H Michelle,

I'm on zometa too…..was fine for the first 24 hours, had flu symptoms and aches like i've never known for the next 24 hours, and was then fine. And when I had my second infusion last month I didn't get any side effects at all.

I hope that your mum avoids the side effects, but from what I know (not v much!!) zometa has had a…[Read more]

Hi guys,

I got this too. I don't believe it's a bogus email, but it is one from the Myeloma forums site….i seem to have totally deleted the email off my system (as I don't use the site anyway now), but I know that Andy once wrote on this site trying to encourage people to take a look at his too.

I don't think anyone needs to worry about…[Read more]

Hi Hils

Never feel guilty, we are all different and all need to know things at different stages, not one person is the same. You can do your own research, but it doesn't mean you have to tell your brother, this is your private time.

with much love michelle x x

P.s I have just sent you a private message x

Hi Dai

Yep dont i know that, at the mo my eldest going thro something similar from his own email!! which we are trying to prove that he did not send, its driving me nuts! how do people do that?? and why?? My son is really depressed over the whole thing and he is only 17 and he has been suspended from college cos of it! I am so upset and cant…[Read more]

Hi Dai

I think i agree that is defo a scam mail, be careful!! I would ring Myeloma UK I think and ask them? Please don't answer that email, sounds very dodgy to me, as far as I am aware no one in myeloma uses hotmail, they all have their own email thro myelomauk.

Please let us know what you find out

with love michelle x x

Hi All

I can now confirm that the infusion Mum had was Zometa, I am sure thats not what the specialist nurse said, but hey ho I was definately in a non listening mode yday!! It took around 30 mins all in all as she had already had her blood tests on wednesday, she is back on magnesium cos thats low, but other than that she is well, and managed…[Read more]

Thanks

Gaye that could may well be it!! was not really taking in what she said, which is not me……got lots going on at the minute, Not that that should be an excuse really!! I am hoping to get up to the hospital today, so will try and get the proper name for it. Ha ha yep Onwards and Upwards certainly should have been the new name. Please…[Read more]

Hi David

What fabulous news, great to hear! Dont do too much, take it easy with the cycling.

with love michelle x x

Hi (sorry you didnt put your name)

It is awful and comes as such a blow when someone we love is diagnosed with Myeloma. My Mum was diagnosed in july 09 at the age of 64, how old is your brother? My mum herself buries her head and so does my dad, I joined this site not long after she was diagnosed and found help, support and most of all…[Read more]

Hi Keith

Sorry to hear that you have had your worst fears confirmed, I am wishing you look for monday. Keep touch and let us know how you get on.

with much love michelle x

She has had 2 fractions of radiotherapy one when she was first diagnosed and the other last summer time I think!? Maybe they might try some more?? Good look when you see prof keep me posted to what he says. By the way she will kill me if she knows i have put the pics on FB lol.

with much love michelle x x

Hi All

Just a little update, Mums proteins have come down to 4 I am so pleased, Revlimid is working well!!! She is still very tired and does have increased pain, She has been referred back to the palliative pain team to have a look at her pain relief, she is on regular methadone and oxynorm for breakthrough pain relief, She is taking the…[Read more]

HI Roz

Just to say I am thinking of you and your family today. The poem is lovely and as everyone else it brought a tears to my eyes too.

with all my love michelle x x

P.s keep in touch x

Hi Jenny

Hello and welcome, My Mum has Myeloma and was diagnosed in July 09, she has had a really rough time, but is reasonably well at the moment. I am sorry to hear about the problems that you are having, I can see it from both sides of your family Yours and wanting Your Dad home, and also your Stepmum, She will be feeling very frightened and…[Read more]

Hi Gavin,

Things have gone pretty well with the trial so far, and I have to say, in comparison to what I had expected (The devil dex days you hear about, and the sickness etc) it has been much better. It sounds like CRD is slightly easier to tolerate than CTD although I don't know if that has been proven. I haven't had the response to dex that…[Read more]

Hi Ron,
Sorry to hear that your wife has been diagnosed with MM….it is a hard diagnosis for everyone who goes through it. Breathlessness can be a sign of low hb levels….which in turn can be a sign of the myeloma progressing. BUT, don't panic because quite often, the two aren't linked. I got breathless just after I'd had a dip in hb…[Read more]

Hi Gavin,

Sorry you're going to have to start treatment, but hopefully now it will help keep the myeloma at bay. Where are you being treated by the way? I started on the Myeloma XI trial 7 weeks ago and have been lucky enough to get revlimid…will hopefully find out next week how it is affecting my paraprotein.

Let me know if you have any…[Read more]

Hi Jonny,

I had something similar. My consultant in Bucks just made me feel like I was asking silly questions (and believe me, no question is silly with this), like I was being overly paranoid and like I should just go home and accept it all quietly. At the same time, he hadn't even heard about things like curcumin.

We got a second opinion…[Read more]