After two recent rounds of intensive chemotherapy for Acute myeloid leukaemia (AML) (5-6 weeks in hospital each time) I am about to be admitted again for a ‘consolidation’ round of HIDAC (high dosage of Cytarabine, twice daily on days 1, 3 and 5… followed by several weeks stay, until my blood counts recover).
On my last stay, I was repeatedly moved between single and multi-occupancy rooms (e.g. four times in ten days) and spent half my time in a room where patients had respiratory infections.
The air conditioning in that room had failed before Christmas and was still not operational when I left the hospital four weeks later! The other patients had visitors all day, every day - some visitors refusing to wear face masks or even wash their hands.
The hospital has warned me to expect similar conditions during my next stay as it does not have enough single rooms to provide isolation for Acute myeloid leukaemia (AML) patients. Is this normal/acceptable during periods of severe (or absolute) neutropenia after intensive chemotherapy?
I am sorry to hear about the care you received during your last cycle of treatment for your Acute myeloid leukaemia (AML). It is understandable that you have concerns about being admitted for your consolidation treatment.
It is recommended that patients undergoing intensive chemotherapy treatment for blood cancer should be nursed in isolation facilities. As you are at extreme risk of infection due to prolonged neutropenia following your intensive chemotherapy, you should not be sharing a room where patients have respiratory infections and have lots of visitors.
In regards to isolation facilities, The NICE guidelines on Haematology Cancers, Improving Outcomes recommends
Isolation facilities
1.2.3
Inpatient isolation facilities for adults and young people who have haematological malignancies and are at risk of more than 7 days of neutropenia of 0.5×109/litre or lower should consist of a single‑occupancy room with its own bathroom. [new 2016]
1.2.4
Consider installing clean‑air systems into isolation facilities for adults and young people who have haematological malignancies and are at risk of more than 7 days of neutropenia of 0.5×109/litre or lower. [new 2016]
I would encourage you discuss your concerns with your haematology team or the units Matron, if there is one. If you would like to discuss this with us in more detail, please feel free to call our nursing support line on 08082080 888. Our opening times are in the link Blood cancer information and support by phone and email | Blood Cancer UK
Dear Fiona,
Thank you for your prompt and informative reply. I have already discussed my concerns with the hospital team including the Acute myeloid leukaemia (AML) consultant and the matron of the haematology ward.
They explained their difficulty with bed availability, and the consultant tried to reassure me that the risks of infection from others was negligible compared to that from one’s own mouth & gut ‘flora’. He has offered to refer me to a hospital of my choosing if I am still unhappy about the situation. Unfortunately, I do not know whether my expectations are unreasonable or how the facilities at other hospitals might compare. And would choosing of another hospital delay my treatment?
I would be interested to know the experience of other Acute myeloid leukaemia (AML) patients facing such decisions.
Thanks so much for posting @Tigger and welcome to our forum and sorry to hear what an anxious time you had in hospital. @Fiona_BloodCancerUK has answered your concerns.
I hope others will be able to share their experiences for you.
Look after yourself
Whilst it is good that the consultant has given you some reassure and options, I do not feel that your expectations are unreasonable. Going through treatment for Acute myeloid leukaemia (AML) is hard enough without having to make further decisions about where to receive the best care.
Haematology facilities unfortunately can vary depending on where you are based within the UK and also on bed availability. It is possible that choosing another hospital may delay your treatment but I would encourage you to discuss your concerns with your team.
I hope some of our lovely forum members will share their own experiences with you.
Unfortunately I had the same experiences whilst undergoing treatment for Acute myeloid leukaemia (AML) during 2023. Our ward was hit by a sickness bug which meant all patients were moved to an older ward whilst deep cleaning was underway. Bathroom facilities were constantly in need of repair as showers were not working and toilets out of action. Whilst neutropenic I was in a ward with five other patients who had visitors. The nursing staff were brilliant but the hospital lacked the number of single rooms needed for all neutropenic patients to be isolated.
Hi @Kazzawil a great big welcome to our forum.
Your experiences whilst undergoing treatment sounds as if they were very challenging for you…
How are you doing now?
I look forward to hearing more about you.
Really look after and be very kind to yourself
Hi Erica I am doing well thank you. I am in remission and gradually getting back to something which resembles normality. Still having bone marrow biopsies every three months until September. A little concerned as after this it appears that nothing will happen to monitor the situation. It is a bit like you are cast off and left to fend for yourself. Hopefully the picture will become clearer after a phone consultation with my consultant later in the year. I had the FLT3 mutation and the NPM1 mutation but did not need a stem cell transplant.