Hi Cathy,
Well Ivan is on his way,it amazing how quickly they recover from what seemed at the time,as will he recover.

Give it time Cathy he will get there,you just make sure you get some rest,when he comes out,it will get harder for you,as cleanliness,washing and cooking will take up you day,so try to have a rest now,if anyone offers help…[Read more]

Hi Judy
It is not unusual to feel this way,after a few months any one will tell you it is part of the grieving process.You want answers and are entitled to ask questions.

I have always made a point of keeping records of blood results as they can tell you a lot about a persons condition.

When you saw the consultant on the Tuesday who told…[Read more]

Hi Mari

How are things going???? You must be back at school now.Eve

Hi
I just wish they would do one south of London,just to far to travel, bad enough having to go to Kings,every few months.So unless it comes my way will not be going to info day. Love Eve

Hi Everyone

If it is any help to anyone, I tend to look at peoples profiles before I reply:-P

If some one is not prepared to identify themselves,it is questionable,some of the posting is more than questionable Dai,its sick.Eve

Hi Sarah

This is just to say hello,sorry I cannot be much use to you,Slim never did smouldering,went straight in with AKF plus hypo-calcaemia,.

Lots of people at all different ages with SMM ,so I am sure you will get some reply,s you could try the under fifty,s lot,you have to ask to join.

Hope you stay smouldering for years and years. Eve

Thanks Tom

Time will tell,Slims got a chest infection at the moment,and being sick a lot,every time I think he is picking up,down he goes.At least he is holding his own at the moment

I keep telling him about you,how good you are doing,all that vodka you drink,2 years on and going strong,he,s jealous Tom lol.love Eve

Hi Eva

Thank you for the information,it all helps,we are not private,if we were I think I could argue a good case for having some form of maintenance,When Slim was going through his treatment with CDT,everyone thought he was on his way to remission,as his blood results have always been good,and his kappa light chains were well on there way…[Read more]

Hi Gill

Matty had a long service,but I do remember some were in the middle,she said anyone who had there own believes and thoughts,were welcome to say a pray or have a few minutes silent to pray in what ever they believed in.!!!!

It is very sad,that people cannot gather to say good bye to a person ,in there own way,Gill you do not even have…[Read more]

Hi Benz

Just to say welcome.

Min you should know Tom by now give him a Vodka and ask him to do any impersonation ,he could even sound like me,Ore rite there kid,us scoucers never went to school.

Good job we can laugh,in the position we find ourselves in.Eve

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]

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