Hi Sue,

Thanks for your update, its good to see how others cope with their treatment regimes.:-)

I spent 4.5 hours in the Daycase Unit yesterday – the last 2 hours waiting for the single busy Doctor on call to get back to me on what other treatment to take home with me as well as the 5 day course of blood thinning Enoxoparin injections… I…[Read more]

Hi Sarah,

I'm up and about earlier than usual today… trying to give the leg some gentle exercise – we are off to the Garden centre for a quick visit after lunch and then home and rest it up.:-)

I know the inherent dangers but it has been like this – and reported on every occasion – for the past 4/5 weeks… I am just determined that…[Read more]

Hi Mavis, thank you for replying and your support. 🙂

I don't know why Dex has suddenly transformed… perhaps it can get on with its job quietly and more efficiently because it hasn't got to fight against the larger doses of Velcade… more harmony, less harassment… perhaps.:-)

I'm concerned with the swelling/discomfort in my left leg…[Read more]

Hi Gill.

I had a week in hospital the week before last with a high temperature – they took 2 lots of blood culture (making 6 in all) but the high dose general penicillin anti-biotics they gave me sorted the problem before anything showed on the cultures. (A Doctor told me that there is a 90/95% failure-to-show in all blood cultures and that my…[Read more]

Hi Peggy,

Does your daughter like yoghurt? You can buy a stock of those very small, petit yoghurts… you just peel back the lid, drop the dex on top and one good scoop picks them all up and they go down so easily… followed by a drink of water… you can then put the rest on your daughters cereal if she likes it… but given the size of the…[Read more]

Sounds like you had a great time on the rivers David and now on to St Ives, one of my favourite places – St Ives would be my first choice given that you are going to share it with family.

The holiday bargain was an added extra I must say, well done! Together with your Saints and Ladders holiday earlier this year you have done well! 8-)…[Read more]

I watched the programme last night and found it very moving. I often see patients in the day case unit in their early 20's, mostly with Lymphoma and even a MM patient just turned 30. In Alex's case it was an almost instant call of terminal illness and he was determined to make the most of the rest of his short life… although he was surrounded…[Read more]

Hi Helen,

The muscle pain should be the residue from the GCSF and should go pretty quickly – I am so glad your numbers were good, hopefully enough for 2 SCT's (usually 5 million or more but 4 million will be enough).:-)

I hope you get your dates sorted out soon – there are plenty of back posts that give you information in that regard and…[Read more]

Hi Helen,

I had the Stem Cell Collection from h-e-l-l … 5 days on the m/c including 2 late night return visits to the hospital for very expensive Pleriaxafor booster injections which scraped 2.1million cells… the bare minimum for 1 SCT… and I wasn't 'wiped out' at all. Apart from needing the week-end to recover from a busy week I was…[Read more]

Thank you Bridget,

You are right of course and the voice of reason as always.:-)

I have every reason to be happy and I know that I am… considering what I have achieved so far. I have said that I can't complain and to that I should add that I am very happy to be where I am… and hoping to be happier still as my treatment progresses.:-)…[Read more]

Hi Scott & Gill.

I had my consultation yesterday followed by Velcade Cycle 4/1. My Kappa Light Chains reduced from 13 to 11 and although I was slightly disappointed my consultant was happy. She explained that CR starts at 18 and goes down to 0… so both 13 and 11 are well within the technical range of CR. On hindsight I am happy because I…[Read more]

[b][i]'But by the time you buy the 12 inch hot dog and giant popcorn they get it bac[/b]k!'[/i]

Its a good job you didn't have one too – it would have cost a fortune! :-0

Seriously though Min, its good to see Peter taking an interest (in the weights) and showing a willingness to get out and about (the cinema). It would be so easy to say…[Read more]

Hi Jet,

[b][i]'I've had different responses from different medical staff regarding how I'll actually feel in terms of energy, weakness, appetite, etc.

One nurse gave me the impression that I'd be completely wiped out, have no energy, need to sleep a lot, lose interest in food and not want to see anyone or do anything for quite a few weeks…[Read more]

I agree with Gill… good news is in short supply at the moment so your news is most welcome.

I think that sometimes people are reluctant to post items of good news, remissions, successful treatments etc in case it is deemed to be crowing or being insensitive when others are going through the mill or just starting their journey.

Personally…[Read more]

Bara-Brith is basically a Welsh fruit-loaf (literally 'speckled (or mottled) bread'. It is delicious on its own but much better with butter. Janet has her own prize winning recipe but Delia's is also very nice. Janet won't pass hers on 😛 – so here's Delia's. :-)…[Read more]

Very, very interesting. It works in a similar way to Velcade… I'm wondering if this is in trial somewhere in Myeloma World… if not why not? Is it a novel agent or does it need a pal (Dex/Thalidomide etc.,) or is it a genuinely new agent that just needs letting loose?

I'll watch this space. 🙂

Dai.