Light chain myeloma D-rd protocol. Anyone has experience on this?

Maybee60bea925, that's wonderful! I am delighted for you that you have got to know 5 grandchildren.

Likewise, just after diagnosis I asked what my life expectancy* was and was told 43 months That was due to being so high risk and was based on a clinical trial. I am geeky enough that I had read about the same trial paper and had independently confirmed it.

*Geeky precision: median life span wheras 'expectancy' usually refers to the mean.

This is month 39: if my health was progressing in line with the median, I would have gone through multiple lines of treatment and short remissions, and wouldn't have much time left. Hasn't happened.

I don't know whether to credit a healthy lifestyle or sheer luck, but I'm not complaining!

Meanwhile the goalposts have moved in my favour with belantamab, teclistamab, talquetamab etc all being approved.

My consultant is saying that I have a good chance of my current (first) remission continuing for years. Chat-GPT agrees. 

Maybee60bea925, you asked if I had postponed treatment: no.

I have so far postponed treatment twice.

- When I got into remission, my priority was to have a one to one holiday with each of my kids, as something to remember me by. I didn't know that I would still be in remission in 2026. The only dates that one of them could get off work clashed with treatment day.

- Dex damaged my eyesight. Cataract surgery day also clashed with chemo day: I let the eye surgeon and haemotologist argue it out, and the eye surgeon 'won'!

My consultant has been happy for me to have a 5 week cycle  on these occasions.

Wow! 43 months, that was very precise! And totally scary to hear.

 I’m happy to hear your consultant thinks your remission will hold for years.

I have had a few breaks. I was thinking of having a second stem cell transplant. So, I had a nine week break while they tried to harvest more cells. The harvest was unsuccessful. My first thought at the time was ‘phew! thank goodness for that, as I was really dreading going through SCT again. Totally bottled it and glad decision was made for me. 

Was told would probably get 4-5 years from SCT, but looking like I will get a similar period or longer with Dara, so even happier ScT couldn’t go ahead. 

Like you I have a couple of 5-6 weeks breaks due to infection and holiday. 

Consultant is ok with occasional break for holidays as she says it is important I have quality of life.