Hi Annette its good to hear from you and no you were not at all boring Great results from your treatment plan and it certainly sounds as if its made a big improvement in your life I think the fatigue is hard to avoid , it either comes with mm or with the drugs we take , I know I have become a champion cat napper Heres to you staying well for many…[Read more]

Hi Sue thats wonderful to hear you are still in remission 2.5 years on and for many more years yet hopefully. I know what you mean about living with the uncertainty of myeloma but I suppose all we can do is live each day to the full and enjoy every moment As you say never give up Heres to staying well love Bridget x

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 Susan thankyou for your kind words.I have stopped ranting now, and feel much better for it, and waiting for my clinic appointment to know what the plan of action is How are you feeling? Are you still in remission? love Bridgetx

Hi Cathy welcome to our merry band of people from all walks of life! I am the pateint and my partner is Jeff, I dont like using the word carer, we are in this myeloma journey together There are so many lovely people on here who can help when you need it and the helpline is brilliant too. I was diagnosed 5 years ago and I can remember the fear and…[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 Eve I may be able to answer part of your query Blood tests give overall readings but bone marrow can form little pockets or cumps of myeloma. If the sample is taken slightly to the left or right for instance the result could be much lower In the beginning my paraprotein readings seemed to accurately reflect what was going on butafter a short…[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]

Min
Why an earth are you running yourself down,i know how tired and shattered you must feel and how worried you are,but to think you are not a good carer against the professionals!!!!!!,
You are for getting you are married to an ex service man who,s form of defence is to attack ,and the sad thing about this in a few months he will not remember a…[Read more]

Thankyou so much Debs and Lorraine it never ceases to amaze me just how lovely you all are When this bloody illness throws c**p at us a message on here can make so much difference lots of love Bridget x

Hi Min as awful as it is for Peter to be away from home , and you I am sure you are right about him needing to be there I do understand how he feels about not being in control and its always worse when you are feeling c**p Hopefully this depression will allow him to be more honest with the professionals and let him build a better relationship with…[Read more]

Haha Mavis no hard stuff for me I am afraid , today I just decided life is too short to be gloomy all the time and have been in a very silly mood all day! I hope you have had a good day too love Bridgetx

Hi CN

Makes trying to survive another ten years worthwhile!!!!

Mavis

Hi Min

I dfo sympathise with you and peter and I'm sorry that he has ended up back in hospital – just what he didn't want.

When I had a double hip operation some years ago (not MM related) I felt in the same position as Peter – being kept in hospital against my will. My husband and I were at logger heads about it. The thing that helped in…[Read more]

Bridget

So glad you are up to cracking jokes!!!

Are you sure you aren't hitting the hard stuff?!!

Mavis

And Gaye … thinking of you – "to bra, or not to bra?!!!"

Much love to you both.

Mavis x