[jane-wrenchParticipant]

Hi there – I’ve had myeloma and Amyloidosis for 18 years now – had one SCT in 1996 and one in 2001- and got 10 years remission from the last one – I know I’ve been very lucky – but when the free light chains started rising steeply  I had to start treatment again – so in April 2012 I started CVD – ostensibly for 6/8 cycles. It worked well at the beginning when I was having it twice a week, but the peripheral neuropathy was unbearable so they reduced it to weekly for a while,but I still found the pain in my feet unbearable despite trying every medication available – and eventually the treatment was reduced to once a fortnight .  The results plateaued for ages and in August 2013 my doctor suggested adding thalidomide and stopping cyclophosphamide – so since then that’s been my ‘cocktail’ – velcade, dex and thalidomide – the free light chains are going down very slowly but I’m still not in remission – and it’s 2 years now on velcade.   I just wondered if anyone else has been on it for such a long time? At the moment it’s really wearing me down! The dex has its usual effects even on a fortnightly regime – tears, insomnia and a moon face – I think my body’s had enough! Cant remember the last time I felt ‘normal’- whatever that is! Any  thoughts?

jane

[tomParticipant]

Hi Jane
And well done on your length of remission, I had CDT on my first treatment in 2009 leading up to first SCT in December same year and got 4 years out of that, I am now on Velcade (subcutaneous ) every Monday with 10 wee Dex tabs lol. My feet know am getting this treatment I have had nine Velcade injections so that makes me having 90 wee iccle tabs, all this is all being well leading up to my second SCT as and when the dr tells me am in remission and am hoping for it to last at least as long as yours Jane.

And my thoughts are stick with it Jane until your docs says he has better for you.

Love and hugs

Tom onwards and upwards xxxx

[rebeccaRParticipant]

Hi Jane,
Was surprised to hear you have been allowed velcade for such a length of time – has this been through private insurance? I haven’t heard of anyone on this site on it for so long but if you want to trawl through the Myeloma beacon site – and the bloggers on there – I have read a few who have been on it for a considerable time as part of maintenance tho’ I believe they all had the PN from it. I had it for the max 8 cycles allowed and was told would then have to move on to something different. Velcade as maintenance is growing in the US and no doubt will be trialled, as such, here at some point. Must say I applaud you for coping with it I had the max 8 cycles (taken weekly and no break) and thought I coped really well – denial of treatment effects! – but once I came off it it was as though a veil had been lifted and loads of energy released.
Good luck, Rebecca

[finnParticipant]

Hi Jane

Are you going to have another SCT? If so, and if Velcade is not lowering the PPs anymore, why are they continuing with it? Maybe your doctor has a good reason to keep you on Velcade, can you ask him? My doctor told me that they will stop using it as soon as PN becomes too painful.

[PerkymiteParticipant]

I was only on Velcade for a couple of months, I got PN quite badly and was pulled off so cannot really add anything constructive. I would tend to agree with Tom. However, why not mention Rivilimide to your Consultant, I understand it is the third line treatment, I am on it, and you have to have relapsed on Velcade I think but it is worth a mention.

Kindest regards – Vasbyte

David

[Anonymous]

If you are being treated with Velcade, your doctor will also give you medication to prevent shingles, a viral infection that causes a painful rash and is due to a reactivation of the herpes zoster virus (the virus that causes chickenpox).

[Author]

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