I thought I'd give another update, just in case it helps those undertaking the trial.
It seems like I have plateau'd with my treatment on revlimid – my paraprotein has dropped from 50 to 23 and my bone marrow only by about 15%. Perhaps I'd have done better with more side effects??!!

Anyway, all the results are back now and they classed me as…[Read more]

Hi again.
If you call macmillan they should be able to help with a counsellor….and remember if one doesn't work, try another- it's important to have one you get on with.
I have also heard similar things about doncaster. Don't be hasty but if you're not sure your mum is getting the right treatment, and if she can face the journey you are…[Read more]

So glad that it has arrived for you Gaye!!

As Tom would say, 'onwards and upwards'!
Debs x

Hi Amanda

Welcome on board to you, and your sister and mum if they choose to use the site too. It is definitely a fantastic source of information and support, and I for one, have stopped looking elsewhere for answers as it is always out of date!

I presume that your mum has been diagnosed with assymptomatic myeloma if she doesn't yet need…[Read more]

Hi Tracey,
Welcome to the site and hope that it helps you as much as it has helped me!
Can't say much about CTD as am on a different drugs regime, but just wanted to mention (in case you don't know) that you can't be tested for coeliac's if you have given it up….they need you to have been on it fairly constantly I think. This is said with my…[Read more]

Hi there.

Sorry to hear that Patrick's having a bad time with cramps Tina….can't be pleasant at all…then again, what is with MM!! Hope yours aren't too bad either Gaye.

Think I'll be off the revlimid soon….I seem to have plateaud so it looks like in a couple of weeks I'll be randomised (within the Myeloma XI trial) for either velcade…[Read more]

Hi Ruth,
I am so sorry about the news about your husband….of course you are upset and worried about him, and for your children.
He is really young, I was 34 (with a then 2 and 4 year old)when I was first diagnosed with asymptomatic myeloma in July 2009 and I started treatment November 2010. When you first hear the news, it is terrifying, but,…[Read more]

Here you go Jon….Scotty and Phil's email addresses….Scotty is often abroad with work but email them both and one of them will sort you out with an invite

phil.kelly2@btinternet.com

c.scott@added-value.com

See you on there.

Hi again Jon,

We're real rebels on this bit!!! Not really. I think Scotty and Phil set it up originally for people that bit younger who have slightly different concerns. Work, young kids etc. And the idea that with all that, that life suddenly looks very different when you're diagnosed with MM.

If you go onto the main bit you can get Scotty…[Read more]

What great news Nicki…..hope all goes well with the house move and that you have a lovely break in Poland.

Happy Wedding Anniversary 🙂

Love
Debs x

Hi Jon,

Welcome to the MMUK site and I think and hope you'll find it a great place to get info, support and friends! I don't think I could have managed without this and the Under 50 site. That, and like you say, a hugely supportive group of family and friends.

You don't come across as arrogant at all….very positive, especially considering…[Read more]

Hi Marion,

I'm currently on the Myeloma XI trial and got the revlimid (lenalidomide)branch of it. It seems like the side effects are different for everyone but I have to say that I have had minimal side effects in the grand scheme of things. Tiredness, tenderness and some breathlessness and awful tastes seem to have been the worst for me (oh…[Read more]

Hi Norman,

Sorry to hear that you have levelled out on Revlimid. I thought you might be interested to know that the same seems to have happened with me. 4 cycles in, and after an initial drop from 50 to 32, a second drop to 27, I have now gone back up to 28 and it looks like I will also be going onto velcade (or coming off the Myeloma XI trial…[Read more]

hi Bridget
Just to give another idea Im starting to think it could be the coproximol….took it again twice test and the horrid taste came back this afternoon. Got appt today to pick up cycle 4 drugs so will ask the question!
Debs x

Oh Bridget,

So sorry you're feeling so rubbish. It can be awful can't it. I have my sister in laws 30th on saturday….evening wear only…and I'm going to look like a hamster faced heffalump!!!

I didn't realise it was a common side effect the feeling of bruising, but I get that every now and again (can't decide whether it's dex, rev or…[Read more]

Happy Birthday Bridget. I am glad that you have had a lovely day and am glad it makes being shattered well worth it!

Thank you for all of your support and comments on the site…I often read and don't reply but as others have said, you are a true rock to so many people….and so positive which is what we all need…but you manage to do it even…[Read more]

Mine has come back Keith….just as I have gone back on the dex…the good news is it's stopped me picking this time, so perhaps the beached whale effect will calm down!!!

We'll have to keep an eye on it and work out what it is exactly that is causing it 🙂

Debs x

Hiya Keith,
Now it could be the zometa I suppose…I have that too! I'm with you about not liking it. The first month, it put me off my food….hated the fact that everything tasted the same…even the glass of champagne I tried!! But since then it's done the opposite….on my quest for normality I eat and eat and eat and now I'm becoming the…[Read more]

Hi Keith,

I'm not on velcade but I would describe the taste that I get on revlimid/dex/Cyclophos as being like sea water and quite salty. Even glasses of water taste of it??

Do you take the velcade with anything else? Someone else hadn't thought of it tasting salty when I mentioned it and then realised that was exactly what it was that they…[Read more]