Hi Dai,

We went to the London one last year and I have to say while I was dreading how long the day would be, it was over before we knew it, and I wished I'd had longer to go to more of the sessions!!

The only tip to making the most of it perhaps is for you to split when it comes to the split sessions, and that way you can report back to…[Read more]

Hi Keith

Pleased it is going good for you 🙂 as formeav got to grips with it on Good days:-D and am not having any treatment Cept Zometa infusion:-S

and Debs as for the feet mine also but thankfully no pain some time they just feel fatter:-/ or that I have something under my toes like wool:-0

And Gill ur comment ::::::::Stephen…[Read more]

Dear Susan

I am so sorry you lost a brother to this dreaded MM, and also give you my condolances on the loss of your elder brother, Life is so cruel.

I see you have just joined us, please stay with us am sure we can all rally round and help you in your hour of need.

Love Hugs and aslo Prayers sent to you and your Family.

Tom x

I am so so sorry for the loss of your brothers. I cannot even begin to imagine how you are feeling at the moment and how hard this must be for you and your family.

I don't really know what else to say except to how much I will be thinking of you and your family. And remember, you don't have to come to terms with it quickly. Use this period to…[Read more]

Hi Keith,
So glad to hear that you have responded. Gosh it has really made me realised just how different we all are with our MM. My pp's went down from 50 to 27 on revlimid and they didn't class it as a very good response!!!

Am now on the velcade and on week 3 of my first cycle. The first two weeks were problem free bar ABSOLUTE exhaustion…[Read more]

Made me blub too!!

Aren't kids just so special xxx

Hi Ozzy

I was told I had MM in Jan 2009 had 5 sets of CTD, went on sick at the start of 3rd cycle, (manual job) had SCT 3rd December 2009 out by the 16th December, still not feeling too good for the Xmas, but felt 100% better 2nd week in Feb :-D, I still went out for walks and the pub when feeling Ok,went back to work may 2010 had about a year…[Read more]

Dear Dai,

I've kept reading this post and wondering what to write. Still don't know but wanted to say that I've been thinking of you lots….keep that chin up as much as possible as you are a real inspiration to all of us that have read your posts over the last year or so.

Here's hoping it is a blip and they have it wrong, but if not,…[Read more]

Hi Mark

So sorry to hear about your dad….but you've come to a great place for support and guidance.

It's hard to give any tips so early on apart from my main one would be have a chat with the Myeloma UK team over the phone as they are the experts and will be able to help talk you through what your dad may be looking at ahead of him.…[Read more]

How are you doing today Nigel?

Hope things are ok. I'm a bit rough, but think I'm still trying to get my head round not sleeping, and the whole emotional side of velcade that I didn't have with revlimid. Still, hopefully it will work for me more than the revlimid did!!

Debs x

Oh Nigel
I'm with you there- day 6 here too. Up at 6am for a christening this morning (and didn't sleep well because of the drugs and the clock change anyway). Did really well for the whole day, kept smiling and then fell asleep for two hours in the car and crawled into bed when we got home….think kids were v confused that mummy was in bed…[Read more]

Oh Gaye
You have just made an old (ish) man very happy, you put a smile on my face that before reading your post didn't know I could smile that wide Ha ha.

As for My Dr well he is normal and I have met him while out shopping and he pats my shoulder and asks if its all going Ok, he once put both his hands on my fat belly and shook it saying…[Read more]

Jean,
I think Mari is right. You are better to try to get Frank to have it checked….even if he does it to keep you quiet…men like thinking that's why they are doing things sometimes!!! Hopefully it is nothing and he can turn round and tell you 'I told you so' but if it is anything that needs looking at, it is SO much better to get the…[Read more]

Hi Jen,
Yes they've warned me about the numbness esp in the feet – and said it's not worth carrying on and risking long term pain for the sake of lowering the pp…..sounds like you did the right thing.

Shame the revlimid not working in making you sleepy at night….took me a couple of days for it to kick in doing it in the evenings. Last…[Read more]

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]