Personally, I think a memory book is a beautiful idea and something for you all to treasure. There's so much children want to know, maybe not necessarily now but as they grow older. I wish my Mum had told me more about her life throughout the years before Alzheimer's took away her memory – (yes, a different situation I know but the same sort of…[Read more]

Yes, I did have the bad twitches and did and still do have the vivid dreams. I feel the patches (Fentanyl) plus the oral morphine exacerbated these and made my slightly psychotic. I'm not on the patches now but still have the vivid dreams which are, as you say, exhausting. I've always had bad nightmares but the cocktail of drugs we have to take…[Read more]

I've been on oxycodene for a few months now and am getting on fine with it – no adverse side effects that I can detect so far.

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Sorry you've had such bad news! Nothing useful to say 'cept hang on in there.

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Thanks for asking Jo – I've been totally zapped by meds this last few months. PP is rising and consultant has increased strength of my Revlimid and added in more Dex (I was on one pulse now on two and she wants me to make that 3) but now instead of having half the month when I'm okay-ish I only get a few days when I'm awake and lively enough to…[Read more]

😎 Great news!

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Great that the scan has cleared you and hope it settles – it's all a complete mystery why symptoms come and go for no apparant reason! It's hard to know when your 'good' days will be and it's natural to take full advantage when you get one but you always seem to have to pay a price for them.

Gaye, I'm so sorry to see that your RT didn't work.…[Read more]

It's quite understandable that you're worried about your Rev 'holiday' and the unexplained pains. I hope it gets sorted soon.

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What sad news to read. I wish you and your family strength at this difficult time.

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I am saddened to read this – he was such a big part of the group. I wish you and your family strength at this most difficult time.

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Great news!

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Yes, it's like when you buy a new car, everyone else seems to have the same make/model/colour LOL!

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LOL, yes the automatic LOVE followed by a string of x's does seem to happen with e-mails – never mind, I'm sure your consultant appreciated it!

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As said above, you're in a good place for info and guidance. It is a big shock to start with and we all ask 'how long' but it does vary (I'm 9 years since diagnosis at age 53 myself) but when I looked for information (before I found this site) it looked very gloomy and I thought I'd be lucky to get 18 months.

So, take each day as it comes and…[Read more]

Gaye, I know what you mean about avoiding the pain relief because you don't want to be stones out of your brain but if you start off with a low dose and see how that goes, you do soon get used to it and it WILL help until such time as your RT becomes effective.

What, if any, pain relief have you tried so far?

I'm on Oxycontin, 10mgs, twice…[Read more]

Thanks Gaye – I'll check that out.

Yes Nigel, you should be interested. It's a further development after the Lenalidomide (Revlimid) but not yet available in the UK. This, along with another drug, Bendamustine, are 'in the pipeline' altho' my consultant says that, for me, the Pomolidomide holds most promise now that my Revlimid is losing it's…[Read more]

The overall tenderness does lessen but I found it was worse on the days when I had the Dex/Revlimid combo so I blamed the Dex (well I would, wouldn't I?)

I had a very itchy scalp too but didn't have a rash as such. I took an antihistamine which settled the itchiness and now I don't get that any more so don't need more antihistamines so I guess…[Read more]

I would definitely say he should be on pain medication. The pain IS severe and as the treatment goes on should lessen, especially if he is put on a Zometa or similar drug (an intra venous infusion for the bones). If you have any worries whatsoever, don't wait for your next appointment, ring them as explain the problems.

Good luck.

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