mum has breast cancer - steroid side effects questions

[RumerGodden]

mum diagnosed with stage 2 breast cancer earlier in the year.
She's had a lumpectomy and some chemo.
swapped chemo regime to taxol and herceptin, was already fairly unwell, but went downhill fast, coughing, breathless etc.
Oncologist did a chest scan, put her on antibiotics.
ended in up ICU, not clear what it was, either reaction to taxol or alleregic broncho-pulmonary aspergillosis (basically a mould allergy).
responded well to steroids but she is very weak and out of condition.

She's now home, chemo cancelled. she will be on steroids for next 4 months - prednisone.

she;s previously had dexamethasone with the chemo. Both steroids have stopped her sleeping and given her constant need to pee - she's resorted to a night nappy but still has to change it in the night - so 6-8 times urinating at night.

I'm worried that the sleeplessness and constant weeing is really taking its toll and will hinder her recovery as she is constantly exhausted.

I know steroids can make it difficult to sleep and cause fluid retention but this seems extreme.

I read a letter in her medical file at hospital from oncologist who basically dismissed her symptoms as anxiety and depression ( she also diagnosed suspected pneumonia from the chest scan but didn't tell us or suggest we go to hospital!).

I want her to change oncologists to someone who will take her symptoms seriously, as I feel that she has been having a rough time and all together, it might indicate something else going on (she also has persistently very low sodium levels since starting chemo, which again has been fobbed off as low priority despite this sometimes having serious side effects.)

I guess I am looking for some experiences from those of you who have had steroids (especially while being treated for cancer) and whether the wakefulness and constant weeing is par for the course or worse than usual.

Sorry for the lengthy post, hope someone out there can share their experiences.

I took dexamethasone during chemo, fluid retention and insomnia/ erratic sleep patterns were the norm but I only took them for 4 days each cycle.

My mum has been on dexamethasone every day since April with stg 4 breast cancer which has spread to her lungs, bones etc. She has major fluid retention but does manage to sleep fairly well and doesn't have to pee all night.

Totally see your point that her side effects are exhausting and won't help matters.

Can you ask them to change the steroid and see if that helps at all. My only experience with prednisolone was my daughter when she had a chest infection and she didn't have the same issues at all.

Please talk to the oncologist and get your mum copied on all letters so you know exactly whats going on. Don't be fobbed off, keep asking questions. And speak to the chemo / specialist nurses.

My mum had a horrible week on steroids after chemo but was just a a week each time. Hope you can help her to find a better treatment.

I wouldn’t take dexamethazone again unless it was a life or death situation. I had to take a sleeping tablet every night, I ate like someone possessed, got Cushing’s syndrome and it STILL didn’t control my chemo nausea. I had to take ages to taper down off them and I became a very angry, irritable and sometimes cruel person on them. Best wishes to your mum.

You may find going back to her GP may help. I had trouble with sleeping too during chemo this summer and found my Gp very supportive. I relied on sleeping tablets for the effects of the steroids but as I was only on them for a few days each cycle the problem did not last.