Hi Siobhan,

Can you tell us about the funeral arrangements for your Mum? I would like to know in order to have some quiet time during the service… To think about our friend and to share a smile and fond memories.

Regards

Dai.

Hi Avis,

Great news all round… your remission firstly and then the adoption of Myeloma UK as your company's chosen charity.8-)

Are you back at work? If so I hope you are taking things slowly and easily… don't give MM a chance to bite at you because you are overdoing it. I don't think for a second that doing too much will reactivate…[Read more]

Hi Stephen,

Like you I only achieved enough stem cells for a single procedure (2.1 million) after 5 days on the harvester, including two visits back to the hospital for 2 seperate midnight doses of Plerixafor. They struggled to get there but we finally made it (although nobody thought to let me know until the following Monday). The struggle…[Read more]

Hi All,

As I understand it Rev & Dex are good at keeping things stable for a goodly period (current median 30 months and still rising) but it is a therapy NOT a chemotherapy… so Zero readings are not to be expected if your starting position was out of the box (i.e. above 'normal' – whatever that is).

So R&D might cap a reading that is…[Read more]

Hi Rachael,

Welcome to the forum. First things first, what is your Mum's name and where is she being treated? (Not necessary information, I'm just being nosey).;-)

I have had several incarcerations with infections and the like over the last three years (my wife tells me it is 5 times, so there you are) so they do happen and the medics…[Read more]

Hi Siobhan,

After three days of gum infection I went to bed feeling sorry for myself, in pain and uncomfortable. Then I read the news about your Mum and my pain changed.

Your Mum was a truly inspirational person… Not in any extraordinary way but in the everyday, ordinary way. She had the ability to pick you up and dust you down and set…[Read more]

God bless and keep you close girl. You were my friend when I needed… you have walked beside so many of us, cheering us up when you were as down as any of us… I'm hurting so I'll leave it at that for now.

Dai.

Hi Jane,

Welcome to the forum… if not to the reason for its existence.

CDT is not much fun but I always have a good word for it because it worked very well for me. Like any treatment that includes active chemotherapy your body goes through the mill but if the end result is good then it has been worth it.

I wish you well in all your…[Read more]

Hi Jennah,

What treatment is your Dad receiving? If it is Velcade then once you eventually get seen to it will be a quick injection into your Dad's tum and then its over… of course, getting ready can mean a lot of waiting about. If it's something else then it can mean a lot of sitting around… where your Dad will inevitably fall asleep at…[Read more]

Hi Onlyme,

My consultant broke the news gently by saying that there was an upwards move but it needed confirming over 3 months… just to make sure it was not a blip, which do sometimes happen… but the 2nd month's increase put paid to hopes of blips and glitches… we knew. As a matter of fact I knew after the 1st rise with out being told…[Read more]

Hi Gill,

Bridget had an infection or two which meant hospital time and now she has a case of shingles which I believe have affected her eyes. She has made one or two quick posts on here recently but is more active on Facebook. There are several forum members active on FB for social chat etc… led by Tom & Min… you could always make friends…[Read more]

Hi Keith,

I have been on Enoxaparin since last July… 6 months at 140mg per day and then 40mg maintenance since (I developed a DVT while on Velcade… (unusual I'm told but there you are)).;-)

I inject myself… it is very easy and usually painless (unless you catch a bruise and then it stings a little but nothing much even then. The…[Read more]

Well I got so excited about feeling sleepy that I thought … toilet or not toilet… but I erred and went and stayed awake until 6am. So, two and a half hours sleep and then meds and breakfast followed by another hour's sleep.8-)

But for all that we had a productive day and a lazy late afternoon without a sign of a doze… now I've come to…[Read more]

Hi Keith,

Well I am four months ahead of you on Rev @ Dex. My side effects are visible with the usual. DexEffects tm. The RevEffects tm. are less visible but they are the ones that determine good weeks and less good weeks. Fatigue seems to be the worst culprit but I'll take that and so far I can honestly say that if it carries on like this…[Read more]

Hi Jean,

The standard agenda for treatments in the UK is laid down by NICE (The National Institute For Clinical Excellence) which actbotany as a guidance and funding body. Their 'guidance' Is actually quite a strict funding regime… You can negotiate treatments away from their heddle but not from their funding, which carries no guarantees…[Read more]

Hi Eve,

I believe that the NHS is a wonderful institution within their doors… but the second you are outside of their walls you are out of sight and out of mind. With a lot of conditions, MM to the fore, you need follow up and support, desperately so at times.

Many such occasions have proven to me that from the moment you leave the…[Read more]

Hi Jean,

I fully understand your concerns… you want to know what is available and how it will affect Frank. I also understand Frank's viewpoint… he doesn't want to have to accept a treatment that will make him miserable for 4,5 or even 6 cycles… especially if the side-effects, in this case PN, become a semi-permanent condition of his…[Read more]

Hi Liz,

I don't often see Prof Russell but he was excellent during my harvest, not hesitating to sign off on 2 courses of Plerixafor to ensure I got the minimum 2 million cells for my SCT. His 'bedside manner' is supposedly a bit abrupt but I have always found him approachable. I usually see Dr Cathy Williams or Dr Jenny Byrne… both very…[Read more]