[MothasParticipant]

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.

[MothasParticipant]

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 return. The Macmillan site has some useful information sheets on this and you might want to drop them a line to talk through your situation. Edit, I’ve just seen you’ve already done this.

• This reply was modified 11 years, 2 months ago by  Mothas.
• This reply was modified 11 years, 2 months ago by  Mothas.

[MothasParticipant]

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.

[MothasParticipant]

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?

[MothasParticipant]

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 order my hours.

In retrospect I went back too soon, but I did feel capable of work and it helped take me away from thinking about my predicament. Basically it made me feel normal again.

Everyone is different, but you need to discuss your progress with your specialist. I felt ready and they were happy about it.

The actual SCT process isn’t particularly pleasant but it wasn’t as bad as I thought it was going to be. I passed through it reasonably unscathed but again people respond very differently. Some people on here have had it tougher. The first few months back you will have to be careful with food and potential infections. Lots of healthy broths and you begin to build up your strength through gentle exercise. I used to walk around the house and up and down the stairs.

all the best

tom

[MothasParticipant]

@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 suffering from neuropathy.

[MothasParticipant]

@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 years. They use it to track the bone damage and any development in disease. I’ve got one coming up on Monday as it happens.

http://www.myeloma.org.uk/news/pivotal-study-published-on-new-whole-body-imaging-technique-in-myeloma/

[MothasParticipant]

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 with Good Partial Remission so congrats.

[MothasParticipant]

@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.

[MothasParticipant]

@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 of apology from UCH about the stem cells and left it at that. I was happy with the explanation.

[MothasParticipant]

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 3-monthly test regimes (bone marrow, blood tests) and MRI diffusion Scans to look at bone development. My best advice is to find out as much as possible about the disease and treatment options. I’m very happy with my treatment from UCH but I wouldn’t hesitate to get a second opinion if not.

[MothasParticipant]

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.

[MothasParticipant]

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

tom

[MothasParticipant]

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

[MothasParticipant]

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

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