Hi Jen

What great news about your pp levels – how many cycles was that on? I am hoping desperately for that to happen to me. I got hit on my second dose of velcade yesterday. Was fine till I got home and then flaked out totally and was very emotional. It was out of the blue too, as I hadn't expected anythimg much for a couple or weeks!!!…[Read more]

Good luck for next week Sandra, will be thinking of you and hoping those blighters have come down more than they've gone up!!!!

Love
Debs x

Hi Gill,

I think it is REALLY individual. I was up at 32 when I was first diagnosed but was still asymptomatic. It rose to 50 before I started treatment (and even then it was touch and go whether I really had bone pain). I know others who didn't start treatment until their pp was 70. I think it's about the other symptoms surrounding you, and…[Read more]

Ah Gaye,
You made me chuckle on a weekend I don't feel much up to that 🙂
I wouldn't worry one bit….sometimes I think they probably wish we did treat them more like our friends….It's what I'm working on with mine anyway!!
Better what you put than love, hugs and smooches….now that might have sent her running!!!
Hope you're feeling…[Read more]

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fantastic source of information and support, and I for one, have stopped looking elsewhere for answers as it is always out of date!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 Roz

There is nothing set in stone about the grieving process, everyone does it in their own time in their own way, dont feel guilty that will do you know good.
Whether you change your home or not Michael will still be with you in your heart and memories.
keep going your doing well.
with much love michelle x x

Hi Roz

Lovely to hear from you, glad you are ok. I too have been wondering how you are, keep in touch.

with much love michelle x x

Hi Sarah,
As Bridget says it can be very scary. My mum was diagnosed in July 2009, She was 63, she is now 65, She was in a really bad way at diagnosis and has given us some real scares, She is now doing as well as can be expected, she has a huge amount of bone damage, but she never lets it get her down…..(think they call it bury your head in…[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 Jon, sorry that you have had to join the club, however, hello and welcome. I am not a sufferer but my mum is, My mum tends to bury her head in the sand, me on the other hand needs to know!!! I have found great help and support on this site and met some fantastic people, support and friendship….some of us are avid facebookers lol. You do not…[Read more]