Robert i take a supplement called POMI-T which is a combination of curcumin, Broccoli florets, Pomegranate seed and whole fruit and Green Tea. I take 2 a day, it has been clinically trialed and has shown benefits for prostate cancer sufferers. All the active ingredients also are supposed to be good for myeloma patients too although there is no…[Read more]

Vanessa, yes I’d be interested in this.

Tom

My consultant said it probably wouldn’t do any harm but there isn’t really enough evidence to suggest it’ll do much good either. Based on that you may as well add it as supplement. I do.

Emma do you mind me asking what kind of work you do? You are legally protected and as a myeloma patient you would qualify as being described as disabled. Was an HR person present when your boss suggested you consider medical retirement and what were their reasons.

I had my SCT just over a year ago, was allowed sick pay and a phased and supported…[Read more]

I developed stys as a result of my PAD treatment. Called ‘velcade’ eyes by my consultant, I still have the residue of them a year on and they can flare up quite quickly.

Is sympathise about the cancelled holiday, unfortunately it comes with the territory with this disease. It’s worth having a second opinion but the fact that the disease is at such a low level that it doesn’t require substantial treatment is something to be happy about. What was the initial diagnosis?

Thanks for the replies people sorry not to respond sooner, it’s a bit frenetic at work.

@Wifeof – The going back to work conundrum. I’m an academic and responsible for a number of major research projects and I’m also the Director of our PhD programme. It means I’m pretty much on a minimum 6 day week but I do have flexibility in terms of how I…[Read more]

@mandyphillips41

Dear Mandy, I am approximately 8 months on from my SCT, although not suffering like you are, I still get the odd bit of bone pain in the area where I had bone damage, and aches and pains in my legs and shins too. Myeloma is pretty mysterious and I think most of us have bone pain that comes and goes at times. You may also be…[Read more]

@HelenR

Hi Helen, hope you’re doing ok. The SCT isn’t a walk in the park, but on a day by day basis it’s eminently doable and at your age I’m sure you’ll sale through.

MRI diffusion scans are a protocol or type of MRI that can spot disease development in a more accurate way. I’ve been having them at mount vernon in west london for a couple of…[Read more]

Hi Andrew,
Just seen this, although complete response is what’s aimed at these categories are movable feasts because they are based on tests that can’t really pick up all the traces of disease. So a Complete response doesn’t necessarily guarantee you wont relapse sooner than someone who’s had Stringent Complete Remission.

You should be pleased…[Read more]

@Carol
thanks Carol, I guess I’m doing ok, but with this bloody disease who knows. Good luck back in Oz I’m sure we’ll speak on the forum.

@Carol

I wasn’t on the trial, but they treated me with PAD regardless. It does seem that some consultants will bend the rules in certain circumstances.

I feel pretty good, I have zero paraprotein traces in blood or bone marrow, and a tiny trace of light chains which is why I was Near Complete Response and not Complete Response.

I got a letter…[Read more]

For what it’s worth, my specialists at UCH told me that they favoured going in early and hard. So that even though my ‘burden of disease’ was low at detection, they put me straight on Velcade (Bortezomib), Adriamycin Dexamethasone (PAD) for 3 cycles followed by a SCT this July.

I’ve achieved Near Complete Remission from this, but still on the…[Read more]

I’ve just gone through a really tough period as I’m facing periods of testing to assess the success of my SCT. I find meditation really helps.

Me and the wife are going for counselling in the new year too.

Thanks Peter, there’s one just up the road from me in Harrow, walking distance.
I’ll drop them a line.

tom

Thanks Peter, did your GP refer you for this or did you self-refer?
I ask because looking online the prices seem to vary quite dramatically – anything from £50 a session to £75 for a batch of 10.

tom

Hi Pete
like you I had a plasmacytoma and after radiotherapy my shoulder has never really been the same since. I’ve heard that HBO can help with blood circulation and wondered what your experience of it was.

tom

Hi Tom, crap news why is it always just before xmas eh.

You’ll probably be a candidate for a 2nd SCT as you had such a good response last time round

all the best mate

tom