Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
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!
Welcome to this corner of the forum although I am really sorry to read about what you have been through - you have certainly been through a lot.
I was also diagnosed with the kappa light chain version of myeloma and I’m so pleased to see your results - those are excellent!
I hope you’ll find a lot of great support here and please stick around to let us know how you’re getting on.
What is a Community Champion?
Hi Greg and thanks, I am aware of your experience and glad you’re doing well after your SCT and continue to do so. Yes I am delighted with my results which means for now no more bone damage is being caused, thankfully MM did not have any affect on my kidneys at all either. Next big thing will be SCT and for me the anxiety of hair loss. I will continue to keep you updated. Thanks for your support xxx
Safe payments by:
We're here to provide physical, financial and emotional support. So whatever cancer throws your way, we're right there with you.
© Macmillan Cancer Support
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man
(604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company
number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: