Rabbit – Thank you for your reply. I’m sorry to hear you couldn’t proceed with the SCT, but it sounds like you’re doing really well on your first line of treatment! Regarding your question, the doctor didn’t mention how many copies of 14/16 my mum has–is this worth asking?
RebeccaR – Your message gave me so much hope. I’ve been holding onto it! I know every MM case is different, but your words have really lifted my spirits, so thank you.
Tony642 – I appreciate your reply. Mum isn’t on dialysis yet, but she’s been told there’s a high likelihood she will need it in the future.
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I received the doctor’s written review note. If there are any further words of advice or help with understanding, I would greatly appreciate it. Thank you so much to Rabbit, RebeccaR, and Tony642 for your support.
Diagnosis:
– IgG lambda myeloma, ISS stage III with acute kidney injury.
– Baseline IgG lambda paraprotein: 32.2 g/L with free lambda light chains: 5108 mg/L.
– FISH results: t(14;16) translocation and gain of 1q, indicating ultra high-risk disease.
– Whole-body MRI: Hypercellular marrow with discrete focal lesions at T10 and L3, and patchy foci in the ribs.
Comments:
– Light chains are now completely normal after 3 cycles of Daratumumab VTD
– Low-level paraprotein less than 3 g/L, in keeping with a VGPR overall
– Kidney creatinine steadily fallen from 600 to 300 but now in plateau. Significant likelihood of needing renal support in future.
– Response is ‘excellent’ so ready to proceed with the next stage of treatment–autologous stem cell transplant with high-dose chemotherapy
– European Myeloma network EMNO2 study indicates benefit of tandem autologous stem cell transplant for high-risk myeloma including the presence of t(14;16).
– Median duration of response is around 3-4 years including longer term Lenalidomide maintenance.
– SCT harvest will aim to collect sufficient stem cells for both the tandem transplant and potential future transplant given it’s likely to recur.
She has completed the pre-SCT eligibility tests and we are awaiting final results to see if she can proceed. We are both taking each day as it comes and enjoying the time we have whilst she feels healthy. Thank you all.
