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 Mavis

Well I for another one know how you feel with [u][b]"That" [/b][/u]problem am sorry to say, but I was given "Strong Codanthramer" 10 mls at night as and when needed it worked wonders 😀 till I thought I got through the [u][b]"That"[/b][/u] bit but it was still with me. all sorted now though might even be a little bit loos since my…[Read more]

Oh Gill

I am so sorry to read about your beloved Stephen has Passed away I honestly wish i was with you to give you that great big Hug that am sure you want and need right now, but am afraid it can only be a Cyber Hug (((HUG)) sent to you and of course to Stephen.

I watched with a smile on my face the way you two have coped with all that the…[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

Hi Cathy

Just a quick message to let you know that we are thinking of you both and just hoping that Ivan "turns the corner" soon. As everyone keep saying we really all different and my husband remember well the panick setting in as day 28 in isolation, feeling rotten and having constant infections conditions with absolutely no improvement in…[Read more]

Hi Kieth

sorry you have been so ill the steriods had the reverse effect on me i put on 2 stone I was on 120 mgs a week I am glad sugers are back to normal i hoped they would do
in america they use prednisolone steriod if people cannot take dex its much gentler not as agressive as DEX I have it for my kidneys at the moment and dont get many…[Read more]

Hello Les

I understand your shock same thing happened to me my creatinine was 597
i was being prepared for dialisys but my kidney consultant gave me a chance put me on a high dose of sodium bicarb and along with the high dose of steriod my kidneys improved a bit he waited to see what would happen so i have just avoided for the time being the…[Read more]

HI Joanne

Not a problem, and i wish your Dad luck with the harvest on Monday.

Tom "Onwards and Upwards" xx

Hi Craig and Etta

You both kn ow I can only speak about myself in this 🙂 but yes I had sickness for ages after never brought anything up cept the Bile and wind, was on anti sick tabs for ages even my Consultant wondered why I still needed them :-S but hey I did and got them 😎

Keep going one day Etta will wake up and that Corner will…[Read more]

Hi Cathy,

Ivan seems to have drawn a very short straw with regards to 'things that can go wrong' during a SCT. Ali's advice to grab hold of the consultant is sound and practical. 😐

In your shoes I would want to know what the medics expect to happen, in what order… you need to know how the different side-effects and procedures are…[Read more]

My Dear Gill,

I can hear your heart breaking from here.

Stephen is in the right place but it sounds as if he still has some sort of mobility and you haven't said if the Magician & Co are going to continue with Stephen's preferred treatment. Will Stephen's ability to communicate be helped by that treatment? Have your wonderful medics…[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

Good Luck for today/tomorrow Chris I hope you do well

Tom "Onwards and Upwards"

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 Joanne

Sorry I seem to have missed this post? so a late welcome to the forum.

As the great members here have said its a rolercoaster ride getting remission with this MM but it is doable as I like many can confirm.
Just a run down on mine (am now 57) found out in Jan 09 I had MM, had 5 courses of CDT then harvest leading up to Stem…[Read more]

My Dear Gill and Stephen

I am so sorry to read about you Stephen and your MM grabing you so hard and so Fast, Stephen and Gill my thoughts are with you both at this moment (and have been as am sure you know for a long while) Stay Strong Gill I like most wish we could take the pain away for you and heal Stephen but am afraid we cant.

One…[Read more]