My husband had CTD first followed by SCT and got total response disease undetectable, but only for 1 year. He had 4 cycles of velcade and again total response. NICE says leave it there and wait for it to come back. But 2 doctors have completely disagreed with NICE with one suggesting jumping straight to allo transplant and the other stretching…[Read more]

I’ve been following this topic with interest. I absolutely believe that here in the UK access to treatment should be on needs and not cost. However if CDT works as a frontline and is cheaper than velcade initially then surely using that is a good idea. Paracetamol is still used in hospitals as a frontline pain killer because it works and it…[Read more]

Hi

I wonder if it is worth you asking a couple of questions:
Firstly why you can’t have the results and secondly if you can change consultants.

It sounds like you are getting an extremely raw deal compared to most here and that is simply unacceptable.

In my job – which is entirely non medical I have to give advice to people. I often know…[Read more]

Hi

Can you see if you can arrange for either a Macmillan nurse or a counsellor to visit him to discuss his views?
I am sure after so much prodding and poking he is thoroughly fed up with medical matters, but maybe a bit of time may give him space to think clearly.

He is lucky to have your support. I hope you are both strong to support each…[Read more]

Hi Everyone

It is my husbadn who suffers the MM not me, I’m just here for the ride!!! We see 2 consultants in 2 hospitals – the Royal Sussex County Hospital and the Royal Marsden. We are happy that we see them both, get them to talk to each other and to us, and formulate a plan of action.

I am absolutely with Dusk, Eve and everyone else here…[Read more]

Hi eve,
Thanks for asking. He’s had 3 full cycles of CVD and is responding well, he’s been allowed to drop the cyclo and reduce the dex till the end of cycle 4.
We’ve had a bit of a difference of opinion between the doctors: one set wanted him to go straight to an allo, one said stay on drugs. We’ve compromised in that he’s going to have the…[Read more]

Oh Eve, I’m so sorry. The roller coaster’s not over yet and your still strapped in. I hope you get a gentle ride for a while.
I’ve typed and deleted many responses to you and can’t find the right words so I shall just say I am thinking of you both and sending you love.

Hi

My husband was diagnosed after snapping his femur do the first few months were spent coping with that as well as the diagnosis and chemo etc. he had CTD then SCT but relapsed after a year. He didn’t work the first few months but has been full time since 3 months after the SCT. I spent the first 3 weeks by his hospital bedside and again when…[Read more]

Hi

I would persevere with Macmillan. My husband got a referral to them through his consultant. Speak to his consultant's secretary / nurse manager / assistant – whoever you need to. It may also be possible if your hospital has a cancer centre that they will have Macmillan counsellors attached and can give you a direct number. Good Luck.

Hi

I'm an MM wife, and wanted to give you my perspective. My husband was diagnosed almost exactly 1 year ago. He snapped his femur. Since then he has has CTD and an SCT (oh how we love initials) and is currently in full remission. He is 47. We have 2 children, 11 and 8. I am 40.

I am desperately sad and angry that this terrible…[Read more]

My husband managed to get his on presciption as his head had gone all flaky when his hair fell out after the chemo for the SCT. I just have to work out how to prise it off him!