Rant, chat, gossip and surmise away… you are not going to upset me with either conjecture or facts… not this side of my holiday you wont. 😎 😀 🙂

To tell you the truth Eve, my primary involvement in this whole kappa/lambda/ratio mystery is one of fascination. I'd like to get to the bottom of it as much as anyone… and anyway, I woke…[Read more]

'22/2/11— 258.458 – [b]264[/b]
15/3/11— 239.611 – [b] ?[/b]
05/4/11—- 121.425 – [b]13[/b]
31/5/11— 14.672' – [b]11[/b]

3 of my first 4 readings compared with Slim's (Mine in bold).

My consultant tells me that the measurement for CR (Complete Response) starts at 18… so we are both in the complete response zone – I have…[Read more]

Hi Min,

So it seems that Slim and i have exactly the same myeloma – light chain/kappa. Do they not have access to the 'Freelight' test at your hospital? My consultant started using the freelight because it is just as, if not more, accurate than the urine and/or the bone marrow biopsy… I know that each test is expensive but if they have the…[Read more]

[i]Hi Dai[/i]

Hi Eve, follow me down, we'll do this in stages…

[i]Its about the Velcade,Slims on 2.3 at the moment 2 shots one Tuesday and one Friday, 9 oclock bloods then although told to come back at 1 oclock did not get jab till 3.30 .left home at 8 got back at 4.30. (screaminggggg) poor dog desperate for a leak. Will not do that…[Read more]

Good old gallows humour. I have a bunch of old friends… good and close friends… and family… who can't abide to even talk to me, never mind make gaffes or find ways of laughing it off (which I thought most of them would do).

They are sacred stiff of their own mortality and to voice mine would mirror theirs.

I think I prefer the honesty…[Read more]

[b]'Accio myeloma disappearus'[/b] – that's the spell but my peripheral neuropathy is making it difficult to work it properly.

get your wands out people… flick and swish: [b]'Accio myeloma disappearus'[/b] 😎

Dai.

(We went to the Cinema on Wednesday and watched the final Harry Potter film in 3D – 9.5 out of 10)

I know the feeling Min and I fully understand Peter's position…. but he has to seize control… he has to demand a sit down with his consultant and lead nurse and list his concerns. Its no use him fighting you over his treatment… you know when to act as an intermediary concerning practical health matters and you have a clearer idea than him…[Read more]

Thank you Roz… I missed your garden post but I like the simplicity and clean lines of japanese gardens and yours looks very similar… a rake and some weedkiller and you are away. 🙂

Hi Bridget… I was amazed at myself by how easily pleased I was. Janet stopped off at a petrol station mini-supermarket and I bought smoked cheese, sausages…[Read more]

Come the time and I'll be their Huckleberry!

I have only ever tried drugs the one time… I was a mature student (about 23) and I shared a room with a London Brickie and Poet (one and the same person). He was into cannabis and knew his stuff… I preferred 'Bonnington's and Robinson's Bitter… I have never smoked cigarettes, not then or…[Read more]

Me? I'm lost for words at the moment… I feel close to him but more later.

Lots of love to you and yours. xxx

Dai.

I would recommend backing off a tad on the Oramorph at night Bridget… but I'm so intrigued by your dreams that I think I'll actually encourage you… and trying upping a couple of mls to see what occurs. 😎

Good morning Gaye… four days of good weather forecast for the east Midlands…. that should please all the farmers around here (ratio…[Read more]

Start shouting… make demands… get guarantees that Peter will receive the same level of treatment and care at home as he would in a 'best condition' ward. I recall my SCT and I would have hated to have been at home without the proper support of healthcare professionals… be they MacMillan or the District Nurse team – co-ordinated by a lead…[Read more]

Well I woke up tired this morning… but with a determination to remain positive and forward looking. Its all in the head I am sure but I felt very positive as we set out for the hospital and even drove for the first time in a while… it felt good and my left leg…( which was looking grotesque just over a week ago..). is looking more or less…[Read more]

I was in the Day-Case Unit at City Hospital, Nottingham this morning and just missed Jet leaving for home.

So that is Keith and Jet home… with Debs hopefully hot on their coat-tails… good luck on your journey's to recovery peoples… take it easy but take it… trust your instincts, listen to your body and good health. 😎 🙂

Dai.

Time out!!!

That's it… infusion No.4 of Cycle 5 complete… I now have my 10 rest days (first 4 usually grotty with a gradual build up to feeling pretty good by day 10), with platelets, neutrofils and HGB on the up towards the end…

Only this time I will not be starting Cycle 6 because it would mean a break mid-treatment for my holiday…[Read more]

Hi Bridget,

I am glad that the tumour is myeloma related.. and that the radiotherapy is lined up to nuke it. I am however sorry that this means the end of Revlimid as a frontline treatment… as Jo says, perhaps thalidomide on its own or in a combination as a maintenance therapy might be the way forward.

The Americans, led by Dr. Berensen…[Read more]

Hi Bridget,

I am angry for you… angry with your tumour for forming just when you seemed to be finding a little breathing space… angry because it is one step froward, two steps back… but not for long I am sure.

You say the tumour is deep… I suppose they now have to identify if the tumour is myeloma related or a secondary, unrelated…[Read more]

Hi Eve,

Quick question… what strength of Velcade have they started Slim on?

I started on 2.79 for the first two Cycles… 2.1 for the third and 1.49 for the fourth and fifth… each reduction being necessitated by side-effects… something to watch out for and to consider. I'm glad they started high because it obviously worked in…[Read more]