[suenevParticipant]

Have recently been randomised to CRD as part of the Myeloma XI trial and due to pick up meds next Tuesday.

The hospital have told me that the hardest part will be coping with the rollercoaster side effects of dexamethasone.  Does anyone have any useful tips that might help with this?

[annlynnParticipant]

morning love. welcome … The rollercoaster is the best way to describe the journey. the best advice i can give you is go with it !!!on your tired days rest on your wide awake nights have something to do my son would come home on a sat night after being out with friends sometimes one in the morning and id be making a bannana loaf or a tea loaf. haha. put it this way the cake tin was always full !! my husband would get up for work to a living room ccompletly rearanged. and as wife crawling in to her bed shatered. just dont fight it there is no point if your not feeling energetic then get up watch a film xx. the other side is the emotions. i would want to shop and be high as a kite DANGEROUS. THEN DEPTH OF DESPARE. Weepy and. sad. but youl get through it. good luck. come on the sight. for support any time day or night ussually someone up. xx. ann quinnn

[avrilro55Participant]

On the other side of the coin it might not be too bad as we all react differently. I used to take mine at about 6:30 in the morning- yes i was more tired than usual, but it did not keep me awake at night…..i did have slight mood swings but nothing major, just a bit bitchy when i shouldn’t be and my poor husband couldn’t do anything right!!! It wasn’t too bad. Good luck

[suenevParticipant]

Thanks ladies!  Guess I will just have to suck it and see!!

Some of the advice I have read says to take it early in the morning – which makes sense.

At least I might catch up on the chores on the wide awake days and with my son’s wedding coming up in April I have a good excuse to go shopping!  No outfit yet as I didn’t know what stage/treatment I would be on or what size to get!

Was diagnosed in October but various complications have meant that I am now about to start treatment.  Have timed the start so the wedding falls during my week off meds.

[rebeccaRParticipant]

Hi, I echo what has been said – the first cycle is way the worst and then you/your body gets used to it a bit more. I would write a diary of your cycle so you can plan around what suits you and your reactions. I totally agree to go with the energy and clean the oven, bottom cupboards into the wee hours – there is a strange satisfaction to getting round to all the jobs you always mean to! I was quite high and would have 3 conversations at once and not listen to the response before my mouth ran off again (and quite loud) – funny the first cycle – but I then tried to limit social activities on that one evening. When a bit down I always had treats planned to brighten my day – little personal treats go a long way – not expensive just some good quality time doing whatever floats your boat – you’ve earned it. As cycles continued I found I was so tired at night due to continuing activities like exercise that I began to sleep as normal. I hated the bloating of my face (tho not my body) and my family used to have a good laugh at my expense on my dex as it visibly expanded – did go down a bit then but always bloated more on dex day. Good luck.

Rebecca

[finnParticipant]

Hi, I had real problems of sleeping on dex nights, and even the next night after that. Eventually I got so tired that I asked my doctor to prescribe some sleeping pills for the worst nights. They really helped me to get a good sleep. It was important for me as I was working throughout the treatment and I could not do my job being tired. During the down days I was not too tired but very irritable. That was very difficult to suppress. As Rebecca said, the first cycle is the worst, it will get easier when you know what to expect. Best of luck

[suenevParticipant]

Thanks everyone for the advice and shared experiences.  Sorry for the delay in replying but I have been away to see family before I start popping the pills!

Keeping a diary seems like a good idea and also going with the flow.  Guess once I get into the routine of it all it will make sense!

3 days to D(drugs)-Day!

Bring it on!!

 

Sue

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