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Hi all,
I’m seeking some comfort and information as I support my mum through her journey with Multiple Myeloma. She’s been diagnosed with an aggressive, high-risk strain. Her bone marrow biopsy showed 43% myeloma cells in the liquid part and 90% in the solid part. She has high-risk genetic abnormalities, including extra copies of chromosomes 14/16 and 1q21 amplification (extra chromosome 1).
So far, she’s completed 4 cycles of DARA VT and has responded well. Her MRI came back normal, though her kidney function has plateaued at around 10%. Despite this, her quality of life during treatment has been good. She’s even been able to return to the gym, doing both strength training and cardio. The only major side effect she had was to cyclophosphamide, which her doctor has since removed from her treatment plan. She’s 65 and was in good health before her diagnosis a few months ago, with headaches and vomiting being her main symptoms before the myeloma was discovered.
Her doctor has recommended a tandem stem cell transplant to tackle her aggressive myeloma, and she’s due to begin initial testing in the next few weeks.
If anyone has experience managing similar genetic mutations or going through a tandem SCT, I’d really appreciate hearing about your experiences and what to expect.
As her sole carer, I’m naturally very worried, so any words of comfort or advice would mean a lot to me.
Thank you.
Hi Silver,
Glad to hear that your mother is coping relatively well with chemo. You asked for comfort and information.
I also have high risk MM, with t(4;14) and 1q21. You say that she has extra copies of t(14;16) (which is another way of writing 14/16). How many copies does she have? 1 is relatively common, but more is possible.
I haven’t had an SCT at all (partly due to a dodgy heart which an SCT could adversely affect). Despite that, I have been in remission since June 2023 and I am still going strong following my first line of treatment.
A tandem SCT is becoming relatively unusual, as the chemo drugs have been improving so much in recent years that a tandem SCT is less necessary, even for high risk cases such as your mother’s and mine.
The SCT process is tough, and your mother will probably need your help as she goes through it, but there will be light at the end of the tunnel.
There are also many new chemo drugs that have come out, such as elranatamab and teclistamab, that are pretty effective including with high risk cases (I read research papers which say as much).
It’s great that she is keeping up the exercise. As well as the normal boost to physical and mental health, research indicates that exercise boosts the immune system (such as the T cells) that are used as part of the immunotherapy ‘chemo’ treatments such as daratumumab.
Regards
Rabbit
Hi Silver, Sorry to hear about your mum. Just thought I’d write to let you know not all is doom n gloom with high risk genetics. MM is highly individual and whilst there are predictors of high risk it will still be dependant on how it individually affects you. I have the 14:16 translocation – which is high risk to kidney damage – My light chains were only at 1120 but I was at 5% kidney function at diagnosis (am now at stable 42). After one line of treatment and an SCT (with no maintenance treatment) I remain drug free nearing 11 years on. I was given an SCt (with very low kidney function) in the Hope I’d get 18 months remission! Statistics are just a guide and your mum is not a statistic but a unique individual. Some drugs I am told can negate some high risk genetics. The translocation 14:16 is high risk to my kidney function but hasn’t displayed high risk to treating it (which is the most important thing). There are many drugs now and so many living a long life with MM almost as a chronic condition. I hope your mum is one of them and her fitness will certainly help her journey.
Rebecca
Hi Silver,
I have never known anyone who has had a tandem transplant before, but obviously the medical team consider it the best option. The main thing is to be there for your Mum when she needs it. You say that your mother’s Kidneys were at 10%, is she on dialysis? I went through both Haemodialysis and then manual peritoneal dialysis followed by automatic peritoneal dialysis, so if she needs any help with that side of things please let me know.
I don’t know if a tandem transplant is a new form of treatment or not, but if it is, it is encouraging that they are continuing to research and have authorised new treatments.
I wish her well and please let us know how you get on.
Onwards and upwards!
Kind regards, Tony
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.
Hi Silver, It is good to hear that treatment has been so successful to date. I would just like to say re kidney function – as the Mm numbers reduced my function increased every time the MM burden decreased. I plateaued at low 20s and was told they could not/would not improve further. I found my kidney function the hardest part to accept tbh. As always I sought out the success stories and got in touch with someone who told me of how his wife’s kidneys improved over time and also of someone he knew who SCTd on dialysis and 3 years later came off dialysis. My kidneys took about 5 years to gradually improve to around gfr 33 and slowly improved further to now a stable 42ish for probably the last 5 years. I don’t know why – perhaps it takes the body a long time to recover from the trauma of chemo/SCT but I do know that whilst the consultants were saying there can be no further improvement there were Mmers telling me their stories of gradual improvement over the years. Your mum is young and fit – so not the average statistic for starters. Don’t lose hope there are so many examples out there that prove the individuality of MM. I am a great believer that fitness/age gives you a winning edge.
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