Dear Scotty,
Thanks for sending the link, but it hasn't arrived at my email address. It is evayouren@lineone.net
I'm ok at the moment. Was dx in May 2008 and had CDT for about
three months, then an autologous transplant. I was in complete remission before the transplant.
After the transplant my paraproteins went up for three months then returned to zero and stayed that way for a couple of years. At the two year mark after transplant, there was a faint band of paraprotein, suggesting something was up. Six months later my left arm shattered very painfully due to lots of myeloma cells in the humerus. I had an operation with pins put in and I can use the arm now.I went for a second opinion to the London Oncology Centre with Prof Ray Powles. He did a pet scan and verified that I had over 70% plasma cells and that my myeloma had evolved, so I was becoming an oligo-secretor( extremely low m-spike).My remission was clearly over.
I had suspected that my arm might go and that I was becoming a very low secretor but my Scottish consultant in Edinburgh said this was highly unlikely and wasn't prepared to do a freelite test. He also sent emails to my other doctors saying that the pains in my arm had nothing to do with myeloma. This stopped me from getting help just before my arm shattered, which I must say was just as painful as childbirth and happened in the Highlands so I had to go to hospital in a helicopter while screaming in pain. They couldn't give me pain relief as there are rules that you have to administer it via a vein and the paramedics couldn't get a vein to appear.
Anyway, that's when I decided to go for a second opinion to London. Prof Powles verified that my suspicions about becoming a very low secretor were right. He agreed to put me on Thal and Dex again because that's what I wanted. I've had freelite tests to monitor the situation. I was on both for eight and a half months and bone marrow biopsies showed plasma cells were diminishing. I was taken off dex as my face looked like a gerbil and I had added a lot of weight. We continued with the Thal a couple of months longer. I seem to have reached a complete response. I am still on Thal 100mg a day as consolidation and we send my bloods to London at intervals. My insurance is paying as the Oncologoy Centre is private.
I am still fat; dieting quite stringently for two months has led to a loss of just two pounds! I think the body has adjusted to the lower calorie intake. I have always been very slim so this is difficult for me. Flying to London is not easy as we live in the Highlands most of the time and I have to stay with friends when in London. It distresses people to see me struggling with the effects of chemo so I find that embarrassing. The first time I went to London, Prof Powles insisted I stayed for eight weeks. We couldn't afford a hotel and I probably traumatised the friend I stayed with, especially when going through dex withrawal symptoms each cycle.I am not so keen on seeing the Edinburgh consultant again even though we have a flat in Edinburgh. He would get quite angry when I asked for a freelite test or said I might be becoming a low secretor. We can't sell our house at the moment because of the economy and I'm probably too ill to arrange it, so I will try to continue to fly to London every three months and look for friends to stay with as long as I can cope.
I have no idea how you are – perhaps once I get back onto the Under Fifties site I'll find out.
Very best wishes,
Eva
