Hi Benze
As for me I am/was treated in Scuntorpe and Hull but am a Scot from Holytown near Motherwell, but good luck 😎

Tom "Onwards and Upwards"

Hi Helen
Thank you for more information,it all helps,I agree with you,we know it,s a trial,but cannot see it being with drawn if its working.

As you know Slim has already used Thalidomide and Velcade,and in general Is not in the best of health,with lungs and kidneys.So my way of thinking if any drug keeps Myeloma away it must be a good…[Read more]

Hi Dai
I see were you are coming from Dai,and yes randomisation is the last part of the trial,which has been going on for some time,that is one of the reasons they have now introduced Zolinza which has been used for main stream chemo.

As you know information from America is saying a little and often to kill Protein,this is what Zolinza…[Read more]

Hi Everyone
Well Slim has been randomised for no treatment,which in some ways leaves me wanting to ask questions.???????

As Revlimid is now been accepted by the powers that be as a treatment.If Slim came off the trials could he have it as a maintenance treatment????

Is any one on here not on Trials but on Maintenance…[Read more]

Hi Gill

Well you are on the start of another journey,this is the time to be a bit selfish,this is your husband you do exactly what you want,and arrange a funeral that will please you.

my daughter had a humanist funeral for Matty,at Bobbins,I have to say the woman who did the celebration of Matty,s life was excellent,she had phone calls after…[Read more]

Now Look what you did Gill I went on You Tube to listen to "unforgettable" and I admite I have tears.

Gill I admire you Both (yep Stephen) am sure it was hard near the end but you have both faced it with immense strenth/courage and Love, and for that I and many more folk on here and that know you both will be eternally Grateful.

I also am…[Read more]

Hi Vicki and colin

Well done on getting the funding but its a shame it has to be fought for >:-(

The other dose of cyclophosmahide if it is needed then its a case of OK throw it at me I and everyone else that gets near me will suffer for a few days :-S so let them all Be warned 😎

Tell Colin to stay Posative as its the only way to…[Read more]

Hi Vikki and Colin so glad to hear that Colin is getting plexifor (!!) I am following your journey closely as Frank is a couple of months behind Colin. Do keep us posted every step (if you are up to it) it is so helpful to read of other peoples experiences

Love, best wishes and all the luck in the world
Love Jean x

Dear Gill

Like everyone else I am so sorry to hear of Stephen's passing after such a brave battle.

I just hope you can take some real comfort in the fact that he is now beyond all the pain and stress. No one can take away the memories that your great love and support for each other have given you. Death never has the last word.

You and…[Read more]

Hi to all of you,

I knew I could rely on you all to give me some really good suggestions to deal with this wretched condition! I will especially take the movicol advice on board and have started taking Albran each morning. At least i haven't got bunged up again yet!!!

I particularly appreciated the comment by Rosie and Paul about the…[Read more]

Hi Tina

Wow you have got it all down to a T and am sure it will all work out keep strong and fit(ish)

Love and Hugs

Tom "Onwards and Upwards" xx

Hi Les

Thats the way to rock 😎 wishing you luck for getting off the velcade and kidneys up and running smooth.

Tom "Onwards and upwards"

Hi Mavis

I do not think you can be to relaxed about constipation,as it will create all sought of problems.
Slim got to the position needing ,Movicol Laculose plus Senna tablets,even now I nag him about his bowels,Movicol Twice a day will help your bowels to work at moving the contents,rather than just getting rid of it,so the bowel will work…[Read more]

hi Cathy
Have you found some peace of mind with the knowledge you have gained????
It is hard Cathy,and upsetting to watch some one you care about going through this,but at the end of the day,is there much choice,you just have to not look to far ahead and think we will get through this,you keep asking questions.

I know there are people on here…[Read more]

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]

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]

Hi Gill
So sorry to hear about Stephens passing,if you want to talk we are all here for you.
Big hug PaulXX

Hi Mavis
I have had similar "experiences" when in hospital (its the food and less mobility),when discharged I tend to eat prunes in my cereal with some all bran,fresh coffee in a morning,lots of fresh green vegetables and have tried the senna capsules.Always works after a few days.
I agree with Rose about the pain killers check with the…[Read more]