[ElizellenParticipant]

Welcome to the group no-one wanted to join, Peter!

As the others have said it is good to hear from someone who has lived with this pesky disease for many years and is still fighting the good fight, as it gives us all something to look forward to.

Long may your remission continue!! 🙂

Elizabeth
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[petesilverParticipant]

Hello everyone who replied to my message I thank you very much for all your comments, like I said I try to remain positive……

Eve, All I can say about Velcade it has worked for me I started New Years Eve in 2007, but due to shingles and then my Femur fractured I had to stop after about six weeks, then my consultant started me again in April until about October 2008 and I have been OK since taken no drugs for Myeloma, I can't remember the actual regime but it was combination of Velcade,Cyclophosphamide and steriods but dosage no idea, side effects not much at the time but because of other factors I cannot be sure what causes the problems in my legs.
My three main stays that keep me going are…
1 My Wife…..
2 The Haematology Dept at the Royal Devon & Exeter Hospital they are fantastic…..
3 In Exeter we have a Support Group and meet once a month and have various speakers and do many other things we do even go out for a meal together its really good and I have made some good friends. the one thing that it has taught me is that everyone with myeloma are different in the medical sense, and everyones treatments are different, we also have two people who have had MM for over 12 years.
I think I have gone on to long so I wish all of you all the best
Regards
Peter

[eveParticipant]

Hi Peter
Thanks for replying,its just interesting the different ways Velcade is given,and with different drug combinations,and how effective it is on different MM,:-S
You are the first person I have heard from who was on Velcade and 3 years on is alive and kicking,half the problem is I am 80 miles away from a support group and this is a life line to me.Like most people I am looking for answers.:-) Eve

[MinParticipant]

Hi Eve

Why dont you start up a support group? if there is nothing available this web site may be able to help you to organise one!
It will give you something posative to achieve that everyone who needs it will apreciate. Just a thought
Min

[eveParticipant]

Hi Min
Lovely to hear you are posting again,so worried for you at one time,knowing daughter lived away and son at sea.
I have thought about starting a support group,but it would not be practical for me personally.For a start no way would Slim go!!:-P,Have been trying to get him to go to London,but no go!!!!!
He is a very self contained person,its me that feels the lack of support.This site helps so much,I know just from Slim how we all deal with this so differently,Slim thinks about things for a long time,then asks.
I just wish that people who have remission would post more,like Peter so we could have good news,
Min you have so much knowledge to help people here,so yes I wish you would keep posting,you are a cyber friend.
Being deaf doe not help my situation either,hopeless on phones,need one to one situations large groups are a no no.
When things are said,I always wonder have I heard right,often ask people to repeat,one of the reasons I like every thing on paper.So I do not think I would make a good support group leader!!:-( Love Eve

[mhnevillParticipant]

Hi Peter

Welcome from me too. Good of you to come on with an upbeat post. Long may your remission last.

Best wishes.

Mavis

[Author]

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