[FrancesParticipant]

Dusk – my reply to your post came out sounding crosser than I meant it to. I wasn’t trying to denigrate your experiences of treatment – which have obviously been poor, just to say that mine, so far, have been nothing but good. And that I feel that the only way to put up with this nasty condition is to look on whatever positive side you can find. I hope you have a better time to come

[FrancesParticipant]

What are these drugs we are being denied? Who are the doctors who are just ‘making careers’ out of treating myeloma? Certainly I’ve had nothing but care and attention from my doctors since I was diagnosed. I was assured from the start that there’d be no ‘post-code lottery’ in my treatment. As Helen says, all new drugs must be tested or they will do more harm than good. Please, myeloma is scary enough without looking for other things to be scared of. Suggesting that we are just taking what is being given us ‘without question’ is unkind – it’s very clear that the people who use this forum aren’t fools.

[FrancesParticipant]

I haven’t posted very often, but I’ve found this forum extremely helpful – thank you everyone. I intend to have a bloody good Christmas, and I hope you all do too.

[FrancesParticipant]

My smouldering mm has just started fizzing away so it looks like chemo in the new year for me. I’ve been told I’m too old for SCT – I am just 70, and until this thing hit me was in very good shape. Have others been told this? Is there any point in arguing with my haematologist’s decision? I know the nice long remissions result from STCs.
Good to hear about you, Nick, and good to read your treatment blog, which I shall study with great interest when the nasty stuff starts happening to me.

[FrancesParticipant]

I'm still only 'smouldering' so haven't had treatment yet. But we've so far been very happy with the care offered at Hereford hospital. There's a new purpose built and attractive unit, and the two haematologists I've seen, Dr Robinson and Dr Willoughby have been excellent – intelligent, nice and give you proper answers to questions and plenty of time to ask them. dr Willoughby assures me there'll be no 'post-code lottery' when I need treatment.

[FrancesParticipant]

Yes, me, a few weeks ago. Have had MGUS for years but it's just progressed this year. I feel tireder than normal but so far am getting on with life. (I posted last week about dealing with aches and pains and wondering how to tell if they're significant or not)

[FrancesParticipant]

Thank you again for replies. Yes, I had a full x-ray which was okay. For the last few months my tests have been stable, though I'm still feeling tireder than I like. And getting little aches and pains which usually seem to go away; but I hate having to pay them so much attention! Are they? Aren't they? I shall just have to get used to being a hypochondriac.

[FrancesParticipant]

Thank you both- I guess there's no easy answer to my question. I'm having very regular blood tests now so they should pick up any change.

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