Hi Dave you have had a rough time till now but I hope things will get a bit easier now you are on treatment Like you I had surgical reconstruction of my spine after myeloma destroyed 3 and a half vertebrae, luckily I did suffer any paralysis ,much to the doctors amazement! I am so grateful they could do the surgery otherwise I dread to think what…[Read more]

Hey Eve
Dont let the B U G G E R S Grind you down you both have gone through to Much to even worry about those that give you the shall we say " The Silent Treatment" its a sad indication to how our Dr's and Nurses (not all i hasten to add, if you are reading this Dr Jalihal or Nurses Helen (x2) Annie and Shaz and not forgetting my Little Tea Girl…[Read more]

Hi Dave
Tom said it you have been through the wars,and with the determination to walk again,I would say you are doing great,its a big thing,my hubby was lucky he had no compression of the spine,but a fair amount of bone damage.
if you have a look at under fifties there is someone on there who has eye problems ,I think that,s how Myeloma was…[Read more]

Hi Helen,
I felt the same way as you when Slim was in hospital and thought wait until he came home,but I was so busy,bathing and looking after him day and night,the complaint never got done,and my verbal complaint never was dealt with,he will never go on that particular ward again,and now I stand my ground I take the view I know when he is…[Read more]

Hi Dave

Well a warm welcome to this site am sure you will get a warmer welcome on here than you seem to be getting from the professionals 🙁

My you have been through the wars and done Bloomin well with it 😀 I can see this MM thing has got its hands full with you giving it a great fight8-)

As for the SCT after reading your past…[Read more]

Hi Benede, Passed I think? not sure what you were testing??

Tom x

Hi Gill
Well at least you are getting there,I know you said there was a good local doctor,who new about Myeloma,so that must be helpful if any thing goes wrong!!
How will travelling affect being on RCD????

We did have a week in Canterbury site as we had so many hospital appointments between us,it was cheaper and easier than travelling for…[Read more]

Thanks again for all your wishers,yes I did over do it a teeny bit!!!,i had Slims share as he does not enjoy a drink!!!.
He over did it by not resting enough,found all this energy,and paid the price on Sunday after the walk,has been sleeping most of the day and night,making up for not sleeping well on Velcade.
2 week of 5 cycle this week.
On…[Read more]

Hi Gill
RCD is the other side of myeloma X1 trials,Slim got CDT side,but we wanted the RCD,if that makes sense !!!
This is the one JET had and had such good results.As you know people are affected in different ways,but they can alter the dose,It looks if it will become one of the front line drugs for MYeloma but at the moment still a trial…[Read more]

Hi Dai thanks for the tip working from the outside in sounds a good idea I will try that If Susannah or Tina reads this perhaps you can help me with some info I have developed an angry red rash on my feet and lower legs , ending just below the knees. Did Patrick ever have this ? Has Michael had anything similiar Susannah? How is Michael? I am…[Read more]

Short and sweet in a NUTSHELL —- ELL next love Bridget x

Hi Min

A Warm Welcome Home 😀

I am very pleased you slept well both at nite and by the pool in the sunshine, its Good to chat to Peter and am sure we dont know of any Man that dare to answer back ha ha.

I know your guardian Angels as well as Peter are still looking down on you.

Love and Hugs (()))

Tom xxx

Just bumping this up for newcomers who may not be aware of the under 50s site Bridget

Hi Roz
You are coming up to your own 1 year soon!!,so my thoughts are with you,I have to confess when people say it gets easier!! I have my doubts the loss just becomes more acceptable,but it,s always there,but in time the good memories remain.
I hope you have planned to do something,even if it just opening a bottle of wine and enjoying that…[Read more]

Hi Sarah,

Its heartwarming to hear that Henry seems to be responding well to his CDT treatment… it worked well for me (also Kappa Light Chain – 'Bence Jones' Myeloma).

I also had a couple of lesions on my head but CDT saw them off, leaving two small craters that my wife Janet takes pleasure in poking (so do I… like the equivalent of…[Read more]

Hi Everybody
I am on a bit of a high at the moment,slept well for the first time in ages.mind you G&T wine an d baileys helped.LOL but feel wonderful this morning and its such a lovely day the sun shining,and everyone seem to be out walking this morning.8-)
Min you were right about not giving up,and with out your support,i think i might…[Read more]

Hi Bridget,

I am glad that you are settled on a treatment and I do hope that the side-effects diminish as you get into the flow.

Good luck with the injections, remember to swap sides… mine seem to be a semi-permanent feature and I found I was developing small lumps, so I am more careful how I 'map' my injections. I swap sides, starting as…[Read more]

Hi Dad and Abi
Welcome to the site,It is no use telling you not to worry because your world has just been invaded by Myeloma,and your thinking this cannot be happening to your dad.
There is so much to take in,so just try to take it one day at a time,I found it useful to ask friends and relatives to stop phoning all the time,because I was just…[Read more]

Hi Penny,

Can I suggest that you introduce yourself in the newcomers section – tell us a bit about your background etc… I am sure that there are many here who would like to say hello to you in your own space. 🙂

Dai.

Hello Abi and your Dad

A warm welcome to this warm band of MM'ers its a great site as you probably know by now 😀

Your first session with your Dad's Consultant will be scary and might get too much info at the start but fortunatly it will all fall into place as the months flow along.

Good Luck to your Dad on his forthcomming road to…[Read more]