https://forum.myeloma.org.uk/members/Frances/activity/ Activity feed for Frances. Thu, 14 May 2026 09:36:01 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 b3fe31b10eae562f39e9a7233b956c6d http://www.myeloma.org.uk/forums/topic/zometa-and-dentistry/ Fri, 04 Sep 2015 10:00:10 +0100 I have to have a tooth extracted and I have zometa infusions every month. Has anyone got any positive experiences of this? (No horror stories, please)

]]> 2e90098b2ecdefe0f3893054f4add7aa http://www.myeloma.org.uk/forums/topic/low-neutrophil-counts-on-treatment/#post-123496 Wed, 05 Aug 2015 14:35:50 +0100 Thank you Dusk and Fiona – I’d never heard of GCSF but I’ve looked it up and it’s useful to know about.

]]> 5045b27a11b59c9989f69c3afc398e86 http://www.myeloma.org.uk/forums/topic/low-neutrophil-counts-on-treatment/#post-123492 Wed, 05 Aug 2015 11:01:19 +0100 I’m on partial remission, still taking lenalidomide and a low dose of steroids. My last blood test showed that my neutrophils were low, and so I’ve had a couple of weeks ‘holiday’ from the beastly drugs. I have another blood test next week. My consultant hasn’t really explained what this implies, though we’ve looked it up and seen that it’s made…[Read more]

]]> b808753aba423cb0230fb4c9577fd566 http://www.myeloma.org.uk/forums/topic/i-need-encouragment/#post-118718 Fri, 10 Oct 2014 09:00:59 +0100 It seems very unkind of your consultant to say that most people ‘sail’ through treatment. Also not true – people vary hugely in their reactions. But you will find that you get used to the complicated drug regime and better able to cope with it.
It sounds as though you need support which you aren’t getting. Have you got a Maggie’s Centre…[Read more]

]]> 871204916194323d4d6f85c71fd5602b http://www.myeloma.org.uk/forums/topic/diagnosing-myeloma/#post-118593 Sun, 05 Oct 2014 10:20:34 +0100 Blood tests are the first port of call, and often the way people find out that they have myeloma in the first place. They indicate what the paraprotein levels are. – the bad guys. As far as I can tell, up to a pp level of 30, it’s okay. Warning bells ring beyond 30. They also give indications of kidney damage and general functioning. Xrays show if…[Read more]

]]> 95d4bec84feebc0fd7a301b3b38d0fbd http://www.myeloma.org.uk/forums/topic/testing-for-mm/#post-118578 Sat, 04 Oct 2014 10:10:28 +0100 If you’re nervous about the test, then get them to give you any pain relief that’s going – they shouldn’t make you suffer even in anticipation. I’ve had four so far – they aren’t pleasant, but they’re actually not too bad, and the nurse who gave them to me was very good, talking me through all the sensations.
The only time it was really…[Read more]

]]> 7b7d101da03aaf7b6fbedff3fe3243ec http://www.myeloma.org.uk/forums/topic/help-needed-2/#post-118250 Sat, 20 Sep 2014 11:24:08 +0100 Signed, and posted on Facebook and twitter

]]> 72944010314557dcf55f5874de95e56c http://www.myeloma.org.uk/forums/topic/eye-problems-3/#post-118163 Wed, 17 Sep 2014 10:23:45 +0100 Apparantly I did have a bleed in the eye, which is caused by pressure and is a result of mm medication, but it seems to have cleared up spontaneously. But my main problem is a macular hole ( a tear in the retina, which they say isn’t caused by mm – do I believe them? Anyway it entails an operation, after which I have to lie on my stomach for a…[Read more]

]]> 4cbc7b6af54e5322a6cfa055fa6ca657 http://www.myeloma.org.uk/forums/topic/recurrent-severe-back-pain/#post-117729 Wed, 27 Aug 2014 09:31:03 +0100 Dear Martin,
I’m 70, and was diagnosed with mm last year. I thought I’d got away without back pain, but in March what felt like a grumbling muscle suddenly got painful, and they decided I had three stress fractures in the lower spine. I found it quite hard to get notice taken of this at first but then attention kicked in, and since then…[Read more]

]]> 24b316e3ec8af4434003ef4997341dd6 http://www.myeloma.org.uk/forums/topic/eye-problems-3/#post-117728 Wed, 27 Aug 2014 09:19:25 +0100 Thank you for all comments. I see the eye surgeon next week, and I must confess to feeling uneasy. I can cope with the chemo rubbish, but don’t like the thought of someone messing with my eyes! Wish me luck.

]]> c9b77562ae00a7416799250b34c41a0d http://www.myeloma.org.uk/forums/topic/eye-problems-3/ Sat, 23 Aug 2014 09:38:29 +0100 You’d think having mm would be enough without developing eye problems too. I find I’ve had a bleed in one eye, causing a blurred centre to the vision – this is apparently a myeloma side effect – and I’ve also got a hole in the retina which may be unrelated. I’m seeing an ophthalmic surgeon in a few weeks about this, and the word operation has been…[Read more]

]]> 80169105a8a19f2ef1353a839c2ce5f6 http://www.myeloma.org.uk/forums/topic/trivial-question/#post-117063 Fri, 25 Jul 2014 09:04:48 +0100 Thank you, Michelle and Rebecca. I think I shall sneak into the chemist and find a very gentle temporary colorant shampoo. My hair is very brittle and absorbent at the best of times, so I shan’t need to leave it on very long. Important to try and look good while all this rubbish is going on!

]]> a743747bc2a07eeee9e8fd4aea7bce40 http://www.myeloma.org.uk/forums/topic/trivial-question/ Sat, 19 Jul 2014 11:32:45 +0100 After several months of chemo, my hair colouring is starting to look patchy. One of the nurses told me that as long as I use a temporary colourant – without bleach – rather than a permanent dye, I should be able to colour it. Has anyone any advice on this? I’m not really glad to be grey.

]]> 13a5a8ea6fb026b40cf9150531f58ee9 http://www.myeloma.org.uk/forums/topic/problems-gaining-access-to-hospital-test-results/#post-116895 Sat, 19 Jul 2014 11:29:00 +0100 Do they send the results to your GP? You might be able to sidestep the process that way if they do. My consultant often forgets to send me the results.

]]> f7fe63fc16da8ef7890327ebf47ad6be http://www.myeloma.org.uk/forums/topic/muscle-spasms/#post-113520 Thu, 06 Mar 2014 10:28:09 +0000 Thank you for all your helpful comments – I went to my GP who put me on strong painkillers so at present I’m managing the condition, though I guess I can’t stay on them for very long. I had an x ray a couple of weeks ago, so I reckon I’m fairly up to date, and I’m about to have zometa. I’ll see how al this goes, and then start making a fuss if…[Read more]

]]> ca8975ad93d7a4f167a8d03afe9c9273 http://www.myeloma.org.uk/forums/topic/muscle-spasms/ Mon, 03 Mar 2014 09:50:31 +0000 My myeloma has stopped smouldering and I’ve just progressed to treatment. My main problem at present is a bad back – which has been lurking all year and seems to be getting worse, not better. My doctor says this isn’t mm damage, though my bones are starting to show signs of it, just general ‘wear and tear’. Well, I don’t think the mm is helping…[Read more]

]]> 4cd08c7941f07b5cddef43c44e8af7c3 http://www.myeloma.org.uk/forums/topic/bayer-ceo-new-drug-not-for-poor-people/#post-112647 Sun, 09 Feb 2014 13:19:59 +0000 Thank you Andy. That was a very helpful and reassuring post

]]> 41bec521bf15bf7fc8b8b0cd055bda23 http://www.myeloma.org.uk/forums/topic/bayer-ceo-new-drug-not-for-poor-people/#post-112631 Sat, 08 Feb 2014 10:15:03 +0000 Please can you tell us a little more about what these drugs are that we’re not being allowed access to? I’m currently in a somewhat stressful limbo of knowing that I’ll have to start chemo very soon, but with no idea of how it’s going to affect me, and precisely what the drugs involved will be. But I do need to feel that my haematologist is going…[Read more]

]]> 3cce3e560f5549c90879b577bc34e94b http://www.myeloma.org.uk/forums/topic/the-guesswork-that-is-myeloma-treatment-at-present/#post-112175 Fri, 24 Jan 2014 09:21:10 +0000 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…[Read more]

]]> 8d54fcfbc45aacbd03c6ddc6ea11c8fa http://www.myeloma.org.uk/forums/topic/merry-christmas/#post-111606 Mon, 23 Dec 2013 13:15:53 +0000 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.

]]> d1a77b2140bd7be8e69aaad479e261ce http://www.myeloma.org.uk/forums/topic/hi-3/#post-111440 Mon, 16 Dec 2013 12:14:12 +0000 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…[Read more]

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