Scarborough is a beautiful sea-side town and because it meant something to your whole family I am sure that the weekend will be a bitter-sweet affair. Make sure all of you do get your pampering, preferably after your scattering of Michael's ashes. I have only ever visited Scarborough, never stayed but I have enjoyed several weeks at Whitby Folk…[Read more]

Thanks Tom… and you stay fit and relatively healthy for a long, long time to come my friend… believe me it does us good to know that at least one of the old guard is beating this bloody disease back down the field.

You and Elaine have both taken a battering these last few years and you deserve every good thing and every bit of luck that…[Read more]

Hi Keith,

Melphan I know of course, most of us remember it fondly 😉 but Prodeserone is only vaguely familiar, I know I have never encountered it… is it a type of Steroid/Dex's big sister?

With being Bence Jones I deal in Kappa Light Chains and I'm not very good at equating them with PPs but I do understand that 84 is quite high… and…[Read more]

Hi Tom & Eve,

I took 2 paracetamol yesterday afternoon once I had got down to 37.7 through drinking for Wales and my temperature was down to normal within 3 hours. I was soaked through with sweat so the paracetamol had done its job. It has remained stable and I am feeling much better. Still sweating buckets but it is DexDay tm so nothing new…[Read more]

Hi Dan,

You need to speak to a MacMillan nurse regarding putting in a claim for DLA (Disability Living Allowance). DLA is separate to any earnings, pensions or savings etc., and your Dad will most certainly qualify. He will also qualify for the mobility component as well, which means a new car (changed every three years) so if you haven't…[Read more]

Hi All.

I had my first Zometa infusion yesterday and today I have had a borderline high temperature (38.20) which I have sort of brought under control (keeping at about 37.70 at the moment) with a couple of paracetamol. Being neutropenic I don't want to ring in unless it gets to 38.60 or above because City Hospital is nothing if not thorough…[Read more]

Thanks all,

I had Infusion 2 this afternoon, followed by a fix of Zometa… my first ever. My consultant said I had slipped through the net and that I should have been on Zometa for a year or so! Well there you go. 😀 :-0 Every 4 weeks from now on which will fit in with the Bendamustine treatment, so no extra journeys for the time being at…[Read more]

I had my pre-Cycle 3 Mk 2 consult today and my bloods are down (except for my platelets which stay at 105) including my Neutrofils at 0.8 which means I am neutropenic… again. It seems that this will be the pattern while I am on Bendamustine but that's OK as long as I can continue.

The 20 day rest period between infusion 2 and the next…[Read more]

Hi David,

After reading your post about your sneaky wife I got Janet at 11.59pm last night.

I blamed you. 😉

Dai.

Hi Sue,

I am so glad that the funeral went well… a time where you have to share your grieving with wider family and friends. But now it is your grief, yours and your daughters and inevitably and eventually yours alone.

I suppose relief is a genuine reaction, I am sure that Janet will feel relieved when I go… not of my going but of the…[Read more]

Hi Terry,

The conditions caused by your Plasmacytomas sounds interesting but nothing I have ever heard of before on here. I think they are doing the right thing by keeping your treatment going while they try to sort out the other problems with RT and the like… because it doesn't sound as if those problems are being caused by the Bendamustine…[Read more]

Hi Jean,

After all Frank has had to put up with and his reluctance to go ahead with the SCT in the first place you can hardly deny him a rounded 'I told you so'!

As Tom said, we have a wonderful NHS as long as it's weekdays. My record with infections are always just before or during the week-end and I know that I'm in for a torrid time with…[Read more]

Hi Ann & Pete,

I'm really sorry that Pete has been caught up in one of the side-effects to such a degree… I know it's not much comfort but there have been plenty before you with similar problems but they all got past this stage and then had a relatively smooth passage for the rest of their SCT's… I hope it's the same for Pete.

I remember…[Read more]

Hi Louise,

It took 5 days on the harvester plus 2 injections of Plerixafor (sp) to get 2.1 M of Stem Cells which resulted in my having 14 (fourteen) bags of Stem Cells returned… I have been reliably informed that that was a worlds record. 😉 😎

I must say that while it was a lengthy process over 2 days it was not uncomfortable in any…[Read more]

Excellent news Ozzy, as David said that's a fair drop and puts you firmly in the zone. 😎

Best of luck with the 2nd SCT… have they given you a date yet?

Dai.

Hi Keith,

I was neutropenic for 10 days recently and I know that it's a bit of a bugger when you are fighting without much support from your body. My neuts came back up to 1.49 just in time to have my treatment this Tuesday with another planned for next Tuesday… as long as my neuts stay at 1.0 or more.

I do hope your BMB points to a way…[Read more]

I'm glad that you two concur… a family argument might have made good drama but overall I'd rather settle for agreement. :-0

I'm sorry that the relapse was confirmed but the medics are on the ball with the Velcade starting right away. I seem to recall that the best results for Velcade occur in the first couple of Cycles… then it settles…[Read more]

Hi Tom,

My veins are a nightmare to find, you can see the nurses in the Day Case suddenly finding themselves very busy with other things when I am shown to a chair. 😀

There is a Chinese male nurse called Jeff who is 'bigged up' by the other nurses and he usually accepts the challenge and finds a way in… yesterday it was Liz, the first…[Read more]

Hi All,

Just got back from the Day Case Unit where I had infusion 1 of Cycle 3… infusion 2 to follow next Tuesday. Everything went smoothly, the nurse found a vein and captured it first go… we all kept an eye on it, checking and double checking as the saline wash went through, not quite believing that it could have been that easy but it…[Read more]