If anyone out there has experience with Velcade for Multiple Myeloma (MM) I would love to hear from you with some advice.
I have been on Thalidomide for 2 years but my tumours have grown and are getting out of control. Worse, they have spread to my head and other hip.I already have them in my shoulder, left hip, several ribs and spinal cord compression. I am only 53.
I start Velcade next week and I am concerned with the side effects.I have already had chemo and radiotherapy and a bone marrow transplant a couple of years ago but was told that Velcade is different to all of these. Also I found that I was allergic to Dexamethasone (that's a good thing) and the BM transplant nearly killed me. I was very close to death from it.
What can I expect?
Also if anyone has tumours on their skull from MM, what are your symptoms and side effects from that? This scares me the most as I have started getting headaches for the first time in my life and am getting very forgetful and confused.
If you have MM or have dealt with this PLEASE help if you can.
I have had two treatments with Velcade; one very good remission and one partial remission. Each bought me a year or so in which I was not in treatment. I am about to start a different treatment as Velcade is seen to be progressively less effective in my case. I don't know what I will be on. I am seeing the specialist who collected my stem cells and I may be having a transplant if other treatments are not successful.
I was pretty comfortable with Velcade. I did not experience many side effects at all. Early on maybe, but by the second or third course we had adjusted the dex and it was all okay. The last treatment I had was without dex altogether.
It's quick to administer, there is no hanging around with drip lines . All I can say is that compared to the chemo and the thalidomide I had before it, Velcade was comparatively easy to manage. I am 58, was 53 when I first had Velcade.
Good luck with it.
Thanks so much for your reply. The info was very helpful and it relieved a bit of stress for me.
I was lucky to have minimal side effects from the Thalidomide so fingers crossed the Velcade will be kind to me as well. As long as I stay clear of the Dex as much as possible it should be fine as I react very badly to the Dex. Dangerous reactions. It's a nasty drug that should be prohibited.
Good luck with your new treatment. I hope you get positive results from it.
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.