Hi lovely Bridget,

Like Tom I would love to be near you right now to give you a hug because of the news being so bleak… but we, and especially you, can still be hopeful of some success with a previous treatment… CDT or something similar. or perhaps they might offer you a trial.. pomolamide (sp) or something of that ilk.

I assume that the…[Read more]

Hello Terry and welcome
glad you found us its good to hear what goes on over the pond I read Dr James Berensons reports you seem much further ahead with treament than us
you are so lucky to have been diagnosed before much damage has been done my kidneys have been badly damaged good luck with holding of the progression of MM
Kind regards Jox

Hi Amelie

Sorry to read that his SCT only lasted for a short time, and hope that his 2nd one gives him far far longer, please give him my regards

Tom "Onwards and Upwards" xx

And a warm welcome from Me Terry.

I just wanted to wish you a good journey with your MM and am sure you can keep us all up to date with new treatment .

Keep strong

Tom "Onwards and Upwards"

Aww Bridget

I have read and re-read your last post I have sat her thinking what I can say, and the only thing that keeps popping into my head is (and forgive me ladies and gents) "Bastard MM", sorry bout the cuss word on your post Bridget :-S

But I am with the rest that have already posted and those that will follow my post is to say You…[Read more]

Hi Bridget

Just reading you news,and wondering what to say,sorry does not seem fitting, it is strange the way,over time with this MM it becomes another hurdle to get over,and now you are being told there are no more hurdles,well Bridget if you are prepared to jump the hurdles,they should at least be prepared to find some.
I like most people on…[Read more]

Well I had clinic today and it wasnt a pleasant experience to say the least Basically I have had all the myeloma treatments over the last five years and none has worked for any significant time The team at UCH have been looking for a trial but that is no longer an option due to the fact I am a non- secretor Its possible they may retry…[Read more]

Hi Amelie sorry to hear John didnt get a longer remission but quite a few people have said they found their second sct easier than the first one so try not to worry too much . I dont know why Thalidomide was chosen its something that his doctors would be able to tell you. I think you may be thinking of ice pops to suck whilst he is having his…[Read more]

Hi Terry welcome glad you found us. You were lucky they spotted your myeloma early before any damage was done Your doctors sound impressive and very cutting edge , you will be able to access new treatments as well This site is brilliant you wont find a more supportive group of people anywhere and its not all gloom and doom either we share laughs…[Read more]

Hi Roz

Did I Post a photo of my breakie? I cant find it on Facebook??
Am doing great Roz and I hope your doing Ok also

Love Tom xxx

Hi Gem

First My condolances for the sad loss of your Dad and next Many thanks for your offer and support for all of us who have or care for those MM sufferers.

Love Tom "Onwards and Upwards" xx

Hi Jacqueline

So Sorry you had to join the site but a warm welcome to you and your Dad.

Ellen is correct well about me anyway I dont know anything nor have I read anything about MM in the brain I just wanted to welcome you to the site and wish your dad a Good Journy with his MM.

Tom "Onwards and upwards"

Hi Gemma,

I would like to extend a very warm welcome (usually our welcomes are guarded with a 'sorry you have to be here' message. But although your experiences are full and empathetic in nature I still understand that were ultimately achieved through the care and eventual loss of your Dad… but here you are and, as said, you are more than…[Read more]

Hi James

Good to see you have got through SCT and now,working on you general health,Slim my husband has not yet had SCT but after a few hiccups with treatment,found himself unable to walk with out sticks then only a short distance.
He started walking short distances often with me pushing a wheelchair just in case, went to one stick,then…[Read more]

Hi Dai

When I read you had missed out on trials,I put off replying as it just did not seem enough to say how sorry I felt for you,it just seemed so unfair,but hey! some times life is not fair,and by the sound of it you have picked yourself up and hey ho! on to the next treatment.
You cannot keep a good man down:-)

At least with the night…[Read more]

Hi Dai

Well its so good so far 😀 and as for the general fatigue.. well I get that and as you know am on Nowt, so am putting it down to "Old Age" well for me that is Lol.

Keep it all going we are all with you 😎

Tom "Onwards and Upwards"

Thanks Phil,

Yes, I have to back in two weeks for blood tests to watch my white cell count and my neutrofils. My specialist nurse will check the results and recommend any alterations… obviously I am hoping to stay on the highest dose possible if I can.

What else to you take with the Rev? Is the trial your frontline treatment or further…[Read more]

Hi all,

Thank you very much for your supportive replies.:-)

I have to take the Revlimid tablets one per night for three weeks, folowed by a rest week… then repeat, hopefully for many, many cycles.

The dex (20 tablet, once per week continuously – they only seem to do one size) I took yesterday morning making Tuesdays 'dexdays'.:-S…[Read more]

Hi Andy
Again welcome to the site
My name is Eve and I am a carer to my husband,I use to be a 3am person,but things have got a lot better,and my husband took my advice about seeing the doctor and taking an extra pill,to try and get some normality in are life.
He now takes a light ant depression tablet which makes his body relax so sleeps all…[Read more]

Hi penny how did it go yesterday. Any date for SCT. I was also a lucky one. They kept telling me I was boring 🙂 no infection, one bout of diarrhoea, one bout of sickness and home in two weeks. I was also quite fit when I went in and 46 years old. I think it helps. Good luck and keep in touch kay x