Hi Kay,

I remember really well what you are describing….both with the BMB and the anticipation. I think you'll be finding out today so good luck with it all and I hope that your consultant is wrong…they quite often are!!!

If you get on the trial and what to have a natter about it, drop me an email at gascoyne2@virginmedia.com. I'm happy…[Read more]

Hi Jenny,

I just wanted to say good luck with the next period for you. It must be hard to selfless in this and help him in what he wants, when the last thing you guys will want is to lose him. But you sound like a close family and I hope you have the support around you that will help.

Good luck with the decision making, the conversations…[Read more]

Hi Tina,

Really sorry to hear that Patrick is out of remission, especially after a rotten christmas. I hope that they manage to get him sorted over the next few weeks and months and that he isn't suffering too much with it all….and that you aren't either.

Thinking of you
x

Hi Roz,

That is an amazing amount and I am just so sorry that the money came from Michael passing away.

MyelomaUK will write to you to confirm they have had it, but if you are worried, drop them an email, or call them. Sometimes, it takes a few days for them to process things.

I am sure they will be so pleased to receive the…[Read more]

Hiya Jean,

CONGRATULATIONS!!!:-D
What lovely lovely news for you and Frank!! Really happy for you and she is beautiful!

Hope you get to enjoy some cuddles very soon!
Debs x

Great news to hear that you're home. Hope it all goes swimmingly and that you are able to recouperate with no problems.

🙂

Take care
Debs

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 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]

Just to add my bit, I've been on the Myeloma XI trial for 6 weeks now. Like people have said, I think different drugs affect different people in totally different ways. I haven't had any major side effects from the revlimid, but have been tired and get quite breathless. I also had the rash for a few days, but found that it calmed down with piriton…[Read more]

Dear Roz,

I am so sorry to hear about Michael. All my best wishes, thoughts and prayers are with you, your daughter and granddaughter at this such difficult time.

Debs x

I would definitely write to them and explain to them how disappointed you have been with their attitude etc and let them know that you plan to take it further if they don't do anything about it. Sometimes (and I would hate to say every time) that does the job. Not that you should have to!

Min, they weren't people to be bailed out (partly…[Read more]

Hi Stuart,
Just a thought but could there be a topic for people who have sort of 'survivor' stories? There was someone on the Under 50 thread on the old site for example, who talked about how he'd had MM for 19 years I think it was…..and that's the sort of thing it's great for us all to see now and again…..esp for people who have just been…[Read more]

Hi MIchelle,

Great news about the protein levels! Really pleased to hear that. Revlimid sounds like such a successful drug….my levels 'look' like they're dropping on it too!

Does she struggle sleeping? I know I do, and don't know if it's the revlimid or the other drugs. But I wake every hour most weeks since I started on the revlimid.…[Read more]

Oh Roz,
I am so sorry. Like Michelle, it made me very sad as I have followed your journey on this site and feel like you guys have been through so much…it doesn't seem fair.

I hope that they are able to give you some reassurances on Monday and that it doesn't go the way you are imagining.

With lots of love
Debs x

Hi Kay,
Sorry to hear that you've joined all of us on here, but happy that you found us as it's a great site and you'll get loads of support.

I am 36 and was diagnosed, like you, by a random blood test, in July 09. Also like you, my hb kept dropping low while my paraprotein kept rising. Over the summer, the topic of treatment started to…[Read more]

Oh Jean,

I'm so sorry that you have had such a disasterous holiday….you must be coming back more tired and worried than when you left. But people are right, you can't not do these things just in case. Hopefully as time goes on, you can put it down to a bl_*dy bad experience and when you have a lovely time next time, you'll forget about…[Read more]