Hi Pat
AL is similar,it is rarer,I think 600 cases a year,last time I looked and only one hospital Royal Free,there are a few people on here with both Amyloyds plus MM,they usually pop up in related conditions.

It is not knowing that causes sleepless nights,so once you do know you feel you have something to fight,Velcade works for MM.

Its…[Read more]

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]

Dear Judy

So sorry you are having such a hard time although it is very understandable given the circumstances. You are entittled to answers. I do hope someone is helping you to get them. Have you put a complaint in? The Hospital's PALs service should be able to help you if you haven't got anyone else on side.

Have you family to share…[Read more]

Hello Gail
I am so sorry to hear of Howards passing,your not alone we are all here for you…If you need to talk just log on and tell us,someone will respond!
You look after yourself
xxxxPaul

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 Gail

Can't really imagine what you are going through, but wanted to send my condololences. Glad others are able to send practical advice. We are all friends here.

Love.

Mavis x

Hi Dai

Sorry you lost your posts. How frustrating. I do hope you can find the energy to post them again because I've been hoping to hear good news from you!!

Best wishes.

Mavis x

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]

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]