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 Ali
I had lots of yoghurt and I still took the anti sickness tablets for ages, has she had lansoprazole? And gaviscon, I took them all together! And lots of snacks between meals. It's worth trying everything again.
Good luck
Love Helen

Hi Eve
Revlimid is only licensed to be used as 3 rd line treatment, ie thalidomide and velcade have each been tried and failed then revlimid is next. Revlimid is only available in use as first line treatment as part of the myeloma xi trial. It is also only available as maintenance in the trial, as is zolinza.
There was a French trial recently…[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]

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
I am so sorry to hear about Stephen, you will miss him so much
Love Helen

Hi Andy
It is a blow when that happens, I find it very disconcerting when it happens to me, you come away thinking no one really cares or has any insight into how you really feel. Next time you come up ring his secretary to see if he's going to be there and if not maybe ask for it to be rearranged.
My chest infection is way worse and am now on…[Read more]

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 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 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]

Hi Andy
Glad you had a good holiday, how did you get on today?
Love Helen

Hi Eve
I think they have added this to the options for the myeloma xi trial so that there are 3 routes now after sct on the intensive arm, ie no maintenance, revlimid only, or revlimid and vorinostat, (zolinza) but I'm not Absolutely sure. I think Ali might know more about this as she mentioned it sometime back as a potential scheme that her mum…[Read more]

Hi Keith
Glad you are feeling a bit better, I never put any weight on on the dex either, and lost quite a lot after transplant – it still hasn't gone on again either.
Love Helen

Hi Craig
I'm with Tom here, I took the anti sickness tablets twice a day for about the first month, more often sometimes when i felt so shocking, then I took them on and off for the next few months. Keep going with the antivirals -very important so you don't get shingles, the cotrimoxazole is an antibiotic, so keep going with that too. I had a…[Read more]