[KWilsonParticipant]

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 effectiveness.

I'm not sure if there's any info on this site about either of them but if you search the info leaflets and info pages, you'll find anything that's currant on here; or, ring one of the nurses who will have the up to date information.

HTH

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[KWilsonParticipant]

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 you body gets used to it.

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[KWilsonParticipant]

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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[KWilsonParticipant]

Maybe the bleeding is caused by the results of constipation as the drugs do tend to 'bind' you and when you do manage to go to the loo, it can result in very hard stools which cause bleeding and as you say his platelet counts are low, the bleeding may be worse because of that.

Hope he gets back on track soon.

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[KWilsonParticipant]

I think it is a side effect but I also get spasmps in my hands when my calcium or potassium drop – what was your last blood test reading? Worth asking.

I also find if I take a painkiller which contains codeine it helps with the spasms.

HTH

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[KWilsonParticipant]

[quote] Perhaps someone should open a restaurant for people who are taste compromised?? Could call it Th e Cardboard Cafe? Sorry I am in a silly mood today Hang in there Keith it does get better and you will struggle to remember how rubbish you felt !!love Bridgetx [/quote]

lol totally agree, hard to explain to anyone who hasn't been there isn't it?

I can totally relate to the 'feeling rough' altho' I'm still on Revlimid/Dex I'm getting the same side effects. I long for a 'normal' day – no solutions to offer tho'!

Keep on keeping on.

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[KWilsonParticipant]

I had been wondering how you were. My friend lost her husband to prostate cancer and she too said she didn't have time to grieve because of all the 'stuff' she had to deal with after his death.

it is very difficult.

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[KWilsonParticipant]

Yup, my combo knocks me off my feet too – you just have to learn which are your 'good' days and work towards them, otherwise, she'll have to rest up and accept the inactivity, which isn't always easy I know.

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[KWilsonParticipant]

I find taking a pain killer that contains codeine (sp?) helps with the restless legs syndrome. You can buy them over the counter but it's better to get them prescribed with all your other 'stuff'!

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[KWilsonParticipant]

Gaye, it took about 12 weeks for my RT to fully relieve my back pain but the effect has been lasting so it's worth the wait, altho' I hope yours works a bit sooner than that.

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[KWilsonParticipant]

I had just the same problem with bras when I first developed MM. When I was x-rayed, it turned out that I had cracked ribs! Now, my rib cage has 're-set' and it more the shape of a bird cage then a set of ribs (good job I'm not a glamour model eh?)

I can also relate to the lost weight. I just cannot regain any of mine and I look like an anorexic – all my clothes are falling off – I look as if I've been in my granny's dressing up box. I have bought a couple of smaller sized things to wear when I leave the house but am loathe to replace my whole wardrobe!

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[KWilsonParticipant]

Welcome. Re questions, I can't help there but I'm sure they will forumulate as the days go by and there is a lot to take in intially so I advise having a wee note book or similar so you can write it down as you go along.

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[KWilsonParticipant]

Welcome.

I can understand your worries about him being able to take the medication as prescribed – it is a bit of a nightmare to start with.

Alternatively (or as well as the chart) as mentioned above, it may be worth considering asking to see the hospital social worker with a view to a carer calling once a day to supervise the tablets.

My Mum has carers (she has Alzheimer's) and they are not allowed to GIVE the tablets but they are allowed to (they call it) 'prompt' her to take them, so this may prove the solution in your Dad's case – it worth looking into.

Good luck.

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[KWilsonParticipant]

Welcome. You'll soon have learnt a whole new set of words – it's amazing how soon you become familiar with it all.

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[KWilsonParticipant]

Welcome. This is a good group for letting off steam or just 'talking' so feel free.

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