Always heading vertically Tom, always.

@Eva

thanks Eva, I suspect (and fingers crossed) that coming off dex is the thing behind this. I've also started taking a bit more strenuous exercise. I'll have a clearer idea tomorrow after seeing the onc.

Thanks to everyone who's replied it has eased some of the anxiety.

t.

Thanks Michele most helpful and congrats on your remission. Looking good and long may it continue.

Megan thanks for the reply that's really helpful.

My pain, well it's more discomfort than anything and is less than prior to the treatment, I was just getting that horrible paranoia that it meant that PAD might not have worked.

I think also that Dex can mask pain and discomfort and when you get off it, the discomfort can re-emerge.

thanks…[Read more]

Thank you for passing on this sad news.
My thoughts are with his family, friends and loved ones.

I never met Keith but he always contributed thoughtful, supportive, informative posts to the community and will be missed.

Tom

Hi Paul, I was on PAD so I had adriamycin in place of cyclophos.

I had a bit of a dry nose on occasion with velcade and when I blew it I sometimes snotted out a bit of blood.
I also got eye infections.

I would talk to one of the specialists or nurses on this site.

Helen, the relapse sucks.
Of course you're all over the place.

As far as treatment is concerned I think the consensus in the UK is to go in hard and early as possible. I'm showing nothing in my bloods, urine or BM but they're basically giving me the full bazooka.

big hug from me too.

tom

Mandy can only agree with the others. You've already shown immense strength and fortitude to get as far as you have done. Most people in their lives never have to face the kinds of things that we as MM patients do.

Hang in there

all my best

tom

ellen thanks for the update, our thoughts are with keith and sue as they face this most difficult of times.

Dai, yes I remember the posts, stickies at the top would make it so much easier to find stuff. Setting up the stickies should be easy enough. Digging out all the old posts might be a bit of a job, but if everyone responsible for the original posts took on the job for theirs it wouldn't take long.

Charlotte thanks for the reply, glad to hear all is well with you and fingers crossed it remains so for many years to come.

An important post.

If we aren't going to push for change, nobody will do it for us. In particular speedier access to new drugs that are coming on line. Our illness is time critical as we all know.

Thanks Tom, I'm heading vertically as suggested 🙂

I want to thank everyone for taking the time to respond.
I'm definitely going for it. I realise that there are other options but on weight of evidence I think this gives me the best opportunity for sticking around for a bit longer!

If anyone out there has had SCT at UCLH I'd really appreciate some insights into what it was like. I've been…[Read more]

Hi Joanne,

yup apparently it can make your eyes itchy and when you rub them you can transfer bacteria to them. I got two styes, one in each eye. At least it was symmetrical!

I had antibiotics to clear them up which sort of worked although I've still got a little bit of an infection.

They didn't stop the treatment though.

Thanks for that Paul, I'm hoping to have my SCT within a couple of months.

Dai sorry to hear you're having a rough old time of it.

I read up on Zometa when I heard I was having it, and the flu symptoms are listed.

My experience of the staff who have given me the infusions is the same as yours though, very few seem aware of it. I think it's a fairly common side effect.

Thanks to everyone who has replied to the thread.
I've had around 12 infusions of zometa now and only had 'flu' after the first.

Interesting to see people's different infusion regimes, mine is once a month and will be for 2 years.

thanks to all.

tom