Hi Brenda,
it’s good news to read you achieved eight years of remission.
After five years of remission, my lambs light chains had increased to 1900, therefore I started VCD in October 2015 with a view to achieving a 90% reduction in light chain levels to be considered for a second stem cell transplant. I was initially on four, three weekly cycles which involves two weeks of treatment followed by a week off. The treatment consisted of Velcade injections in the stomach area twice a week for two weeks administered at hospital, together with cyclophosamide tablets on Mondays and Dex tablets for two days around every Velcade injection. Overall, cycles one, two and three gradually decreased my energy levels and coping with the sleepless nights of Dex can be exhausting. However by cycle four, my energy levels were really low and I felt totally exhausted which was reflected in my blood results of very low blood counts with me neuts at 0.65 and platelets at 75.
The good news is that my light chains reduced to 150 after four cycles of treatment, but following two weeks off drugs over Christmas they increased to 350. Due to peripheral neuropathy in my right leg at the end of cycle one, my Velcade injection strength was reduced to help with the leg pain. By the end of cycle four, I was in thermal socks, electric blanket at night and extra bed clothes to cope with the leg pain in the cold weather. The two weeks off helped reduce the leg symptoms.
I am currently on a further two to four cycles of just Velcade and Dex, with the Velcade injections being reduced to once a week to help with the leg pain. The cycles are now five weeks with four weeks of once a week Velcade injections and the fifth week without any drugs. For me, this regime has been much kinder on my body with my blood results showing big improvements in white and red blood cell counts, together with a good iron level, platelet count and my neuts have been their highest in the last six years. But whether this new five weekly cycle without cyclophosamide manages to control my light chains has yet to be seen.
The Velcade injections are painless and very quick, but they do cause a small red patch around the injection site for around five days which can be helped by applying hydrocortisone cream. The frustrating part of the Velcade injections can be the waiting time at hospital for a two minute quick injection. Quite often I have to wait up to a couple of hours for an available chair and appropriate member of staff to administer the injection. Your blood results also have to be monitored every week prior to the injection, which adds more time to the process.
bren 8 years, 9 months ago.
