDomestosâ! because of itâs ability to wipe everything out.
Take things easy. Rest when you can and try and keep your fluids up. My daughter never had the symptoms you describe but I guess everyone is different. Hopefully you will start to feel brighter real soon.
Thinking of you and sending positive vibes
Sarah
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Hi @Caroline30 so sorry to hear about your temperature spike, but really glad that your medical team was strsight on it.
Perhaps just keep your medical team of all your symptoms and poor ear.
Really look after yourself and be very kind to yourself and keep posting
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