Hi Min,have you actually been TOLD that cost is the reason why a light chain blood test will not be given?
If so you should complain most strongly as this is tantamount to refusing treatment that is vital in finding the reason for Peter's problems.
And keep at it until they do what you pay your taxes for and for what they are paid to do which is…[Read more]

Hi Norman,all I would say is forget about food as you won't even want to look at it let alone eat any once the Melphalan takes hold.
What I would advise is that you suck icecubes for 20,mins before and after the Melphalan is infused (this is vital).
I had my sct at the RVI Newcastle so it's not going to be any help to you but just for the record…[Read more]

Great to see you back Kevin.
Wondered where you were and pleased you are back on duty.

Keith.

Hi Phil,yes not doing too bad on the whole but felt rotten last week for 4,days.
Have had slight tingling in my feet and fingures but seems ok now.
Very tired and my taste was practically nil for a week after finishing the 2nd cycle.
I am down for 8,cycles and start the 3rd on Friday.
I can't in all honesty see me completing all 8 cycles but…[Read more]

As a fellow Dex sufferer I fully understand how you feel.
I've been like a Volcano on the verge of eruption for the past week now.
The least bit thing annoys me and that's the total opposite of my normal state of mind.
But I would get the pain checked out Bridget asap which should help calm you down somewhat…you little Hellraiser you!

Bye…[Read more]

Got it right there Min,bloods do have to be taken and tested first.
But surely there's nothing to stop them using this method at the Hospital.
It would certainly help me as my problem is not one of getting to the Hospital but that when I get there they have trouble finding a good Vein to go into.
This has always been a problem for me.
I had…[Read more]

Hi Bridget,had my injection of Velcade today but not totally without incident.
Went into a different Vein this time,one which has'nt yet been used.
Managed to extract blood without problem but could not get anything to go in so yet another Vein had to be used in my wrist to inject the Velcade.
This went in without any problem but I am quickly…[Read more]

Hi Jen,the Velcade is injected through a cannula and takes about 4,secs.
I've heard of it been injected just below the skin but certainly not experienced it or know anyone who has.
Like I've said the side effects are nominal compared to my first treatment which was VAD+Dex.
Just as John is finding with his wife my own veins are not too…[Read more]

Hi Ron and thank's for your opinion with regards to the NHS reform topic.
When discussing the NHS, difficult as it is I prefer to detatch it from Politics and most certainly money,then things become much clearer.
What sort of society are we Big or Small if we can't take care of the sick and disadvantaged?
Big Societies are fine at running bring…[Read more]

Hi Min,sounds like Revlimid is certainly not a very pleasant drug,so what's new with this disease?
My SCT lasted 2yrs 8mths and I still have another bag in cold storage at the good old RVI should they decide to use them.
Allo's can be tricky because of the risks of GVH but they do seem to be having more successes as long as the match is a good…[Read more]

Hi Min,Platelet count dropped from 138 to 130 during my 10 day rest.
I am now halfway into my second cycle.
Other bloods look to be stable so all seems ok.
They seem happy so who am I to complain?
Besides I feel ok so I'll settle for that.

Keith.

Hi Sylvia,Yes the salty taste went after 5,days and I've come to the conclusion that the Zometa is at the bottom of it.
I have my monthly shot of Zometa next Monday and I'll be looking to see if I get the same reaction again.
I am now onto my 2nd of 8,cycles of Velcade,having had the 2nd of 4 injections yesturday.
The next one is on Friday and…[Read more]

Hi Jo,oh shame on you for voting for them lol.
I suppose I contributed to the coalition in a smaller way by voting Lib-Dem
but then I've always been a Liberal and never ever liked the SDP,Alliance and now this awful meeting of minds with the Tories.
Our local Councillor who is a Lib-Dem and who I have always supported called last week and I let…[Read more]

Dear Bridget you are spot on but what I would say is we can still beat this and we have to believe we can.
Don't forget the details of this reform were not in the original Manifesto.
They are trying to dodge this by saying that it had to be re-written because of the coalition agreement but this won't wash.
A reform so far reaching and…[Read more]

Hello again, I have now resorted to answering my own posts LOL.
I put it down to the Dex……
But this issue really does get under my skin.
GP's in control of a £88m NHS budget don't make me laugh,it takes them all their time to diagnose a patient correctly.
Why would anyone think that they are better qualified to send a patient for the…[Read more]

Hi Debs,I start my second cycle of Velcade+Dex on Friday after 10,days rest.
I have my next shot of Zometa on 14th Feb so I'll be montoring the situation to see if that might be the problem.
Either way I'm determined to get to the bottom of it.
I'm also going to have a chat with the Nurse when I go on Friday.

Take care…Keith.