[emmyParticipant]

Hi all,
This is the first time I’ve posted but keen to reach out to see if there’s someone who’s been in a similar situation to me. I’ve just been diagnosed with lambda light chain MM following an incidental finding on a blood test – the most recent result was Kappa 11.8mg/l, Lambda 1600.4mg/l – ratio 136. The bone marrow plasma cell level was 15%. Other results are normal at this point. I have no symptoms atm. Officially my FLC ratio in addition to the plasma cell level mean that I have MM and therefore can begin treatment or be closely monitored. If I decide to go ahead with treatment now I could join a trial (RADAR) or have the standard NHS treatment (chemo plus stem cell transplant). Has anyone else found themselves with this decision? I’m 51 and working.
Many thanks in advance!

[shaun3Participant]

Hi Emmy,

I was diagnosed with MM aged 53 which was 5 years ago. I’ve since had two stem cell transplants and whilst I achieved complete remission for 4 ½ years I’ve recently relapsed. The second transplant was from a donor which is not standard NHS treatment. Very happy to discuss my decision making process if helpful?

Shaun

[emmyParticipant]

Hi Shaun,
Thanks for sharing – I’m sorry to hear about your recent relapse and hope there’s a new treatment plan available. It would definitely be helpful to understand your decision process especially if you were symptom free / in good health at the point of diagnosis. A big part of me feels I want to just get on with treatment while I’m fit and healthy but don’t want to make the wrong decision.
Best, Emmy

[shaun3Participant]

Of course, my email address is shaunstaines@me.com it might be easier to switch to email?

[graham-cParticipant]

My own experience has been complex and confusing. I have been deemed to have MGUS for nearly 10 years with no excitement. Appointments have been euphemistically referred to as telephonic, but no one ever calls. Since I normally get a print out of results in a month I have been relaxed about it.

The Christmas before last hysteria broke out since Haematology had tried to call me and discovered I was in hospital. No one told me what was going on and, even now, the best I could discover was that my kidney (I only have one) was in trouble.

Last year I was getting the same ‘silent’ telephone appointments but I pointed out that my lambda light chains were at 571.2 with a ratio of 0.02 and they wanted to see less of me. I also noted that where my eGFR had been steady at around 60 for years it had declined to 47 and is currently at 38.

Though I am normally placid,close to being comatose,at my last test the one thing they didn’t do was my flc. As a reward I am issuing a Subject Access Request and will do so every time I don’t get results.

The risk to me is Light Chain Deposition Disease and there are set criteria for referral to Nephrology laid down by NICE. If I have to do it through my GP I will. IF I get a phone call this time I’ll mention it.

[cjleedsParticipant]

Hello Emmy ,
I was diagnosed with lambda light chain myeloma last August following a routine blood test. My situation is totally different from yourself however as I am a relatively healthy 70 year old. My lambda light chain levels were 481 and kappa 6.3 ratio 0.013. Bone marrow showed about 60% abnormal plasma cells and I was classed as an active smouldering MM. My creatinine levels since that time however have been very up and down and are now staying above normal range and my serum light chain levels are continuing to rise , now over 1800, and haemoglobin dropping slightly. It has been decided time has come for me to start first line DRd treatment ( because of the kidney problems) which I will be doing soon. I will post on here how this goes.
Sorry for the rambling reply which probably doesn’t help you very much but I wish you well. I find people on this forum are very helpful and supportive.

[graham-cParticipant]

cjleeds – you mention kidney problems in your post and I would be interested to know whether or not any treatment or medication has been prescribed for that.

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