[MothasParticipant]

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

[MothasParticipant]

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

[MothasParticipant]

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.

[MothasParticipant]

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

[MothasParticipant]

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.

[MothasParticipant]

Thanks Tom, I'm heading vertically as suggested 🙂

[MothasParticipant]

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 reading Alex's (of this parish and the under 50s group) blog which has given a very good account of what he went through
http://dialmformyeloma.blogspot.co.uk/

but any further info, reflections, thoughts would be gratefully received.

All the best people,

Tom

[MothasParticipant]

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.

[MothasParticipant]

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

[MothasParticipant]

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.

[MothasParticipant]

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

[MothasParticipant]

I empathise hugely.
Tomorrow I see my specialist, I try to put it to the back of my mind before I actually cross the threshold of the hospital. But it's hard not to run through a few scenarios beforehand.

Lost your parking space. Not good, no tablets for that I'm afraid.

all the best

tom

[MothasParticipant]

Good luck with it David.
Yes, I have a blood test on the day of the injection too.

I'm in my third cycle of it now, and have tolerated it well.

I did get a couple of eye infections, apparently it's one of the rarer side effects, they call it "velcade eyes"
I've had some very mild neuropathy and a little bit of nausea for 48 hours afterwards in my third cycle.

[MothasParticipant]

I'm just about to finish my third cycle of velcade subcut.
The injection itself is in to the fleshy part of the stomach and is not too painful.

The first couple of cycles i tolerated really well with only minor kickback from side effects. Tiredness some afternoons and a bit of nausea occasionally but nothing too bad.

My third cycle this has increased slightly but I've worked throughout and managed to do ok.

I've had some very mild neuropathy but again, nothing that's stopped me doing anything. Barely noticeable.

tom

[MothasParticipant]

Hi Andy, I can't answer this I'm afraid but I would hazard a guess that having myeloma shouldn't affect you at all.

However, if you are undergoing treatment you may be advised not to drive if you are taking certain combinations of drugs. I'm having the same PAD treatment as you will be and nobody has told me not to drive.

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