Thanks for that Jet
our you ok and ready for your SCT been looking at your blog Good luck
lOVE jO X

Mavis

I didnt get to much bother with CDT a bit of DEX moods (ask my husband) and a bit of constipation last months bloods were paraprotien in a band to fient to measure so I expect than means 0 at the moment lets hope fingers crossed it lasts
Love JO X

hello Dia

I am not on any drugs for mm at the moment just sodium bicarbonate and alphacalcidol plus a 4mg steriod all for my kidneys. I had 2 pulses of DEX on their own then 4 pulses of CDT which put me into plateau this was from jan 2009 to april 2009 then i took a small dose of thalidamide for a further year no problems until PN set in…[Read more]

Hi Jollyroger and Chrissie

If its any help to you,I will tell you,I will tell you about my husband,
66 years of age fit and young looking,6ft 1 and 14 stone,4 cycle of ctd.now 5ft 8 and weights 9st 8lb.looks 20 years older.Had septic pnuemonia not pretty,but he is alive and improving every day although slowly.

It hard to cope with,I thought…[Read more]

That is interesting Jo because as I have said previously, I wish I had on reflection (backed up by a pretty strong conviction at the time) held strong and postponed my SCT until after my CDT remission failed… but that's no longer an option and I didn't get enough cells for a 2nd. 🙂 >:-( 🙁

The video posted by Jet shows the concerns in…[Read more]

Dia
I agree about the dosing I have been reading a lot of stuff from America and the conclusions they come to are most people are over dosed just because it is the recommended dose. I go to UCH once every four months and they are doing a lot of work with people just giving weekly doses of Velcade and coming up with good results they also said to…[Read more]

Dia

big mac mmmmh sounds more like a safari than lunch lucky there wasnt any seagulls they might have mugged you they seem keen on MCD'S 😎 Janet must love your small suprises what will you think of next

Love Jo;-) x

Hello Chrissie

I think the treatment which is chemo is very agressive and can leave some people really down, ill and depressed once it starts to work you feel a whole lot better but it is a struggle at first as for the shakes i had terrible ones due to kidney damaged cause mainly by to much calcium in the blood they gave me chemicals to get it…[Read more]

Thats alright then you had me worried for a while

Love Jo;-)

Hi Chrissie I can understand how hard it must be for you to watch your husband having to go through treatment and there is a time where yhings seem worse But this is usually because they need to hit the caner cells hard to get rid if as many as possible as quickly as possible If he is now going to have Velcade I would think they must be reasonably…[Read more]

Hi Jr,

How old is your Mum and did they give a name to her Myeloma… i.e. Heavy chain or light chain? For instance if paraproteins were mentioned it will be heavy chain myeloma. What treatment have they mentioned… it is usually CDT (Cyclo, Dexamethasone and Thalidomide) but there has been a plethora of clinical trials that are proving to…[Read more]

Wow, now that is interesting. Strange but I have always imagined that major ways forward for diseases such as MM might well be found from other areas of medicine… side products and such… and this is a perfect example.8-)

Dai.

Thanks Tom and Jean,

Ideas are inspirational not frightening… I know the processes and procedures inside out but it is not the technical know how that matters, it is the enthusiasm, countered by fiscal realities and firm commitment that either quenches or instills the confidence to move forward towards an actual event.

In truth I imagine…[Read more]

Babysteps, cant wait for the real thing 🙂 I can make tea 🙂 and offer crisps for sale cos MY voice is well dont ask he he.

Good Luck Dai

Tom "onwards and upwards"

Hi Dai

Well its not far from Nottingham, click here :::::::: http://www.danbrit.co.uk/pdfs/flixboroughwharfbrochire.pdf

and take a look, my job was in the Steel Terminal, before I got MM and went on Light Dutie's, it will do me for 10 years the retire (if they allow me to continue on light duties)

Our Company run about 6 wharfs (own 3 and…[Read more]

Hi Jollyroger

So sorry to hear about your Mum's MM 🙁 but you have picked the best site going, for up to date news, advice from great people that are going through have gone through what you and your Mum are.

Yes your Mum is going to need help as she goes through her treatment (the more the better)

At this early stage the best advice I…[Read more]

Hi no wonder you are in shock it is devastating to get the diagnosis of cancer and it does take time to sink inBut during these early days of your mums treatment you will begin to come to terms with it as you get more info .Myeloma is a very individual cancer so your mum will probably have several tests and scans to see if there is evidence of…[Read more]

hi Jollyroger

Yep, your in shock mode,We have all been there.One minute they are fit next minute seriously ill.I kept telling people he,s so fit!!!!!thats my husband by the way,lovely man than he is:-)

Sorry about your mum,it is very early days,t would be stupid of me to tell you not to worry,one bit of advice I can give you is,start…[Read more]

Ha, well the production team is forming, thanks Jean, I'll do a little exploring of ideas with Myeloma UK and possibly MacMillan and see if there is any interest..

It will have to be examined, a proposal put forward and a viability report showing concert and recording costs plus reproduction, artwork et al. The initial point would be to…[Read more]

Ah, tell me more Tom… about the Trent work, it sounds interesting… are you anywhere near the Nottingham stretch?

Dai.