Hi Carol
You are allowed a copy of all results,you do have to ask for them,I have most of Slims results,but some take a couple of weeks to get back as test are done in London,Leeds and Birmingham.
Any department in hospital can only give you result they deal with,computer does not allow them into anything not connected with there dept.
What…[Read more]

It is sad news,but not unexpected it was so nice of Gaye to think about us,and to make sure we new that she has passed away.
That is consideration beyond the grave,such a thoughtful woman,putting her house in order,she will be remembered with big smiles on this site:-)Eve

Hi Ivan
I can understand you not wanting to spend time off work,but at least you are being looked at,have you got a good boss?.
Do not let it get you down,You will find in time,that you become more accustomed to these little hiccups,best that it is dealt with early,
MRI scann will show any bone damage on spine,if you look at some of the other…[Read more]

Hi Russell
Welcome to a club nobody wants to be in!! but we are and it is not only informative,but some times funny,but you will have more fun,in the under fifties ,they are allowed to swear when you get angry ,older ones swear in spaces h-e-l-l.!!:-P
I see it was 4 am when you posted,we have all been there at that time,its when the demons come…[Read more]

Hi Dai
I do see were you are coming from,but we do need a spokesman or woman,who can explain the way we see things.Have you e mailed him.
If you are coming to the end of treatment,may be they can give you extra dex and have a dexy day LOL
Glad to see you being positive remember you are living with cancer not dying with it,living in Deal in…[Read more]

Hi Ivan
The service for cancer patients seem so different through out Uk'
I have at least 3 telephone numbers and 1 is 24 hr even holidays someone is on call.
When i have used it,I was told to go straight to A&E second time to call ambulance but both times a nurse from the unit met us,and i have been told in future to ring in,the reason for…[Read more]

Hi Cathy
I have to ask do you know what CDT is!!!! Eve

Hi Ivan
Have you been on the booze ,!!! gout only joking, never heard of it myself,
The pain must be bad for you to come on here and mention it!!!!

You must remember Ivan,that most gp do not know much about mm!!!
Have you not been given numbers to ring for any symptoms !!!!,If you feel so unsure please ring the number,??
Ring tomorrow!!!!…[Read more]

Hi Sarah
How are you holding up,I hope the family are keeping you busy,but still finding time for your quiet moments,The harvest must be gathered by now,Hoping you are drawing strength from every thing around you.
best Wishers Eve

Good for you Dai you have my vote love Eve

Hi Craig
Can I suggest you look under Treatment (up date on cycle 5 of Velcade )!!!
It might give you some in site to the problems,we have it is mainly the last 6 postings.
I was trying to find someone who,has Bence Jones kappa Light Chain,who like My husband had 6cycles of CTD who was considered to be going into remission.bloods good kappa…[Read more]

Hi Min
Have you ever considered the pay per hour.24×7=168 hours divide by that into 73 pound.answer peanuts and I am not a monkey
Min I am surprised you do not take something to help you,I will be honest with you,I would ring up and book an emergency appointment,do not take no for an answer,The reason I say this,is when your crying or shouting…[Read more]

Hi Cathy
My names Eve and I am a carer,6 months ago i was standing were you are now!!
I can only tell you this site is full of nice people,who will try to help and keep you positive as much as they can,they will be there for you in good times and bad.
Some people sail through this treatment go in to remission,and we all cheer
Some people do…[Read more]

Min
You are right,Slim made me Laugh the other day,he now worries something will happen to me,he said to me "you do realise if you get ill i will not be able to look after you" I found that very sweet. I promised him I would not get run over by a bus. LOL
Eve

Hi Bridget and Min
Just what i need,informed fact with a bit of humour,thought i might be upsetting Dai before his holiday and i would hate to do that,have been sitting thinking consultants just do not have the time to explain,we should all get these results without having to ask for them,and as you say Min an idiots guide to help us.
I do get a…[Read more]

Hi Dai
I am not being stupid am I???
If Kappa light chains results are correct!!! bloods are correct!!! why is there 80% Myeloma in marrow!!!
If I new the answer!!!

After the last results in may we had a telephone call to say bence jones kappa light chains were down,but Slim did not ask how far,since then I have been waiting on results,when…[Read more]

Hi Dai
This is getting interesting!!!! I know that the results come from birmingham university.I have some results.i was told that Kappa/lambda was the important one and they read as followed

22/2/11— 258.458
15/3/11— 239.611
05/4/11—- 121.425
31/5/11— 14.672
I have not yet been given June /July/August results I have asked…[Read more]

Hi Dai and Min
Slims on Meloma X1 trials,he has Kappa Light chain MM.After the first Stage of treatment,24 hr urine bottle and bloods every cycle,they did another bone marrow biopsy and to there surprise found his mm had increased in bone marrow.
I think what they normally assume is urine kappa light chains down,then you are in remission,not so…[Read more]

Hi Dai
if you can,i would like to ask you a few questions or if anybody looking at this post who could answer them,
Its about the Velcade,Slims on 2.3 at the moment 2 shots one Tuesday and one Friday, 9 oclock bloods then although told to come back at 1 oclock did not get jab till 3.30 .left home at 8 got back at 4.30. (screaminggggg) poor dog…[Read more]