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 to treat patients at the point of need.
We still have a NATIONAL health service the last time I looked but for how long that's the worry?
Hope Peter gets well soon.
Take care both of you…Keith.
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 it was excellent as I'm sure they all are.
I'm up for a second transplant sometime this year once the Velcade has done it's stuff.
Good luck…Keith.
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 I'll certainly stick with it as long as they want me to.
My Platelet count has dropped from 180 at the start to 108 at present.
I would think that they will be below 100 at the next visit on Friday.
All other bloods seem fairly normal.
I really do HATE this disease for interupting my life just when things were on an even keel during the 2,yrs of drug free remission.
Call me ungrateful but I just need to sound off now and again otherwise I would go bloody mad.
I'm only human afterall.
Cheers Phil and hang on in there,you and Gaye were my original insperation.
Keith.
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 for now…Keith x
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 GCSF injections this way in preparation for my first SCT and all of them were at my local Hospital but minus all the holes and bruising.
I would'nt care a cyclops with a glass eye could spot my Veins so the problem must be more to do with the quality of them?
Keith.
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 running out of places to inject into.
Fortunately the Veins usually heal within a week and just in time for the next injection.
I've been told my Veins are very difficult to find but I think alot has to do with who is doing the looking?
I have skinny arms and my Veins stand out like organ stops yet they still have trouble finding a good one that works.
This is the one thing that annoys me most,being stuck with needles.
As for using Lines…been there done that ect, ect.
I even had problems with that procedure during my last treatment and ended up having to go back to using Cannula's.
Still if my Veins hold up then everything is ok and I'll get through this new phase of my journey.
Oh by the way I mentioned to the Nurse about having the injections Subcutaneously and she did know about the procedure but that was as far as it went.
Maybe it's something I will follow up if there are anymore glitches during my next visit on Monday.
Take care Bridget and keep in contact…Keith.
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 obvious.
With my first treatment I had a Hickman line fitted for the duration and even that started to play up by getting blocked so they still had to resort to needles.
Keith.
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 and buy sales or church fetes but once they attempt to get in the way of BIG BUISNESS then they get crushed.
Big Buisness have the Money which means they also have the power and the ability to influence people and Government's alike.
It's the way of the world,always has been and always will be.
I have no use for politicians of any persuasion but regard myself as a humanitarian.
I like to help others when and where I can and Don't need Government Ministers to patronise me.
The British have always by nature been community spirited,now it's time the Politicans took a leaf out of our book and do what they were elected to do and Govern the whole of the country in a fair and even handed way.
If they can't manage it they should move aside and give REAL power to the people.
Keith.
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 one.
Whatever they decide to do Min I hope Peter starts to feel better soon as there's nothing worse that feeling sick all of the time.
You both deserve better.
Best of health to you both soon.
Keith.
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 I complete the second cycle next Monday.
They can usually tell after 4,cycles if the drug is working so here's hoping.
At the very least the pain has gone and after 8,weeks of it that's a massive bonus.
The side effects are nominal with the usual waves of fatigue.
Bloods are holding up although Platelets have gone from 180-130 in 4,weeks
which is to be expected.
I've been told that as long as they are above 75 then there's no need for transfusions or a reduction in the dose of Velcade.
Hope yours goes well for you too Sylvia and don't forget to keep us posted.
Keith xx
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 her know how disapointed I was with what's going in the the Coalition Government and the part they are playing in it.
Yes Labour don't have much to shout about either but for me this issue goes way beyond Party politics and for me puts this Tory idea of a BIG SOCIETY to the test.
The people have spoken and we are saying we are not happy with what's being
proposed for the NHS,so the question is how important is this BIG SOCIETY and is the Government going to take us seriously?
Or is organising local bring and buy sales and church fetes the extent of our powers.
We elect Governments and pay taxes for them to Govern on our behalf and we must make sure they do their duty for the good of the nation and that means listening to our opinions and needs,and this applies to all Governments whatever their political persuasion.
Keith.
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 destructive as this will never become law without the full backing of the medical profession and the people at large,and they don't and never will have it.
We must hang on to this belief and fight them all of the way.
The Teesside community are certainly ready for a fight and other areas should realise that should the Government get it's way this sort of back door privatisation will be visiting you all very soon.
Take Care Bridget…Keith.
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 right tests and to bypass the expertise of a Consultant?
I was mis-dignosed for 18,months and this is a common occurrance.
I know some GP's are good at what they do but even they are not all in favour of this pie hash scheme.
Unfortunately my local MP is a Conservative and tows the party line being one of the new breed of Cameronians at age 26 so waste of time lobbying him.
I'm ploughing a lone furrow where I live in Tory land But I like a fight and will never surrender.
I would plead with you all to write or Email Andrew Lansley if you agree with me that these reforms stink to high heaven and should be challenged on all fronts.
It's still all to play for.
Rant over…Keith.
