Hello lemons101,

Welcome to Cancer Chat! I hope that you will meet others here who have been through this before and have looked after a loved one with terminal cancer so that they can share with you what to expect after your mum comes off steroids for the last time. As you rightly point out, people can obviously react differently but it always helps to hear from someone who has gone through a similar experience before.

I thought I would link you to this thread by [@Pebbles67]‍ and I hope [@Pebbles67]‍  will be along to share her own experience looking after her husband who has advanced cancer and is currently still on steroids as she was after a few tips on what to expect from the steroids. Even though you are not exactly in the same situatio as  I don't think her husband is yet coming off the steroids, I thought you two would have a lot to say to each other!

Should you also want to talk things through with our nurses, you are welcome to give them a call on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm.

Best wishes,

Lucie, Cancer Chat Moderator

Hi lemons

I really feel for you and cannot offer any advice as I am currently experiencing the end of a steroid high with my husband on the same drugs.

All i know is that last time he came off them too quickly he hit a really bad low with alot of pain and refusal to eat or drink.  Subsequently he was put back on 4mg dose and has been full of energy and eating for the last 3 weeks.

However we now have to reduce the dose 1mg a week -I am not sure if this is the last time but already fatigue levels are rising and he is experiencing cramps in his leg. He has lung, kidney and liver spread and was told thevpain last time was due to the liver inflammation. Apparently steroids help to reduce it.

This time we have a good stock of oramorph to help with the pain and am going day to day.

I am sorry this may be of no help to your mum -but send a huge hug to you both. Stay strong -cause thats all you can do! 

Xxx

Hi lemons

How are you holding up?

My husband had now finally come off steroids and had an almost immediate loss of taste and appetite.  He was admitted to a hospice last friday for a drug overhaul but will not be coming home. As he is getting confused they think ot may have spread to his brain.

The only guidance i have been given regardiing prognosis is that they work off the speed of symptom progression once all other areas have been assessed. In his case a water infection and drug overhaul for pain,etc. If they developed slowly over a month-it's a few months, etc.  In his case as he has rapidly deteriorated since steroid treatment stopped its either 'short weeks' or days.

Its the hardest thing ever being unable to do anything other then to be there for them. The best is to make sure there is no pain and to be so strong and focused on just being there when you are able.

Best wishes and love

Hi pebbles, 

i am sending lots of positive love your way,  I cannot express how much I appreciate your thoughtful comments on my post. 

I hope everything your way is as okay as it can be and that you are, like myself, trying to make the best of a bloody awful situation. 

My mum is now deteriorating at home, she is on 2mg dose of steroids and the steroid high has appeared to stop. Like your own situation, she is fully stocked up on Oramorph which she takes the max amount she can possibly have. As well as 60mg Zomorph (the morphine tablets) every day. 

Again, I hope your husband’s pain is being kept to an absolute minimum. I wish there was a magic potion to fix your husband and my mother. Wouldn’t that be amazing...

lots of love x

Hi my wife as secondary breast cancer in the lungs and brain and after radiation on her brain she was put on Dexamethasone so get the swelling and side effects from that (incontinance, in a daze and not knowing what is happening or where she is) down. Every time she comes off it she as different side effects, from being out of it for two days, to  just in a lot of pain.  Basicaly its been left to me to to rejuce the ammouts she on, and each time shes ill again we are toled to go on a higher dose. Then I have to try and slowely bring it back down. (she is on 0.5 mg every other day now).  We have both said if we could she would just stay on a low dose of them as they work but on the down side she as put 6 stone on since taking them with swollen legs and face, and the extra weight puts so much strain on her  back and leg  pain all the time so i don't have any answers but be carfull they do a job but wish my wife had never had to have them at all.

I realise this is an old post and sorry to jump in, but this is my exact question, how long did things take from stopping dexamethasone if you don’t mind me asking xxf

Hi TillyJ, did you ever hear anything back from this post? I’m wondering the same thing as they have just put my dad back on steroids today, last time they reduced them slowly until he wasn’t taking them anymore he’s ended up proper ill and now I’m hospital for the last week, but they have just started giving him them today again. Any sort of answers or advice would be appreciated.

Lynzi x

Hi,

Im not sure what your dads taking them for my mum had met brain from lung cancer, diagnosed January this year and died June 9th this year. She was on a huge dose to stop swelling in her brain, is it the same for your dad? I wrote my question 26 may and like I said she died a couple of weeks after that post. I’m so sorry your dads fighting this fight. Just love him as much as you can... I would give anything ️ ️ ️ Sending my love and thought xxxxx

Ask anything you need, if I can help I will xxx

Dexamethasone reduces swelling to the brain.