[cjleedsParticipant]

Started DRd after third injection and Dexamethasone I think my blood sugar went up ,after Dexamethasone high I was still tired getting up in night to go to loo and I’m loosing weight .ive had my fourth treatment but dexamethasone high still in effect. I’m seeing my consultant today but I’m worried that this may leave me unsuited to this longer life extending treatment anybody had a similar issue

[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.

[cjleedsParticipant]

Hello again,
Firstly a thank you to Glenc and David for their responses.
I met with one of the consultants at St James’s Leeds on Wednesday and although they agreed I am a relatively fit 70 year old they suggest that DRD rather than SCT would be best for me. They did say they would do a SCT if I absolutely insisted but both treatments offer potential remission for 5 years and DRD comes without the risks of SCT which they said was up to 2% or 1 in 50 at my age. Good news is my creatinine has fallen again but my free light chains are continuing to rise so looking at starting treatment in a month or two.
One thing I forgot to ask is about treatment options after DRD . I noticed from the website the sone have had Daratumumab as a second line after SCT but I need to ask what happens as a secondary treatment after DRD
Thank you all again

[cjleedsParticipant]

Hello , I’m another newcomer to the site and I’m in the process of being diagnosed. I’m 70 years old and my problem was found when I had free light chains in my plasma and urine . I have just had a bone marrow biopsy this morning which was uncomfortable but not too bad . For me the most painful part was the aspiration rather than the bone sample bit. I find reading about people’s experiences with the disease is a real help in allowing me to come to terms with what the future may hold so I just wanted to introduce myself and say thank you to everyone who posts on this forum.

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