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

Dear Gill,

I've been following your posts over the past few weeks and am very sad to read your beloved Stephen as past away,
Kevs been asking after you both and have just broke the news to him and can I say from both of us were thinking of you gill and please accept our condolences.

Thinking of you and your family love & hugs liz & kev…

Dear Gill

I am so so sorry to hear that Stephen has gone. My deepest sympathy and love goes to you and your family. I don't know any words that will comfort you at this terrible time. I have followed Stephen journey through this awful disease and was with you in his ups and downs. Gill I wish you strength and the love of your family to get you…[Read more]

Dear Tina

All best wishes for both SCT and radiotherepy. (I missed reading what this was for.)

Love and prayers.

Mavis x

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 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 Les,

I am also new to the forum. It is my husband who has myeloma and like you it was whirlwind at the start. Phil, my husband, started to have some back and rib pain and then suddenly (it seemed sudden although it was actually a month or two before the diagnosis) he was diagnosed with MM and on treatment. The treatment had to be stopped…[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]