I would avoid supplements whilst on treatment. Green tea doesn’t mix with velcade therapies so avoid if you’re in the process of receiving chemo of this type.

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

Oh no.
That’s really sad, Dai was a gentleman and a real support for all of us.
I’m sitting here with tears in my eyes.

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]

Mandy good luck with it all. You're a few weeks ahead of me. I'm starting my SCT treatment next week.
Say hello to Liverpool for me, many happy memories of the city. From where you are do you get a view of the mersey?

This is how NICE works, as far as I understand it operates on guidance from a mixture of health care specialists, local and national government, bean counters and patients advisory groups.

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]

Jean I don't think it would translate to kindle very well so you're better off with the paperback.

I bought the book mentioned on that program yesterday [i]Zest for Life: The Mediterranean Anti-Cancer Diet [/i]. Looks quite good with some very nice recipes.

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]

Ha, ha. Helen you're [i]well dexed up,[/i] as the kids on the street would say 🙂

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]

Helen regarding driving I would check with the consultants. I do drive but since I had the plasmacytoma in my shoulder I haven't really bothered as it is uncomfortable.

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.

Helen I can only give my experiences with PAD (Velcade, Adriamycin, Dex).

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.

Dai I agree with a lot of what you say but I think it's fair to say that trials are run for the benefit of research and the patient community that will ultimately benefit them. Trials have to be designed in a certain way to produce useable or useful knowledge about the drugs being tested. If you have too many patients with different types or…[Read more]

Eva thanks for the suggestions really helpful. I'm going into UCLH today to see a doctor and will press to get an appointment with an eye specialist.

Good luck Dai.

Eye drops a great idea, don't rub your eyes and transfer bacteria…

I still have infections in both my eyes and won't be allowed to proceed to my SCT until they clear. I've had them for over 2 months.

tom

As for new drugs, I believe that trial or no trial, myeloma patients should have the option to benefit from new treatments as soon as they are licensed. What have we got to lose after all.

I was put on the PADIMAC treatment which is a trial at UCLH, without officially being put on the PADIMAC trial.
Don't ask me how that works, I have no…[Read more]

This is a complex subject. As a researcher I can see it from the other side too (although not a medic).

Trials are designed to look for specific responses to specifically staged versions of myeloma, for the trial method to be rigorous and consistent only patients with certain symptom and treatment profiles will be admitted.

I've been told…[Read more]

There's some truth in this for certain.
It's also a question of training GPs to spot and be aware of potential myeloma symptoms more proactively. Certain symptoms should raise red flags that lead automatically to immediate testing.

This is always a tricky one isn't it.

I had shoulder pain which was misdiagnosed by my GP as rotator cuff syndrome, which to be fair to him I displayed all the typical symptoms. He was going to refer me to an NHS specialist but because I was in such pain I opted for a speedier route and I plumped to see a 'top' private consultant instead. Who…[Read more]

Thanks for representing the community Andy.

Hi Nicki
I'm really sorry for your loss. 38 is no age and is young to develop myeloma.

Myeloma is a horribly complex disease that is really a collection of different myeloma forms (clones). It has multiple impacts on different parts of the body so can interact with pre-existing conditions too.

The disease and the treatment also hammers the…[Read more]

Hi Jane

I was given aqueous cream when I had my radiotherapy last year and told to apply twice a day after each session. I did have an area where it did burn but that healed after a few weeks at the end of treatment.

What other treatments have you had? If your immune system is compromised due to treatments that may be a contributory factor…[Read more]