[SalParticipant]

Hello!

I wonder if anyone has any advice to offer. My husband is on induction treatment of Velcade, cyclophosphamide and prednisolone. He had blood tests after cycle 2 (has routine ones every week, but these were the specialist light chain/paraprotein ones) and saw his consultant yesterday. Unfortunately it was the first appointment I’ve had to miss as I had a work meeting that is central to my job and I need to keep the good-will there – but that’s another story.  Light chains are virtually unchanged – just over 1000, and the paraprotein is only down 3, standing at 26 when this blood was taken.

We had been told that the results at this stage probably wouldn’t show very much change, so I wasn’t expecting anything dramatic – although somehow you always hope for that miracle, don’t you? However,  the consultant was baffled that there wasn’t more change. He’s looking for a 50% decrease in PP by the end of cycle 4. It doesn’t help that the results are always out of date when we get them as they have to go to a specialist lab and take 7-10 days to come back.

This has now given me something new to worry about, of course! M is nearly at the end of cycle 3. He’s coped really well with the Velcade.  I would have asked lots more questions had I been at the appointment, but, recognising that everyone is different, I’m wondering what all this might mean. Any ideas?

[rebeccaRParticipant]

I think it is very difficult to comment as everyone is so different in MM and how they react to treatment. I had velcade/dex and the 1st cycle reduced my light chains 1120 at starting) by about 80% the biggest hit and then it was very gradual and eventually got 94% reduction from it. Velcade is known to be very good for light chains and my consultant said it worked on me as expected and that the biggest drop is generally at the beginning. It is considered an effective drug for most and believe if you do not achieve a 90% reduction in 6 cycles the NHS gets there money back.
Regards Rebecca

[finnParticipant]

Hiya

I was told by a number of people that Velcade is a wonder drug, and I was very disappointed when it did not work that well for me! After 5 cycles my doctor changed it to lenalidomide, which reduced the PPs very nicely. Luckily there are many drugs to try even if one doesn’t work!

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