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SIMS 10 years, 11 months ago.
A question for anyone who is better informed that me (which is most people!) I can see a lot of emails mention light chains, with various levels being mentioned but I haven't seen many people mention light chains at the level my Mum's seem to have been – up to 10,000. Despite this her kidney function is perfectly normal, I don't really understand how this can be? I can see some of you have concerns about light chains being in the hundreds but Mum's have always been in the thousands, I think the lowest reading was about 1,500 when she was on CTD about 4 years ago. Don't claim to understand it and have not managed to get a sensible reply out of her consultant so any light anyone can throw on this would be helpful!
Thanks
Jill
Hi Jill
Sorry I can't help you re light chains, but I am sure someone can. Have answered to bring your question to the top again.
Best wishes to you and your Mum.
Mavis x
Hi Jill,
I'm afraid I can't help except to say Phil and I have wondered the same thing about paraprotein levels. Phil was diagnosed with a pp level of 32 and extensive bone damage but we have read about and met people with much higher pp levels but with no bone damage.
As with everything with Myeloma is seems that each individual is different.
Megan
Hi Jill.
Before starting treatment for MM (I was diagnosed with 'Secondary Bone Cancer – Primary Unknown' 14 months previously back home in Wales – but that's another story. I was tested for MM but they only looked at my PP's. They needed to carry out a 24 hour Urine Test… but that was overlooked and MM was dismissed. It wasn't until I made a break to Nottingham that I was properly tested and diagnosed as having MM.:-)
At the start of treatment my Kappa Light Chains were at 3,800, which was considered quite high but they dropped to 0 after only 3 Cycles of CDT… I had 4 Cycles altogether before being declared ready for SCT preparation.8-)
Before my current treatment (Velcade MkII – I had previously had 6 very successful Cycles of Velcade in 2011, so without any further available treatments we plumped on Velcade because of its previous efficacy) my KLC's stood at 3,087 and they dropped to 380 after one Cycle and stand at 125 after Cycle 3… up slightly from Cycle 2's 39.
Your Mum's 10,000 KLC's seem excessively high to me but if the medics are not too concerned then I would tend to go with the flow… there are other factors and ratios to take into consideration and they must be holding things in place as far as I can see, But in my case, offering any sort of advice apart from personal experience, would be highly dangerous – so if I was you I would ring Ellen or one of her stake and explain your concerns… I am sure their advice will be telling and reassuring.8-)
Regards and best wishes
Dai.
Mavis, Megan and Dai,
Thanks for replying. I should have said that Mum has Lambda light chains (not Kappa), and the highest her PP's have been is 36. She has no bone damage.
I think I will ring Ellen, might help me feel better informed next time we see her consultant.
Thanks,
Jillx
Hi Jill, Don't know much about the subject but I will add my 2p worth, my light chains started going up about 18 months ago and they were concerned, no treatment but a few months later I was told that they were 200, that seemed very low and we were pleased. Then another doc told us that the scale had been changed and there was no way to compare the different reading. Well as a engineer this did not make sense but the top dog said it was right, I just thought that your Mums results maybe in the old scale. Ted
Hi Jill
mine (Kappa) were somewhere over 10,000 upon diagnosis, I had acute kidney failure which is what led to the diagnosis. I got back into normal range after treatment but have now relapsed and my light chains are around 6000. I would have started treatment sooner but I have been waiting for a trial to open. Everyone is different and some get bone pain or kidney damage at far lower levels or other symptoms of myeloma which I have now like anaemia, fatigue and loss of appetite but my kidney function is being closely monitored and is ok. What are they now? They will look at your mum's blood counts and kidney function and general well being before deciding when to treat. I would advise a chat with Ellen followed by a closer questioning of your mum's consultant on the next visit.
Wendy
Thanks everyone for the helpful replies. I did speak to Ellen as suggested and we also saw Mum's consultant this morning. I raised the issue of the light chains and my confusion, he took some time to explain but it comes down to the very individual nature of the disease although in her case even he is surprised about the lack of any kind of kidney or bone problems in view of the levels of light chains she has had.
Anyway, because of her age and current reasonable health he is not keen to start her on Bendamustine or anything else until he knows more and so is arranging for her to have a bone marrow biopsy before deciding on any further treatment.
I am happy with this as I don't want her to keep having chemo treatments if there may be a gentler way to keep things under control – he did agree with this approach which has made me feel a lot better. Even though a biopsy will be difficult for her I would rather she had this than more chemo treatment which makes her feel bad and causes other problems.
The good news is no treatment in the meantime so she can carry on feeling quite well.
Thanks again for the replies.
Jill x
Sounds really good Jill I am sure you have got the right advice. Ted
Hi Jill,
I too am glad that your Mum is getting a reprieve from treatment… I am sure that it will do her the power of good. I went from Revlimid (which I still feel is an option I can return too) to Bendamustine, which, at least for me, was the worst treatment I have had to endure during my MM journey. 😛
The trouble with Bendamustine is that you need your Neutrophils to be quite strong before you start treatment, because they get knocked for six. I had 4, one month Cycles of Bendamustine, of which 3 were spent being Neutropenic and the other barely out of trouble. This caused 2 sessions in hospital due to infections, 2 of the infusions at half strength and 1 which had to be cancelled. That, and the fact that it made me feel quite ill, made me happy when the medics pulled the plug on it. It worked very well at the beginning but then caused a relapse due to the inconsistency of administration. Mind you, given the individual nature of our reaction to treatment it might well work perfectly for your Mum… but let het enjoy her rest first.:-D
Dai.
Hi Jill
My partner Colin had light chains of 31,000 when he started this journey. He thankfully had no kidney damage and only one damaged vertebrae and given what I know now I can't understand how he didn't have worse if I can say worse effects! The consultant said it was because he was fit and strong so may be your mum is strong which is a good start!
Colin's light chains went down by at least half after the first cycle of treatment and they had to check it to make sure it was right!, so it is doable. We so hope your mum makes good progress. It's a tough ol road for sufferer and supporter but be strong and whip this mm into shape 🙂
Vicki and Colin x
Please can someone explain to me what a kappa lambda ratio of 16.5 means and how concerned should I be for my husband. Does this mean he is no longer in 'complete remission'. Would be so grateful of some advice.
Hello Jill,
Light Chains of 10,000 plus is not unheard of. On diagnosis mine were 11,200(Lamda Light Chains). These came down immediately on treatment to 1075 within 2 weeks. Following the CTD programme (5 cycles) they fell to 53. They do respond immediately if the treatment is successful.
I visit the consultant once a month for blood tests and at each visit they provide me with a printout of my results.
Good luck and I hope that this helps.
Tim
Hi Jill,
I have not been here too long and I'm a bit of a novice however my Light Chains (Lambda) were 1513 when diagnosed. I'm assuming they caught mine early however I think that's more to do to do with my circumstances of collapsing with terrible back pain whilst being abroad and subjected to lots of tests in a private clinic before being airlifted home. I think all that ground work done in the Menorcan Clinic helped the Docs easily identify my diagnosis when I got back home.
Anyway, as I said mine were 1513. I was randomised for CTD and mine dropped to 26 within 18 days. They then dropped to 16.5 and the last time I went to the Hospital (1st Nov) they were basically Zero so I have had a great response after 3 cycles. I'm having a fourth cycle now in preparation for a Stem Cell Transplant in early January. However as some of the guys have said I have seen some high levels but it can be dealt with it may just take longer sometimes and you may need more cycles to bring it down.
I think this will be a common theme however I was advised to drink lots of water each day (especially because I had to stop taking Allopurinol because of a terrible rash I got on my trunk). I choose to drink filtered water and have a small Brita Tank in the Fridge. I usually drink between 3 & 4 litres per day (although I am never away from the toilet) but this flushes the Kidneys etc so for me its worth it.
Stay Strong and all the Best.
Scott;-)
I guess the danger of reading this site is that one can get worried or confused. I have now been admitted to St Richards Hospital, Chichester with severe back pain and was told yesterday that my light chains were, I think this right, LGg Kappa and were 52000. The Doctor wrote this all down for me and it was definetly 52000, considerably higher than the posts above. Not absolutely sure what means but as I'm in the ward I will ask when I see him. Also my kidneys are working perfectly.
John
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