Hi Everyone

Helen it is a world wide Trial but it is not in all area,s of uk. I know in the South East Dr Pocop fought to get these trials allocated here.If they were not here Slim would not be on them as the nearest place that had them was Kings in London.86 miles away and sick patients would not be able to manage it.But you have the same…[Read more]

Hi
Oncologist this is a blood cancer were is the heamotologist ??????

Hi Jeant
My name is Eve,My husband has had CTD plus Velcade them SCT,I do not know any back ground,so it is very hard to make any comments.
The question you should be asking yourself is how much do I want to know,???

The experts have to answer your questions
So you must decide what you are going to ask.
If they are treating your husband…[Read more]

Hi Jean
Here are some tips that might help you

The anxiety is fairly normal,kicks in over silly things,Dex moments they are convinced they are right,so just remind him when he has taken his dex.Ormake a chart out of tablets then tick when anxiety starts tick under it,and you will see a patten emerge.
Massage seemed to help Slim and some one…[Read more]

Hi David

People on the Myeloma trials X1.are randomised by a computer after SCT.for maintenance therapy or no treatment,so it,s the luck of the draw.Great fun it is not.Love Eve

hi Karen
If your GP did an urgent referral you should have been seen with in 10 days.
Get on to your GP tell him that you have not had appointment through.This is the procedure.

Karen your pains could be a number of things,but if you start feeling sick or are in sever pain,you could have problems,after what happened to my husband I would…[Read more]

Just a quick reply

Min i think if you are not in a hospital that is dedicated to Myeloma your chances go down,as i said he is on a good ward fit for purpose,but when he was in A&E they were going to put him on a general ward,I told them side ward or private otherwise i take him home,someone got chucked out to provide bed.
The fact is the…[Read more]

Hi Jean
Sorry I did not send you some best wishers,when hubby started chemo ,I know how much it was getting to you,its strange when the time comes,you just accept this is the way it,s going to be:-P My thoughts have been with you,just not had the time to post much with so much going on in our lives.

Same apply,s for any one else I have…[Read more]

Hello Tom and Keith
Well he is nearly out.collecting him at 10 pm.Turns out borderline,so pumped with antibiotics lots of fluid,now having bloods and platelets,Appointments have been made for Mondays and Wednesdays for the next 100 days to check bloods.

He must be getting better because he is grumpy left him watching football,
So lets hope I…[Read more]

Hi Andy
If it is any help Slim had Velcade, and found it easier than CDT.except more visits to the hospital.Twice a week and twice a day.Bloods then Velcade hrs later.
Velcade is having a remarkable effect on some people.
Good luck Eve

Hi Jen

Sorry you have joined us but you have come to the best place.

First thing tomorrow ring Ellen she will be able to give you a quick run down and send you booklets.
Stop looking for a cause and and start learning as much as you can about the treatment,you are now on a journey and it is a big learning curve.
Myeloma is Staged and there…[Read more]

Hi Alison

I am replying to your post under treatment,it shows in my e mails but not on the board.When I looked into your profile it is not showing a posting,so I have used your last posting to reply.(does that make sense!!!!!)

I think the system is having it,s own blips as 2 of the headings have not been showing on my computer screen. Love Eve.

Hi Eva

How is Sue getting on,although Slim is home we have spent 2 days going back and fourth to are local hospital,Slim has a problem with his platelets on Sunday they were 33 today down to 7,there is fine explanation under the Macmillan Site.Explaining some of the reasons why this does happen .

One explanation is having platelets from…[Read more]

Hi Gail
Eve again just realised I am loosing the plot called Howard,Henry,My excuse is i was up with Slim during the night and I have not caught up from all the travelling to the hospital.Sorry Eve

Hi Gail

Sorry to hear henry is having a hard time,may be a little time in a hospice is what he needs.They will be able to get his symptoms under control and help with his anxiety this is what they do and a very fine job.

You said your self Henry,was behaving so out of character,I think we look on hospices as a place to die but they do so…[Read more]

Hi Terry
I would agree with all your thoughts and what a beautiful picture of Scotland.
You have to keep positive,and enjoy every day.Eve

Hi Chris
A belated welcome to the site,one minute you have everyday living and in the next minute you have joined the club as a carer.

In my mind Myeloma is a dreadful thing,your life does get taken over by it,we do hear of some people who sail through treatment,and go on to live as normal as possible,but we all have the knowledge that one day…[Read more]

Hi Andy
I know how hard it is to remain positive,but it has started to go down,very slowly but it is in the right direction.When Slim was on Velcade it was awful waiting,he had to have 4 cycles before they would take a BMB,as bloods and light chains were considered un reliable as they were not showing a true reading,and on top of that the…[Read more]

Hi Everyone

Well he is home.Frail and bald with a good weight loss.so the time has come to build him up again,other wise buy a new set of cloths:-P

The journey down took 4 hours with a stop on the way,have to go back up on Thursday,and also have to go to Canterbury Hospital on Sunday and Wednesday.
He is busy writing his board out for all…[Read more]