If you are new to the Myeloma UK community, this is the Topic to say "hi" and introduce yourself. It's a good idea to include when you were diagnosed and something about your current situation.
Newcomers - introduce yourselves on the Welcome... - Myeloma UK
Newcomers - introduce yourselves on the Welcome topic
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Myeloma-UK
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7 Replies
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Hello All, my name is David and I was diagnosed in March 2013 and live in Merseyside. First signs were a bad back which quickly got worse, unable to move due to plasmacytoma on the spine and spinal damage. Lost 4 inches in height. Emergency hospital admission due to high calcium, radiotherapy at Clatterbridge , followed by CTD and Stem Cell Transplant at the Royal Liverpool in 2014. Pleased to say that response to treatment has been very good and quality of life much improved.
We have a myeloma support group for patients and carers in Merseyside which meets once a month in Southport if anyone interested in meeting others similarly affected.
Hi every one, not new to myeloma uk nor new to myeloma.
First diagnosed with it in 2009, had second transplant in November 2015, first one in 2009 and that one gave me four years drug free remission (I know it's not remission but it's what I am comfortable with) I am a young 61 and love to travel in between treatments lol. Favourite saying is onwards and upwards xx
Hi everyone! My name is Michelle, Shells to my friends, and I live near Stafford. I was diagnosed in January 2011 after 12 months of back pain.
I've had CTD, followed with a SCT in Sept '11, started VCD in July 2013 and 2nd SCT in Feb '14, and now on cycle 10 of Rev/Dex after relapsing in March '15. I have my treatment at the Royal Stoke in Newcastle under Lyme, Staffordshire.
I can honestly say that me having Myeloma has been a blessing...a strange thing to say I know.....but I have met the most of my forever friends because of it, and have done and experienced fab things I would never have had the opportunity to if I hadn't got Myeloma.
Life doesn't end with Myeloma.....it just changes a tad 😊
Hi All. My name is susie and I was diagnosed in August 2014 with paraproteins of 68, after 3 years being monitored for MGUS. I was treated on the Myeloma X1 trial with RCD which quickly brought the pp's down to unmeasurable. I've been drug free since Feb 2015 (apart from Zometa) and got on with life.
My pp's have slowly risen and have, I hope, plateaued at 37. They've told me when it reaches 50 it'll be a BMB and take it from there.
Long may it be. x
Hello i was diagnosed with an MGUS family history of myeloma so i guess i am thinking its when not if in my case
Hello,
I've appreciated your posts, and am pleased to find a place where there's some real experience.
I was diagnosed with mgus about 4 years ago, i think i had an 8% reading in my bone marrow then, and now my paraproteins are at 25; total proteins at 92; fkap/flam ratio 0.05L. So a little out of range, but my specialist assures me all is fine. My numbers creep up very slowly, so it's easy to ignore at this stage. I actually only think about it around 4-monthly check ups. Having read some of your posts, i feel a bit like an imposter here, but i want and need to learn more, and this is where the experts are!
I also have ET and PV which are the less threatening, but more troublesome ones. However, they all point to bone marrow errors.
I'd love some predictability, to help me with some planning, but i know we are all different and no one really knows how it's going to play out.
With no symptoms, it's hard to switch my philosophy from career and retirement savings! I'm 53.
Will do - my name is Gaythorne and I am going up to the Sutton branch of the Royal Marsden today, and will have harvesting tomorrow. My wife has given me six injections in the last couple of days, of a drug which will help the white cells be harvested. So far so good, although I have had a number of minor setbacks and side-effects that I could have done without.
I realise this is just a very non-medical type of message, but I thought I would keep it simple at this stage. I would appreciate any advice that you can give me just before the harvesting starts. I am a little apprehensive about it but Have
Been told that it is very straightforward procedure.