[clarabellParticipant]

Hi Everyone,

Can anyone tell me if its usual for free light chains to increase after CTD has finished? My Dad was given a complete response to Amyloidosis and MM 6 weeks ago and FLC and PP levels had platued. His bloods are sent down to the Royal Free in London as they look after his AA (Amyloid) and they send a report of the levels by post to us, this report doesn't include PP levels. The FLC levels have increase by a third and obviously we are concerned, I am going to call the hospital tomorrow but was wondering if anyone else has experienced this?

Hope you are all well, best wishes Clara xxx

[eveParticipant]

Hi Clare
You must be worried after 6 courses of CTD then a rise in light chains,best to ring hospital tell them your worries,you will be able to see your dads consultant early.

Slim had 6 cycles of CTD seems to be on path for remission,when they took bone marrow found MM had gone up,but light chains were down:-S,left us shocked,spoke to nurse who arranged for us to see consultant out of clinic time,rather than wait wondering what was going to happen,the problem seems to be they have meetings on Friday Afternoon were they decide what comes next,so we were left in limbo for a few days.

Do not loose heart it might be just a blip,if not there are other forms of chemo,Slims now on Velcade now,and again we are in limbo as,he is not having his marrow taken again until after 4 cycle.
So it is a bit wait and see,as,MM no longer gives true reading in light chains.Not a nice position to be in,after knowing light chain readings every month.

I am getting more like Bridget if Slim feels well,that to me is a good sign so keep you chin up.Love Eve

[adminKeymaster]

Hi Clara

You don't say whether your Dad's FLC readings are still within normal range. You may remember that I am in a very similar position to your Dad – MM with Amyloidosis with not too dissimilar FLC readings at the start of treatment. I started CTD at the beginning of March, achieved complete response by the end of April (ie. Lambda light chains within normal range) and finished CTD mid August. I had my six month NAC appt and scan a week later. At that point, both Kappa and Lambda had gone below the normal range. My NAC doctor told me that had I still been on treatment, it would have been stopped or reduced, but as i had finished, it was not a concern.

Two weeks ago, I received my first FLC report after a month of no treatment at all and you can imagine my shock when I saw my lambda reading had 'shot up' from 3 to 12! Kappa was still below normal range. As lambda is the one that is the problem I was beside myself with worry and in the end called the NAC and spoke to a doctor. She said this was completely normal and they see it all the time – the body is readjusting and the immune system is finding it's 'normal' level. She said that the Lambda reading had been over suppressed. Because both kappa and lambda are still in normal range, she was not concerned that the ratio was now out of normal range. She said that if lambda continued to increase significantly at the next reading, then this may be of concern, but for now, it isn't and is behaving how they would expect.

Hope this helps, but if you are worried then you are right to call the hospital.

Best wishes
Tracey xxx

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