Have you ever been neutropenic? What other... - Leukaemia CARE
Have you ever been neutropenic? What other information would have been helpful to you? Please answer our poll below and add further ideas
NicoleLeukaemiaCareAdministrator18 VotersPlease select all that apply:
Developed Neutropenic sepsis after cycle of chemo, very uncertain if I should contact the hospital when temperature was raised. It was lucky I did and spent 10 days on IV treatment.
I was neutropenic whilst having Chemo and some of the side effect are still apparent today some 18 months down the road. I developed oral and rectal ulcers, but my consultant didn't seem to know what they were. The whole experience of being diagnosed with CLL has been a learning curve for me and thanks to Google. I do feel however that someone in the Health care teem should be aware of any side effect etc and advise accordingly. My White cell although satisfactory is still slightly lower than it should be. Most of the information that I have gained is from the USA or Canadian sites.
I have AML and the chemo regimen for treating this has one in neutropenic state with each chemo session. I am admitted to hospital and nursed in isolation. Visitors are limited to close family and they must follow precautions wearing masks. My bloods are checked daily while I a, neutropenic. Sometimes they are so bad I need either platelets or whole blood transfusions. The length of the neutropenia is directly linked to the dosage of the chemo -the higher the dose the longer it takes to respond. Neupogen injections are given daily or twice daily until there is some improvement in the bloods. I have had complications surface during this time which I am still living with - clot in jugular of most concern,. abscesses which broke down into fistula and a variety of hospital acquired resistant bugs.
As an outpatient undergoing a treatment, being made aware of how fast infection can take hold when neutropenic and how little time you may have to react if you are on your own would have helped, I was admitted on several occasions with infections and suspected sepsis, it was not long after spotting initial temperature rises and feeling symptoms that everything escalated very quickly to a point I could barely function. So organising what was needed to depart quickly for hospital was a challenge.
What would have helped? strategies/suggestions to have made me prepare a encase I had to get to the ward quickly after calling. . From experience ensuring a strategy is in-place for pet care/child car at the drop of a hat is a must.
My treatment was as an inpatient (ALL). In all I was in isolation for almost 6 months. Often neutropenic.
Having my window open at one of the 3 hospitals I was at (whilst in isolation) may have allowed me to contract a nasty fungal lung infection. It's thought I may have caught another infection from normal tap water!
Best advice for me (and my young family) wash hands lots and very thoroughly! Get kids to change out of school clothes as soon as they get in from school. Avoid being with people with ANY bugs. Don't eat undercooked foods. Don't be in enclosed spaces with general public or in air con areas. Did you know freshly ground pepper is risky? No building work/decorating where you are. When areas of the house are cleaned don't forget door handles, light switches, tv remote controls, phones etc. Be very carefully around pets.
its not always been easy to do those things (and others), but I've remained generally well and haven't had to be readmitted since (also just about avoided becoming paranoid about cleanliness!😂).
