[Pickle2024Participant]

Hi all,

Dad was taken off all his treatment last Tuesday as he was suffering terribly with side effects which we think were the steroids. He had a terrible cough, which luckily didn't turn out to be an infection and was getting weaker by the day. It's been a week now and we were hoping he would start to feel a bit better but he seems to be feeling worse than he was on the drugs. I'm assuming this is withdrawal symptoms and possibly a bit of depression?? He says he just feels yukky and can't explain it, he looks terrible and seems very depressed. Has anyone else had these feelings after finishing their treatment? He was on ctd for 6 months. We are finding it really distressing after all this time and just want to know when he will start to feel better :-(.

Nicola x

[KeithH17Participant]

Hello Nicola, as I said to you in a previous post I was feeling very similar to your Dad regarding side effects.
Try not to worry about it and you are right it is the steroids and a week is no time at all with withdrawal symptoms.
These like all things MM vary between patients and when your Dad's body adjusts to having the drugs stopped he will start to feel better and this I hope very soon. I also looked terrible like a Zombie and totally lifeless but battled through it until it started to improve albeit slowly. Dex can mask infection and only when you stop taking them do things like coughs and the rest rear their ugly heads. I had one myself which lasted for 3 weeks and made me feel very weak but petered out eventually. I had my routine blood test on Mon which showed that I'm Neutropenic with my other counts all low. I should be feeling tired and fatigued but I don't in yet when my counts were so called near normal I felt dreadful so how do you work that one out? I can't. How are your Dad's counts at the moment?
I'm back at the hospital next Mon for another bloot test to see if there is any change as I only just started my 5th cycle of Dex/Rev Tuesday. The Dex will knock me back but it's only for the first 4 days of the cycle so I should be feeling better by Mon/Tues next week and I hope your Dad is also feeling better by then.
Don't forget to keep in touch with the Consultant and continue to push for answers to your Dad's condition.

All the best.

Keith.

[Pickle2024Participant]

Hi Keith,

Thank you for your reply. I think we are all so eager to see dad looking and feeling better. His last blood results were fine, haemoglobin was 11.7, which they said was good and kidney function normal. I've been looking on the Internet about the withdrawal symptoms from the steroids and that seems to cause just as many problems as they do when your taking them!!! Dad is still so weak and tired, but I guess his body has had a lot to deal with lately. He hasn't been out for a few weeks due to his bad chest but we did manage to get him out for a few hours yesterday, just for a bit of fresh air and change of scenery as I think sitting around indoors too long can make him a bit depressed. He did enjoy it but was totally exhausted by the time we got home and had to sleep.

Thanks again Keith. I'm hoping dad will start to feel better soon and be able to join in on this forum. I think it would help him to talk to other people who know exactly how he's feeling and that he's not alone. We all sit there telling him the way he's feeling is "normal" but to hear it from other people may help. I've had a chat with the myeloma nurse on the info line who was really lovely and I've given her number to mum and dad and told them to speak to her too. I'm sure the emotional side to all this is just as powerful as the drugs and it definitely helps to talk about things.

Anyway, I hope your not feeling too bad on your next course of steroids, horrible things!!! I will read this post to dad and hope it reassures him a bit

Take care
Nicola xx

[KevinLParticipant]

Nicola

I found the DEX (steriods) to be the worst of the CTD treatment. Like your Dad it seemed to be when I stopped taking them I had the most trouble. I have just finished the CTD cycles and it took a week to to start to feel normal again. Depression and anxiety were horrid side effects but they did pass after a short while.

Hope your Dad is feeling better soon, I'm sure he will.

Kevin

[Pickle2024Participant]

Hi Kevin,

Dad has been off it all for just over a week now and today was the first day he had a bit if sparkle back in his eyes. He's far from back to normal but looking better than he did Tuesday! His blood pressure dropped and he felt really dizzy, so horrible to see after all he's been through. I've read about the side effects of withdrawal and no wonder he feels bad. I just hope each day he starts to get a bit stronger as he's still very weak and walking with a frame. Thank you for letting md know how u felt, it's always encouraging hearing it from someone whose been through the same thing. I read all these comments to dad just to let him know he's not alone with all these awful side effects. I hope he's string enough soon to be able to join in, I think it will help him.

Hope ur feeling better soon too. Take care

Nicola xx

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