Hi Paul,
I'm on the same treatment. Velcade seems to be very drying: I have to moisturise my hands many times a day and the surface of my eyes requires frequent applications of eye drops like Murine. I drink enormous amounts of water. I've finished my third cycle. There was one day when my eyes stung so much that I had to stay in bed with my eyes shut as I was so deeply uncomfortable.
I think this treatment is quite heavy, but you notice the toxicity more as the cycles mount up. I am occasionally up all night after steroids, and I have steroid withdrawal when I'm very weak. The dose of Cylcoph. makes my bladder very tender for at least forty-eight hours. During this time, I'd have a lot of trouble sleeping because of a sensation that I need to pee. The only thing that helps is a paracetamol which deadens feeling for about four hours at a time. This might have to be checked with a doctor if kidney function is poor. Mine's ok atm. If you get a proper bladder infection you'll need to go so much you're likely to get help fast. Any infection, anywhere, probably requires at least a phone call to the GP surgery. I have been give antibiotics I can start taking if an infection kicks in.
I don't want to sound pessimistic about this treatment. I have a large calendar into which I enter side-effects and what I do on each day. I can then look for patterns and even make predictions about how I will be; when I will be able to have a visitor or cook a complex meal. I try to have activities planned for each stage of the treatment and what it brings with it and have been able to do things that are engaging and engrossing. I try to go for a walk, or run up and down on the spot three times a day, but there there really are two days of the dex withdrawal when I just lie there reading a book.
By the way, there's a mouthwash called Biotene which is meant to add enzymes and hydrate the mouth. Don't hesitate to use all the meds your doctor allows. I have Acicvlovir for viruses, fluconazole for fungal infections like thrush, Xantac for heartburn. You should be checked for a sinus infection. My nose runs quite a bit at certain stages of the cycle, but I've had few colds.
Best of luck,
Eva
