Because you are non-secretory I would push for regular…[Read more]

I’ll talk about the Radiotherapy first. I find it does help in snuffing out discomfort from lesions, my specialist also tells me that the effects aren’t just therapeutic but also help to prevent the spread of the disease. So might be worth talking to your specialist about that.

I have an MRI scan every 6 months to keep track of my…[Read more]

I have non-secretory, kappa light chain myeloma.

The disease presents as bone lesions with few other symptoms on progression or relapse. I was diagnosed 5 years ago and have had 3 types of treatment including an autologous stem cell transplant and on relapse revlimid which gave me 8 months remission until October last year when I…[Read more]

I have non-secretory, kappa light chain myeloma.
The disease presents as bone lesions with few other symptoms on progression or relapse. I was diagnosed 5 years ago and have had 3 types of treatment including an autologous stem cell transplant and on relapse revlimid which gave me 8 months remission until October last year when I…[Read more]

Myeloma drugs removed from the Cancer Drugs Fund in two month’s time

I don’t know where to being really. I’m on Rev at the moment so will continue to receive this but new patients wont. Pomalidomide was the next drug in line when Rev fails. I’m devastated this decision has taken away my hope and reduced my life expectancy by…[Read more]

I’ve been scheduled 20mg of 2mg Dex every 4 days so 80mgs a week in total. I believe the standard dose is double that but the specialist thinks for me this should be ok.

Just to let people know I’ve contacted Celgene (who make Rev) directly to ask about caffeine and alcohol consumption impacting treatment so will report back.

next week I’ll be starting my new treatment and I have some questions.

Firstly over at myeloma beacon the profile for Revlimid states the following:

“caffeine, alcohol, cigarettes, and street drugs may affect the action of Revlimid”
http://www.myelomabeacon.com/resources/2008/10/15/revlimid/

I’ve never heard before that caffeine…[Read more]

Unfortunately now officially confirmed, the MRI scans show what my consultant called a “tiny but measurable” increase in the size of a rib lesion. I’m out of remission after only getting 14 months from my SCT.

I’m going to have a small amount of radiotherapy to zap the lesion and then…[Read more]

I found this on Myeloma beacon it’s a Medic’s reply to a similar situation. As with all Myeloma issues it’s a complex picture:

Chronic pain sometimes becomes an issue with the destructive lesions. Adequate pain control is very…

[Read more]

f****it. I guess this means I’m coming out of remission after 14 months.
Any advice gratefully received.

Tom

corbyt@wmin.ac.uk

Tom

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

@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]

Well that’s gone very, very quickly.
A couple of weeks back I had my 3-monthly and all my bloods, light-chains, pp were normal.

For those about to have an SCT it’s eminently doable, I had a relatively easy time (stomach infection aside) and was back at work part time within a couple of…[Read more]

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]

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]

You should be pleased…[Read more]

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]

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

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

tom

tom

tom

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

My consultant says that curcumin, green tea etc. is probably harmless otherwise as long as you don’t overdo it.

I’ve had trouble logging on to the site so haven’t visited for a few weeks. I had no idea that he’d been taken for the worse.

Dai was so full of life, and I mean that in its fullest spiritual sense, that it seems…[Read more]

http://www.nice.org.uk/aboutnice/howwework/how_we_work.jsp

We are internationally recognised for the way in which we develop our recommendations, a…[Read more]

http://www.myelomabeacon.com/news/2013/05/24/future-multiple-myeloma-treatment/

Tom

My opinion on the food-cancer link is that despite there being not a huge amount of medical evidence, it's likely. It's also good for your general health to eat in a more considered…[Read more]

I forgot to mention about the injection site bruises. Yes mine came up lovely for every dose. Occasionally itchy but aside from that nothing much to worry about.

Here is the perspective from UCLH.

We're spoilt rotten with the new Macmillan Cancer centre, as…[Read more]

I would say that most of the time I would have been fine to drive, the odd day I wouldn't have wanted to because I wasn't feeling well enough. But do check.

I had 3 cycles and worked full-time throughout. It wasn't really until the 3rd cycle that I suffered what i call my 'sofa days', i.e. feeling drained and a bit nauseous and this tended to last a couple of days post the velcade injection.