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 Jacqueline

So sorry that your Father has this rare development of myeloma.

I send you my love and prayers.

Mavis

Hi Gemma

Welcome from me too. It is veru generous of you to be willing to share your experiences, and your Dad's, after what have obviously been four difficult years.

One thing I would be interested in is, how was your Dad diagnosed? From all the complications your Dad suffered I presume he was at a late stage when he was diagnosed?

All…[Read more]

Hi Terry

Welcome from across the pond! I enjoy visiting the Myeloma Beacon site. It is interesting that there are differences between treatment regimes here and in US.

Do hope your smouldering state lasts for many years. I think that the Trial you are on will be very helpful for people who are diagnosed early.

All best wishes.

Mavis

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 Helen
No Sibs so will be going with best match that Prof Cook can find on the data base.
Best take note of what Mac the knife says and say no dog,sounds like Mac knows his own mind!
Enjoy the theatre
love Paul

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

I realise how gutted you must feel for not getting on the Trial. Yhere have been some good reports of Revlamid as a maintenance drug. I do hope that you are surprised at how well you do on this regime. Eventually, if you need it, maybe the Carfilzomid will be available all tested and dose adjusted.

Hope those PP levels remain very…[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"

Hi Helen
Sorry to here about the pneumonia but sounds like you dealing with it.Not turned superstious yet just taking one step at a time,decided just to crack on with things and trust in the medical team and Rachal and I will get on with life.Seems like i am due quite a few cycles of PAD before we can turn and look at SCT and…[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]

Thanks Kay and yes I do hope it helps to hear good news also I am sure more and More folks will be soon Joining me on the "Treatment Free" Regime.

Love Tom "Onwards and Upwards" xxxxx

Dia
i am so glad you can be positive about the drugs you it might not be so bad to have revlimid treatment I know a lady in my support group who has had revlimid for nearly four years on a low dose now tablets every other day and no steriods at the moment thalidomide and velcade were not any good for her she says that there have not really been…[Read more]

great news Eve

you have had such a struggle so it looks as if there is a bit of blue sky on the horizon I hope the tests prove to be good so that every thing is go for the SCT good luck and kind regards to Slim
Love Jo x

Hello Andy
welcome to this site you will find so much help and encouragement from so many people Myeloma uk is so good and the help line is a god send so many questions that need answers I hope they can sort out your back and give you sme relief from pain GOOD LUCK with your MM journey
Love Jo x

Hi Andy
A warm welcome to this warm Site and am sure as you have read a bit you will already know that we have some great folk on here.

Enjoy and ask and tell away, good luck with your road to remission

Tom "Onwards and Upwards"