He seems to have a positive approach and if/when the effects kick in then hopefully he will rest up and listen to his body.

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LOL, there's a sort of irony in being relieved to be told that we are 'just' old and creaky and finding that reassuring!

Glad it was nothing more complicated.

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Well, licensed or not, in the circumstances, could your consultant not authorise sc injections? There are lots of drugs that are given on a 'named patient' basis because they aren't licensed, surely the method of administration should be the same? Worth an ask?

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I think asking for an x-ray is not unreasonable and should help your consultant decide what's going on. As said above, the pain should be kept under control wherever possible and so do discuss this too.

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Great progress, well done! Keep up the good work.

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Gosh, no wonder you're confused and I can relate to the 'bad news' on some of the sites. You're best to stick with sites like this one with up to date and accurate information. I'm 9 years post diagnosis and I know some on here have been patients longer than that.

It is a very frightening thing at the start but you will get in the swing of…[Read more]

Have a great time – you deserve it! Well done both.

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With regard to holiday insurance, there's a list on this site of companies which will give you a quote for people who suffer from illness and more particularly, myeloma. You need to ring round as the prices vary wildly, also, I seem to have seen other posts regarding people who had good quotes from different companies so yes, you can get…[Read more]

Weird this query 'coz I thought I'd replied to it (but must be something similar) about genetic links.

Firstly, I don't know the answer but I was told that it wasn't linked.

Secondly, I was, last year asked to take part in a large study which is now being carried out asking about my and my family's medical history and a sample was taken (I…[Read more]

Thanks Jo,

I'm still hangin' on in here, altho' I do admit on my really bad days I do feel a bit worn out with it all but then, who doesn't at some point?

I'm hoping to keep plodding on for a while yet!

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Yeah, it's a bit 'clumpy' I think is the best description the old one seemed a bit more user friendly.

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Sounds like a rough journey!

Glad you're back.

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Bin there, done that – I know JUST what you mean about the tenderness – if defies description – you do really feel as if someone's given you a good old kicking and every part of soft tissue is tender (as you say, even the hair roots).

Below is a copy of my reply in another section here which I've just typed.

[i]"I'm on Revlimid and Dex and…[Read more]

I;ve experienced the salty taste too (I'm on Rev/Dex). It seems to have gone away (for now) – I don't know why it came or why it went!

My taste buds are totally off altogether and most of my food is tasteless or doesn't taste as it should.

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I'm on Revlimid and Dex and have been for some time. However, things aren't on hold as well just now.

My problem is mainly the steroids. When I take them, they wipe me out completely and I have 7-10 days where I'm totally useless (ok, some would say that's a normal condition for me!) I feel faint, lethargic, 'down' am vomiting and just can't…[Read more]

I think it's going to be a total shambles and dread to think of the zillions of pounds which will be wasted in paying out shares and things and not treating patients. I'm dreading it.

Welcome. You'll find this a wonderful resource of up to date, accurate and helpful information and also a very supportive discussion group.

Good luck with your treatment.

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My heart goes out to you on reading this! It makes me SO angry when I hear of consultants like this – it's SO unnecessary. If you aren't in a position to change hospitals then have you thought of trying your Patient Liaison Services – I believe all hospitals have one, they may be able to help you address this problem.

Meantime, good luck with…[Read more]

Welcome. I trust you will soon be 'in the swing' and getting your treatmnet started ok. It's good that you got a diagnosis when you did.

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