Dear Sharon,
I am occasional visitor to this site so I saw your post only this morning. I was very sorry to read about your illness and hope that my own experience may help.
10 years ago, also at the age of 49, I was diagnosed with myeloma. My main symptom was the sudden onset of double vision, which was the result of a mass at the base of my skull pressing on a nerve. My path to diagnosis was unconventional but I quickly arrived under the care of Professor Kwee Yong and the haematology team at UCLH. They were wonderful. I quickly learned that I had an unusual presentation of the disease, and that the blood brain barrier was an obstacle to conventional treatment. I was admitted as an inpatient and received high doses of two chemotherapy drugs more often used to treat leukaemia – idarubicin and cytarabine. I understand that both can pass the blood brain barrier. The effect of the treatment was quickly visible: my sight began to return to normal within a week or so. However because of the high dose I was in hospital for many weeks.
Subsequently my case was written up in a paper so the precise details of the treatment should be available to your doctors via that route.
Some months later I received a stem cell transplant, radiotherapy and consolidation treatment and I remain in remission all these years later.
I hope this helps,
Annie
