[KWilsonParticipant]

Even when in remission I'm paranoid about infections. I always carry the antibacterial gel in my bag and use it when out. However, I think careful hand washing and sensible avoidance of people with active infectiions (where possible) is advised but don't let it stop you enjoying your remission now it's here!

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[KWilsonParticipant]

What a lovely tribute to Michael and you and your family. You must be SO proud.

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[KWilsonParticipant]

Ah, the MM Merrygoround again! Good luck, hope it's soon battered into submission again.

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[KWilsonParticipant]

Sorry to hear that you're pain has returned – it's a pain all its own and defies description. It's really a downer when you and the others here find they are relapsed.

I'm relapsed myself and on lenalidomide which is now not working as well as it did so to see that Pomolidomide is 'getting thru' (albeit still with a begging mat) is reassuring. My consultant went to the big meeting in America and seems to have faith in this drug as a next line for me when the time comes (if I can get it that is).

Good luck and I'm following this with interest – thanks for keeping us updated.

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[KWilsonParticipant]

Yup, I did the test and questionnaire last year – it was a bit of a puzzle trying to get names and offspring of my aunties and uncles but I got there in the end. Wonder if I'll still be here when the results are reported?

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[KWilsonParticipant]

Oh, I've got LOTS of wine and cider fermenting!

Good luck!

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[KWilsonParticipant]

The infusions are brill, not only do they help the bones but (for me anyway) they helped with the pain and I believed they lengthened my remission and it seems this has been conirmed subsequently so it's a good thing.

I had sort of 'off' days after the first few infusions but after that, no side effects at all.

Tell her to take a book to read, it takes a while to go thru'.

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[KWilsonParticipant]

The pain never goes away but you do learn to live with it.

Many many thoughts are with you at this most difficult time.

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[KWilsonParticipant]

Have you tried any of the anti inflammatories (Ibuprofen or suchlike)? They might help.

If/when you get the RT it will help to get rid of the pain, altho' it's not instant (well, it wasn't with me anyway) but it's stayed away for years.

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[KWilsonParticipant]

Very difficult to predict things with this strange disease. I was sent home to die 9 years ago! Fortunately, I pulled through and altho' I've had ups and downs I've had more of the ups.

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[KWilsonParticipant]

When I took the Piriton, I took it without thinking of the interactions but when I told my consultant she was quite happy about it and said I'd done the right thing so even if it doesn't get rid of the itching completely, I'm sure it will reduce it without any problems.

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[KWilsonParticipant]

Hope things progress well on the treatment journey.

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[KWilsonParticipant]

I agree the confusion could be linked to the calcium, it's well know.

Might be a good idea to ring one of the nurse on here now that they are saying the Lenalidomide is not successful. There are other treatments coming on line, altho you may need the help of Myeloma UK to get access to them. It's worth a try.

Good luck.

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[KWilsonParticipant]

Well you're in a good place here. Lots of support and humour. Up to date and information you can trust on the leaflets and advice and the nurses on here are brill too.

Good luck on your journey.

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[KWilsonParticipant]

I felt as if I'd got nits for about 6 days. I took some Piriton, which seemed to help. The itching did wear off and hasn't returned.

Good luck.

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[Author]

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