[peterlParticipant]

Before I see my consultant next week, I wonder if anyone can help me (those who have been ‘through it’) regarding the way results are interpreted, after initial treatment ends –  that leads to a first ‘remission’ period, being agreed by the doctor.

This is specifically related to lambda FLCs myeloma and assumes the kidneys are working reasonably well.  I was diagnosed in April 2015, aged 66, male and have been on Velcade, dex and thalidomide for treatment.

I understand that the number of  Kappa FLCs for a normal healthy person is in the range:        3.3 to 19.4 mg/litre of serum.

And for Lambda, it’s    5.71 to 26.3 mg/litre.

And the ratio:  Kappa/Lambda is   0.26 to 1.65

If after the treatment ends, and my results lay within these ‘permissible limits’ – does anyone know whether this constitutes the basis for remission?  Or isn’t it as simple as that?

Any help would be much appreciated, before I see the medical experts.

Peter L

[hcp1Participant]

Hi Peter

I was also diagnosed in April this year with lambda light chains myeloma. Your understanding of kappa/lambda light chains and the ratio is exactly right as I understand it. I also had velcade thalidomide and dex as my treatment for 4 months (I also had one month on just velcade and dex at the start and thalidomide was introduced when my kidneys had improved).

I was told that a reduction of 90% of the lambda light chains would be a very good response but the word remission was not used. I did achieve a reduction of over 90% going from 3,500 to 291 lambda light chains over the five months of treatment. Bone marrow biopsies showed my abnormal stem cells had dropped from 55% to 15%.  A stem cell transplant is now planned to try and improve this further.

I had enough stem cells harvested for one stem cell transplant on Monday and Tuesday of this week. I am due to go into hospital on the 16th November for high dose chemo and transplant. From what I understand, a bone marrow biopsy will then be performed (100days after the transplant) and then I will be told what level of response I have achieved. If you look in the MyelomaUK publications list there is a booklet on HDT and Autologous SCT. On page 38 there is a chart that outlines different responses to treatment ‘how do I know if my treatment has worked?’

From what I understand remission is the period of time that follows treatment and provides a period of time where you are treatment free. I don’t believe it is possible to accurately predict how long each of us will be in remission.

I hope this answers your question. I know there are many far more experienced people who will read this and hopefully they will correct me if I have got anything wrong!

I wish you all the best

Helen

[peterlParticipant]

Hello Helen,

Thanks so much for your post.   And I’m glad that my understanding closely reflects yours – that gives me confidence that I’m on the right lines at least.

I’ll get hold of page 38 of the guide (HDT/SCT), and see what it says.

You said that after the initial 5 month treatment (VDT), your Lambda LCs dropped to 291 – that’s brilliant!  And that your abnormal stem cells dropped to 15%,  (as shown by bone biopsies).  Again, well done!

Can I ask how many biopsies you had for this, and were they taken from one area, or different locations?

I get the impression (from my hospital oncology nurse), that my particular team don’t use the ‘remission term’ now – they call it plateau (ing).  I’ve no idea if this is a general thing, or just particular to my hospital.  I’ll ask next time I see her.

Thanks again, and best wishes,

Peter

[hcp1Participant]

Hi Peter

You’re right! I should be pleased my lambda light chains are down, it just seems such a long way off normal though!

In answer to your question. I had my first BMB in April when I was first diagnosed and the second one on September 6th at the end of my VTD treatment. I guess this was so they could measure my response to the induction treatment. Both biopsies were taken from the Iliac Crest (I had to google this to get the correct terminology!) the pelvis.

I have also heard the term plateauing. I think the courses of treatment will only achieve so much. We will all therefore have different numbers/ratios etc at the end of our treatments (depending on where we started) and plateau at different readings of light chains/paraproteins/abnormal plasma etc. so we shouldn’t compare. I have repeatedly been told that it is my individual response that is the most important statistic NOT the ‘numbers’ I achieve.

best wishes

Helen

[peterlParticipant]

Hi again Helen,

Thanks for the information.  And the advice re: ‘individual responses’, which I completely accept, and I’ll use it ‘sparingly’.

Many thanks again, and best wishes for the future,

Peter

[jillsParticipant]

Hi Peter,

I may be wrong but I thought it was only called true remission if your PP and LC numbers went to zero, otherwise it is called achieving a plateau. My Mum has only ever achieved a plateau where the numbers have reduced and then stabilised so treatment has stopped for a while – her numbers never got to zero. However, the plateaus have been fine as she has felt well during them!

Take care,

Jillx

[peterlParticipant]

Hi Jillx,

thanks for your post.  I’m sure you’re right in what you say.

Funnily enough, I saw my oncology nurse yesterday for a chemo injection and asked her if the light chains fell to within the normal limits (max value about 26 for the lambda LC), whether it qualifies for a ‘remission’.  She said it would be up to the consultant, but added – that in all her years working with myeloma patients, – she has never seen them fall to zero!

I see the consultant next week.

Thanks again for you reply, and it’s great to hear that your Mum is doing so well.  Best wishes,

Peter

[langdaleParticipant]

My consultant said I was in full remission with “normal” light chains and zero paraproteins, which suggests that light chains are normally encountered in blood. I have just had a stem cell harvest and waiting to go for my transplant. Hope this helps, Dave

[hcp1Participant]

Hi Peter

Since my last post I have attended the MyelomaUK Info day at Birmingham. The consultants who spoke gave the message as described by Dave and Jill. If you are interested their PowerPoint presentations from that day can be accessed by selecting ‘how we can help’ > ‘patient and family info days’ > ‘past info days’ > then select West Mids Info day 17th Oct and then at the bottom of that page you will find the presentations available as a download. Most slides may not make much sense without the speaker! but there is a slide on definitions in the Initial Treatment presentation. It was an excellent day and I would thoroughly recommend attending.

Jill

I believe I am unlikely to achieve remission after my stem cell transplant but hope to plateau like your mum! Do you mind me asking what her percentage of myeloma cells she had in her bone marrow and the number of light chains (if this is relevant to your mum)? Please do not post this info if you don’t want to I am just interested to know how high these numbers can be and for it to be possible to plateau for a period of time.

Dave – great news on your results. Good luck with the transplant.

best wishes

Helen

 

[peterlParticipant]

Dear Helen and Dave,

Thank you for your posts.

Dave:  you said your consultant told you,  “you were in full remission with “normal” light chains and zero paraproteins”.  This to me at least seems a very practical and sensible statement to make, since you have no PP’s and your light chains are within spec.

My confusion arises (and it’s probably me, trying to get the definitions correct in my own mind before seeing my consultant), because of what appears in various publications.  Helen for instance kindly referred me to page 38/39 of Myeloma UK’s booklet on SCT, where responses to treatments are defined.  I’ll list the top 3:

Stringent Complete Response – no detectable PPs, normal free light ratio and no myeloma cells in bone marrow.

Complete Response:  5% or less plasma cells in bone marrow.  No detectable PPs.

Very Good Partial Response:  90% or greater reduction in PPs.

So somehow, in the top response, the myeloma cells have to be counted in the bone marrow as well??  And the word “remission” doesn’t appear anywhere in the table.  So I’m still slightly confused.

Helen:  Thanks for the links to the Birmingham .  I did download them, but as you say, it’s a bit difficult to completely follow them without having the advantage of being there.

Thanks again,

Peter

[langdaleParticipant]

Dear Peter, I suppose I must be in the Stringent complete response category as there were no detectable myeloma cells in my bone marrow either. regards David.

[peterlParticipant]

Dear David,

Yes, that is a brilliant response, and you tick all the boxes!

Sorry, I didn’t realise from your earlier post that you also had one, or more, bone biopsies to detect the myeloma cells in your bone marrow, in addition to the usual PP/LC blood tests.

Well done on a great result, and best wishes for your forthcoming transplant.

Peter

 

 

 

 

[peterlParticipant]

Hello again Helen,

I’ve now had time to look more closely at the slides from the Birmingham Info day, and on the ‘Initial Treatment’ section that you suggested.

As you say, without being there, it’s much more difficult to understand what the slides are trying to show, but slide 14 (Role of Auto’ Transplantation) was a bit scary to me when I read it.

It seems to imply that there’s not much survival after 60 months???

I’m assuming that this figure includes subsequent treatment after a first/subsequent relapse, and that since the dates: 1996 and 2003 are quoted – the slide is based on fairly old data?  Let’s hope so…

Peter

[langdaleParticipant]

Dear Helen and Peter
<p style=”text-align: right;”>I was diagnosed February 2015 and my GP quoted 50% survival rates adding that he thought current estimates were better and that I was as likely to die with it as from it. The Myeloma UK news sheet from a few months ago quoted Myeloma survival rates had significantly improved quoting ONS publication. Looking at Table 3 of the ONS 2013 survival rates breaks it down to age ranges as well as averages so for me at 66 my chances of surviving for more than 5 years is 63% (Ave.53%)but for 1 year is 90%. I think the words 5 years means more than 5 years. Hope this helps but it might be better to both look at the ONS web site and possibly ask the speaker to clarify which data he/she is using.</p>

[hcp1Participant]

Hi Peter,

The slide that you refer to was used purely to demonstrate the improvement in survival rates over a number of years. This is very old data and I believe further improvements have been and continue to be made. Although it is really tempting to try to predict our future there are no statistics out there that refer to our individual circumstances. I am trying hard to take all statistics out there with a pinch of salt and concentrate on my individual readings/results and to trust in my consultants understanding of them.

Also, from my understanding, these statistics include all myeloma patients who have died, irregardless of cause of death. Therefore as the median age at diagnosis is around 70 years old they include a percentage of people who have died from non related myeloma conditions.

I just reread your first posting on this page. I think your appointment must be this week? I hope it all goes well for you.

best wishes

Helen

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