Well after 8 months of scans and blood tests, and a bone marrow biopsy, I was finally diagnosed on the 9th July with Kappa Light Chain myeloma. My LC were 2700 on diagnosis. Lyctic lesions were seen on my scans from the very beginning but my paraproteins were normal and they didn’t consider a serum free light assay test until the first week in May! I didn’t hear any for months and then out of the blue I received a letter asking me to see the haematologist on the 26 June. I called my consultant who said that my blood test had shown that my FLC were significantly high and MM was a likely reason. The next day I saw the Haematologist Consultant who used words like it was probably/most likely and then did an extensive list of bloods and arranged for my bone biopsy the following week.
The following week 9th July, I had a follow up appointment which confirmed MM, but my full bone biopsy results were not available. The treatment plan was given chemo, velcade, steroids and thalidomide for 6 cycles. As well as monthly infusions of Zometa for the next 2. I will also be eligible for a SCT.
On the 11th July I was experiencing severe back and pelvic pain which lasted days and then by the Monday the 15th July I was almost crippled in pain, screaming out at the slightest movement, couldn’t lay down and to sleep in a chair. The next day I had an appointment with my Haematologist, I had to have a wheelchair into the hospital and the consultant was extremely concerned what a difference a week had made and immediately admitted me into hospital. I was in for two weeks for pain management and tests following numerous scans and blood tests, they identified a significant increase and extensive lyctic lesions on my spine, pelvis and thigh bone, although thankfully no spinal cord compression which was a major concern.
I was started on my treatment on the 19th July and I am currently on my 3rd cycle. Today, 13 September, I received amazing news that my Light Chains have reduced from 2700 to JUST 10!!!! The normal ratio being 20! The Dr said that they will bring my transplant sooner and that 4 rounds of chemo treatment will be sufficient.
I am still experiencing back pain, weakness, and all the other side effects caused by the treatment, such as mild neuropathy, dizziness, loss of taste, constipation.., I could go on!
Apologies for the long story!
