Hi David & Mavis,

Thanks for the concern and the nudge.:-D I last posted on Monday but I suppose I have been a bit quiet for me lately.:-)

I took in my 24 hour urine collection last Thursday and had my bloods taken in reediness for my selection for the Carfilzomib trial… or not. I then stood back and waited for news of the results. I…[Read more]

Has anyone got a link to Jet's blog?:-)

Dai.

So far, so perfect around here. The snow remains in gardens and fields but the roads, from A to B, back-lanes and side-streets are clear.. allowing those that need to move around free access to do so while the kids of all ages can enjoy themselves rotten. 😀

No fresh fall since Sat PM.

Dai.

Saturday 6pm… the snow is creeping across the east Midlands… the Vale of Belvoir is white… a bit more icing sugar than carpet but it is due to come in a bit thicker later on. Snow is one of my guilty pleasures… I understand how troublesome it can be for so many but the sight of it falling and waking to its clean serenity is still one of…[Read more]

Hi Eve,

The initial infusion of each cycle took the longest because we had to have a consultancy where the level of treatment was determined. On those days a typical pattern would be:

In at 10.45am for bloods followed by consultancy at 11am. We would then either get comfortable for a few hours or even pop into town for a shop and lunch -…[Read more]

Hi Nadine,

I was in a similar position to your Mum… my CDT was very successful and I went through the prelims for my SCT but developed an infection in my Hickman Line the day before my harvest was due to start which put everything back by 3 months in the end.

I questioned the SCT at that time… I felt well after the CDT and it held well…[Read more]

My Dear Chrissie,

I can fully understand your feeling cheated… the rationale from the medics that MM is an individual disease is proven by the seeming inequality of prognosis treatments and outcomes. The UK funding body 'NICE', lays down the rules for treatments – i.e…

1) Frontline treatment (CDT – RCD etc.,)
2) SCT 1
3)…[Read more]

😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 🙂 😎 😀 :-)…[Read more]

Hi Eve,

Perhaps Slim has suffered from a few bouts of 'cold turkey' without realising it. I know that since being on morphine my short term memory has been shot to pieces… I dread forgetting my clexane injections but fingers crossed I haven't done so this far.:-) I collapsed at home with a pulmonary embolism once… and once is enough for…[Read more]

Hi Eve,

Some people manage quite good health when in remission periods, some even manage to return to work and travel freely. I think it is down to the amount of bone and other damage you accrue… that and the levels and types of medication needed each day.

I have quite extensive bone damage… and while I can walk unaided my back soon…[Read more]

Hi Eve,

That is a good question with a very good answer. It is difficult to reduce one's philosophies into words, never mind one answer…

My own ?

The one thing that lifts me above all difficulties is the knowledge and the certainty that I was loved.

Dai.

Hi Mandy,

I'm sorry that your mum is having such a rough time at the start of treatment. Peripheral Neuropathy (PN) can be both debilitating and painful and if your Mum has been hit so bad then the medics should be looking at the possibility of another treatment regime. A couple of years ago the standard frontline treatment was CDT…[Read more]

Listen you lot,

I have grieved… for my father, of whom I take after in so many different ways and for my beloved Nana, who loved and understood me when so many didn't… but never for a wife or partner and I hope I never have to.

Time and condition make me the firm favourite to go first but, as Janet has said, on several occasions, you…[Read more]

Hi Gill,

I do hope that you both find next Xmas with Stephen in a position where the medics have found a treatment that is keeping mm at bay. I understand your concerns re dex and attitude etcetera… I hope that Janet never has to feel as you do now and I will certainly try to ensure that is so… but who knows?

I have said it before and I…[Read more]

I got through 7 cycles of Velcade and was told I didn't need the 8th because I had been at 0 all round for 2 months…. that was October 3rd… on January 9th I was told that I had relapsed (and that my levels had started rising almost immediately).

I have heard of people getting a good remission from Velcade but it seems it only worked for me…[Read more]

Thank you one and all,

Yvonne didn't suffer at the end… it seems a nice and peaceful way to go in my eyes and I would like to think that I will slip away like that. I know Yvonne knew the possibilities and I know she had started her goodbyes a good while ago.

It's not earth shattering or tragic… just very sad for all those who knew and…[Read more]

Hi Amelie,

I officially relapsed 10 months into my SCT remission and 12 weeks into my Velcade remission… and both times I 'knew'… although to be fair I gave this latter a 50/50 chance. Yes there were niggles but then again there are always niggles. For me it was more my 'Goodbut' principle… i.e. I felt good… but knew that I should…[Read more]