[willjames2Participant]

Hi Folks,

It’s been. A while since my last post because luckily I’ve been feeling so well.

I got home from work tonight and I’d received a letter from the Hospital following my last 3 Monthly check up. All seems ok, however my light chains have increased marginally to about 108.

This was a bit of a shock because I’m used to getting letters confirming all is normal.

I know that the numbers aren’t really high, however I’m wondering why the hospital wouldn’t contact me in the event of an increase? And whether it’s anything to worry about currently?
Also, at what point would they consider any further treatment such as DLI from my donor?

Sorry in advance if this seems trivial compared to other more serious issues others are facing.

Kind Regards

Scott

• This topic was modified 6 years, 9 months ago by  willjames2.

[natdarke1Participant]

Hi Scott,

my mum has light chain MM and underwent chemotherapy followed by SCT in September 2015. We just found out she has fractured shoulder blade and subtly raised light chains (34). Consultant said they would have ignored increased light chains if it wasn’t for fracture so awaiting CT scan and biopsy. If anyone has any advice regarding relapse that would be good?! She was only 2 and half years post SCT and we all expected MM would behave for a lot longer as she had such a good response to treatment first time round…

your light chains don’t sound too high scott from what I know but if you have any other symptoms, worth checking with consultant?!

sorry it’s a vague reply, myeloma is so complex and different for every individual

good luck!!

 

 

[willjames2Participant]

Nat,

Many thanks. I’m going to give the hospital a call tomorrow and try and get some answers, I have also since found out that light chains can sometimes be elevated because of illness etc. I’e flu or a cold.

I’ll post back when I know some more.

Kind Regards

Scott

[natdarke1Participant]

Hi Scott,

i didn’t know that re light chains, that’s good to know for when we go back again to the hospital as mum has had a bad cough too so wonder if that could be a reason?! Let me know how you get on….

natalie

[peterlParticipant]

Hello Scott,

flcs at 108 are pretty low. I would think that the hospital never contacted you because of this, what I think, is a reasonably “low level”. I’m not sure whether you have kappa or lambda flcs, and if you look at the “healthy” range that would be pinpointed by a blood test, the lambda version has a max value of around 30. I’m away from home at the moment, no papers, so I can’t remember the units, but they’re something like mg of flcs per litre of blood analysed. But pse check, because I can’t accurately remember. The problem with this type of mm is that the criteria for relapse is, in my opinion, quite confusing. The international working party on mm has defined it, but I think over complicated the whole issue. And here comes the rub…  As far as I can see, hospital consultants (and I have a very good one at Queens in London), and have spoken to previous consultants, use a much more pragmatic approach, based on experience, other tests and the general well being of the patient. Based on my personal situation, a flc figure of 108 would not be considered, in any way, serious, but would also depend on the other factors above. Once the figure starts to drastically climb, quickly, would be a cause for concern. Because,  unfortunately, in some cases this can happen. But we’re all different. Flcs can settle in the hundreds and be stable over long periods. But frequent checks may be advisable. So, I really wouldn’t worry at all about your levels. And please check (and sound out) with your consultant what I’ve posted here. Like mm patients being all different — so are consultants — and I’ve only had experience of a hand full, so you need to test out, and have an understanding with yours, related to your particular situation. Very best of luck,

Peter P.S I’m using an iPad and hope there’s no clash with predictive texting. Unfortunately on this URL I find it impossible to revert back to nested text and correct misspellings.

[willjames2Participant]

Thanks Peter,

I have lambda light chain myeloma. I have had Auto and Ric Allo SCT’s and I’ve been in remission (after 4 cycles of CTD) since approx November 2013. I consider myself to be very lucky and coped extremely well with the treatment I had.

I have since emailed my Doctor so I’ll see what follows, however as you say, they may not be overly concerned at the moment.

Kind Regards

Scott

• This reply was modified 6 years, 9 months ago by  willjames2.

[bernardParticipant]

Hi all

I haven’t posted in about 3 years as I have been well but like Scott, my lambda has increased to about 70 and my ratio is 3 times the the high in the normal range. My oncologist (at barts) started talking about treatment options when I say him recently which was the first time this has been raised since my SCT in 2015. However he said nothing will happen yet and I see him in 3 months time do look at other markers such as calcium in the blood etc and these all seem fine. So like Scott, I guess the MM has returned but is at a low level which will not need to be treated as yet. I do remember the treatment not being fun and the sleepless nights etc, all whilst trying to work. I am 3 months into a new job which I love and it involves lots of travel and I don’t think I want treatment yet! Currently I feel fine and I am hoping that the recent acceleration in my lambda light chain marker may slow down a bit.

Good luck to all and stay positive – lots of new drugs on the market I’m told to fight this disease we will have.

• This reply was modified 6 years, 6 months ago by  bernard. Reason: Typos

[willjames2Participant]

Hi Bernard,

Since then my free light chains have receded slightly. They were within normal range for ages, then crept up to 104 and last time were down at 72. The doctor and I agreed that we won’t start treatment yet, we’ll just watch and see how it goes. He said he’s not overly concerned about the light chains creeping up, it’s the speed in which they go up that counts.

So for now, monthly checks ups and see how we go. Otherwise I feel great, albeit a little apprehensive when I have to call for my results a week after Bloods.

Onwards and Upwards!

Kind Regards

Scott

[natdarke1Participant]

Hi Scott,

I am pleased to hear that your light chains have gone down a bit- that’s good news. My mums have continued to rise unfortunately so her consultant has now talked about treatment and she will be starting VCD and then potentially another clinical trial or SCT although first SCT was particularly gruelling so we shall see what she decides to do. Its a lot to process as she had been treatment free since 2015. I am going to be attending the Myeloma meeting in Edinburgh in June so hoping to learn more then from experts who will be there.

Continued good luck and best wishes to you,
Natalie

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