Hi Andy
It is madding when you travel a long way,only to find it is a waste of time, lets hope it improves.
Andy since there is a chance Slim might go on maintenance for Zamiza,i started to read up on it with the Myeloma Beacon some interesting trials,one being Velcade and Zamiza,might be worth looking at as Zamiza is a prohibiter, that breaks…[Read more]

Dearest Jill

I am so sorry, I was thinking of you both all day today, I cannot pray. Thank goodness he was not in pain at the end. I wish I knew what to say to help you, all I can do is cry for you and your family and his mum, I too had to tell Gordon's 85 and 89 year old parents, it is not right.

My deepest sympathy and love

Sarah

Hi Gill

So So sorry that Stephen has died,I know how hard it is to let go,to stop that clock and wish for time to go backward,but it does not Gill,this is the time for your tears,I hope your daughter and Stephens can not only help you practically but are with you,to give you some comfort.

It must have been awful for you,to Stephen this way,I…[Read more]

Hi Helen and Ali

Have found out some info on the Myeloma beacon,but not for maintenance,so asked at the hospital today,

Seems gathering up the people to sign for trials,once they have enough they will be randomised ,its new to trials,it breaks down protein in the cells,side effects and more information at a later date.
So we wait and see.Love Eve

Dear Gill
I am so sorry i can add nothing to what the Min and Tina and Dia have posted. I do feel for you Gill, Gordon,s end came so fast we did not begin to sort things out and he went in on himself for the last 24 hours and would not communicate all of you reading this Please talk to each other lots and lots.

My thoughts are with you…[Read more]

Hi David
You must be over the moon with the news,it should give you some peace of mind to know there is no hidden pockets of Myeloma lurking in your skeleton,

So I hope that coffin is locked away for lots of years,i had a feeling you might be rushing to finish it,LOL.David did you know you can get lovely pictures embossed on them now,you can…[Read more]

Hi Cathy
Did Ivan have an problems with Kidneys before SCT???How much chemo did they give him,they try to get it in and out of the body very fast with lots of fluids before during and after to minimize damage to the kidneys.
It does sound if he is one of the people,that some times have kidney problems,with the treatment,and it looks if this is…[Read more]

Hi Chris
Just coming on to wish you good luck,hope they manage a good harvest,so they have lots to put back in.
To answer you question Ali Slim is a good 3 months post SCT,his hair showed no signs of coming back until 3 weeks ago,it,s come back very dark and is a bit like a babies first born hair very soft.Eve

Hi Everyone,

This is what I have never understood,people come on here desperate for some knowledge,then b—er me,they do not even bother to reply,is it that they have only concern for them!!!!!! or are they some sick person who gets a kick from knowing these people are fighting for there lives.

Its a sad day when people need to troll this…[Read more]

Hi Keith
Thanks for that info:-)

I cannot get any protein in Slim,gone off all meats fish,only thing is eggs,so egg and bacon,ham egg and chips lives off them given up trying good food,My weight has gone up because I cannot keep eating different food,if I eat Slim eats.:'-(

At the moment very p—-d off,thought the cruise might help,he gets…[Read more]

Hi Keith
You have been through the wars,while Slim and I have been enjoying ourselves,correct that I enjoyed myself.

I am interested why some people like you and Slim loose so much weight with the Dex but other people put on weight,has anybody come up with a good answer.Slim now weighs 63 k,skin and bones no bum left,try as much as I can but…[Read more]

Dai
That was lovely,I find a great inner peace in poems,not very good at lyrics,but do enjoy reading them.Love Eve

Hi Les
Nice to hear from you and you have come to the right place,this lot on here will soon cheer you up.

My advice is take one day at a time,what seems awful at this moment,will not seem so bad in the future,but you are going to feel worse before you feel better.

First have you applied for a blue badge,or any money like attendance…[Read more]

Gill
There never will be enough time,life and death goes on,but when you are in your situation,you just want the world to stop you will cope with Stephens death,Be brave save those tears for after.
I thought you might like this.

If there is a tomorrow when we are not together
There is something you must always remember
You are braver than…[Read more]

Hi Jacqui
I would like to make a comment about sugar in general concerning MM.
I know Slim has never taken sweeteners but enjoys white sugar in his tea,which I consider is bad.
During his treatment he developed a taste for puddings after dinner,normally he would not dream of eating anything sweet,he would drink wine with all its sugar.Now he…[Read more]

Hi,
My name is Eve I am a carer.Welcome to the site.
You ask questions,and expect answers with very little information for anyone to give an answer.

From what you are saying the person concerned had severe bone damage which in it,s self brings it,s own problems,as you have an aunt who had Myeloma and is still alive,she should be your first…[Read more]

Hi Jennifer

I am sorry you have not had more answers to your post I think it maybe because you have asked questions that us laymen cannot answer. I am sure that the specialist team will be able to help you regarding all your questions and you will certainly get support from the motly crew (me included) that post on here.

Kind regards Gill