Multiple Myeloma Support Group

Hello Doug -
I had Velcade when it was first 'new' down here in Australia and went for 4 rounds. Unfortunately the side effects became horrible and I had to stop. I ended up hospitalised for a couple of months, lost 50kg (fortunately I was overweight to start!), and landed in a hospice. When I finally went home - after a month - most thought I was going home to die. Due to my wonderful husbands care, I gradually regained some appitite and started eating once again. Here I am, three years later, and although my paraprotein went up to 90 when I stopped the Velcade, I was able to start Revlimid two years ago and haven't looked back since! Now my paraprotein is only 6!!
The think with all of these drugs is that they are so individual - what works for one person is useless for another. Hang in there until you find the drug that works best for you!!

had a bone marrow transplant in 05 done great,3 years remission,then relasped in nov 08,started velcade and dex just finish my first cylce,start another one on the 26th,i am very tried all the time but i found my eating is starting to ge alot better,but the pain is still really bad sometime...some day are good others not ,do not no much about this drug i really,need to learn to ask more question, but sometime i dont; like to hear the answers i am going to be given...but latley i been checking it out. i no there is neg and pos...to thing but .i just need to let it takes it course ,if anyone has anything they can tell help me no about this velacade i would really appericated ,thank you and god bless

Sorry Doug, but my experience with Velcade has been the opposite of most of these other people. I was on it for about 5 cycles before I ended up with the worst headache I've ever had. I was promptly put into a major cancer hospital in this State and it took a week before the headache became bearable - but it did not go away. Of course, the Velcade treatments stopped. I was then transfered to my local hospital where I stayed for a month because along with the headache I could no longer eat, I was losing weight very quickly and everyone thought I was dying. Ultimately I lost 50kgs - which is huge! But thankfully I was overweight and had the weight to lose! I was then transfered to the hospice - to try to get the pain medication right as well as to get me eating again and I stayed there for almost a month. I decided that if I was dying I didn't want it to be in a hospice and discharged myself home - all the staff are still surprised when they meet me in the street as they all thought I was going home to die!!

Fortunately my daughter and husband were able to devise a system that got me eating again and gradually, over 3 months, I started to regain my health. I was totally dependent when I came home from hospice - to the point where we had a comode at the end of my bed and my husband had to lift me onto it when I needed to use it -- I couldn't walk to the loo!! That became my first challenge and goal - to walk by myself to the toilet! It took me almost a month, but I finally made it. I won't go on with all the trauma I had to get back to being semi-independent, but it was the Velcade that nearly killed me! I was off all medication for almost 6 months, but my paraprotein kept creeping up until it got to 90!! Something had to be done and so I was granted - on compassionate grounds - Revlimid. That has been a whole new story, but the outcome has been that Revlimid has been my Saviour!! I am now alive - 2 1/2 years later and have a near normal quality of life. Of all of the chemo drugs that I have tried - VAD, Cyclophos., Thalidomide, Velcade, and Revlimid -- the Velcade was the worst for me. Yes, it brought my paraprotein down and kept it there for 4 months but I had a whole heap of side effects including severe painful neuropathy in my hands, nausea, constipation, and the mother of all headaches, extreme exhaustion, pain in my legs when walking, etc. I know that Velcade is a miracle drug for many people, but it was certainly NOT for me! Cheers, Cath