[petesilverParticipant]

IT always is a difficult I recently tried AGEUK and as I have been in remission for the last 12 months I got an reasonable quote but that was only for europe….I think though i can't see much luck for DR.

[petesilverParticipant]

I agree with what you say but I think you miss the point, I think people get the wrong idea what support groups are all about, it not a matter of sitting around bemoaning our misfortune we all tried to be positive, sometime have talks by a wide range of different people from a consultants to aromatherapist we also did outside trips together and we also some months we meet at a hostelry for lunch, in all we always tried to do something different every month. We all exchange phone no's and emails so if anyone just wants to talk we are always there.
We also enjoyed a couple of art sessions and made a lovely joint work which is displayed in our haemotology waiting area.
It is also amazing what information you can get just from talking to other patients sometimes what really stands out is that everyone is different some treatment are ok from some and not others, if only people would shake off there perception of what support groups are all about, I agree we have had a few sad events but in the end one has to be realistic it comes to all of us in the end, but as long as the doctors do their best is all one can ask.

[petesilverParticipant]

I never saw this documentary but sounds like a bit of sensationalism should have asked me to go on !! diagnosed in 2004 and still here and been in remission/plateau for 4 years with no chemo. maybe i'm lucky but reading this posting makes me angry, I agree have lost some good friends from our support group but several ther have been with it for over 12 years. Live for today, yesterday is history, don't worry about tomorrow it hasn't happen yet.

[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

[Author]

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