[MothasParticipant]

SCT, I'm in on Monday.

[MothasParticipant]

Carol you might want to reduce the Dex, how much are they giving you?
I was on 40 mg but my consultant said 20mg was just as effective.

[MothasParticipant]

Carol I get terrible insomnia with Dex so I ask for sleeping tablets when I have to take it and find it gives me a decent amount of kip. Worth considering.

[MothasParticipant]

Dai sorry to hear that.
The annoying thing is that it only takes 15 minutes to administer the stuff.

[MothasParticipant]

I really sympathise Rebecca, telling my family was one of the hardest things I had to do. Everyone of course was very upset, but as Eve says, people get to grips with the reality of it and things settle down and believe it or not actually become quite mundane after everyone's got used to the idea.

You must of course make your own decision on this, it will be hard to keep it from them if you're having an SCT though. It's so involving.

All the best

tom

[MothasParticipant]

Good Luck Sarah Jane, I'm expecting my Melphalan on Monday so we'll be going through the process at a similar time.

Tom

[MothasParticipant]

So yesterday I had my sem cells collected. Again!

After four days of mega, GCSF injections I managed to produce 2.1 million of things. Not as good as the 8.7, I managed a couple of weeks back but enough not to have to go back today.

This time round I didn't suffer anywhere near the pain I did previously prior to collection. Some mild pulsating around the back and hips but not even worthy of a paracetamol. I felt a bit out of sorts but no temperature or nausea.

Last night I had a whopping headache and was very tired. Today, i feel better.

So on we go, I'm expecting to get them back within a week or so.

tom

[MothasParticipant]

Hi Rebecca
I'm similar to you in that I feel well and have minimal side effects. I was told by my consultant that it's best to go in hard and early with myeloma so took up the option of an SCT which I am in the process of having.

Everyone faces this disease in different ways and I firmly believe that the choices we make are the best for us to fit our individual circumstances. At some point though you're family will have to be told and you might be surprised by how supportive they will be. Remember your health is paramount here and this should be the deciding factor to proceed with SCT rather than how you might imagine knowledge of your condition might upset your family.

Might it help to talk to some of the myeloma support nurses from myeloma uk?

[MothasParticipant]

Dawn that's very interesting, are you on a trial, as far as I was aware NICE hasn't given the go-ahead for this treatment yet.

[MothasParticipant]

Susan that's great to hear and a boost for those of us with imminent SCTs.

tom

[MothasParticipant]

Maureen I'm getting my stem cells collected [i]again[/i] on Monday. Fingers crossed.

[MothasParticipant]

Eve, they packed me off home with a big carrier bag of pain killers of many varieties. I'm like you, no point in suffering if there's some relief available.

[MothasParticipant]

Colin, Vicki and HelenR

I'm good, I had my first 2 injections last night so I'm already a quarter of the way there. I know there is pain to come but with pain comes results.

I should also say at this point that UCLH have been totally transparant with me and extremely supportive. I was a little sad about the error, but overall up until this point, the treatment I've had there has been absolutely top rate.

[MothasParticipant]

Carol I don't think location has any bearing on outlook so wouldn't worry about having a lesion where you have yours. Myeloma is a very individual disease.

Lots of people on here have had CTD and will be able to advise on side effects etc. Velcade will always be a future option for you if needed so I wouldn't worry about missing out on PAD this time round.

all the best

Tom

[MothasParticipant]

Dear everyone, I want to thank all of you who have taken the time to proffer advice and wisdom.

It hasn't been the easiest few days and I needed to mull things over and talk to a few people. I will not be pursuing any kind of legal action against the trust, for all sorts of reasons but mainly because of assurances I've received from them and lengthy discussions with people at UCLH.

I have a very clear idea of what happened now, and understand how the safety protocols that are already in place caught the problem before it became a real issue. Without going into huge amounts of detail, it was human error in the lab, which became evident through existing safety checks. I have received a number of apologies and will be getting written feedback.

I have my first double dose of GSCF injections tonight and a collection on monday.

@Dai, your story was truly spine chilling, I don't think I would have been able to prevent myself from punching him on the nose.

again many thanks all round.

Tom

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