[MothasParticipant]

Dear all

I have non-secretory, kappa light chain myeloma.

The disease presents as bone lesions with few other symptoms on progression or relapse. I was diagnosed 5 years ago and have had 3 types of treatment including an autologous stem cell transplant and on relapse revlimid which gave me 8 months remission until October last year when I developed a lesion in my ribs and my hip. I had radiotherapy in January.

As I don’t express paraprotein disease is tracked via MRi scans and light chain rises. My light chains have always been on the low side except when disease progresses and even then it’s been no higher than 200.

I have been entered for 3 trials but not been accepted due to low light chains and the fact that I don’t secrete para proteins.

After radiotherapy this January my light chains dropped from 200 to 24. So the radio has impacted on the production of myeloma at the sites it’s being produced. As far as I understand myeloma cell production occurs at multiple sites systemically so the radiotherapy may have the disease at temporary abeyance but only at a specific site. I’ve just been refused another trial for daratumumub because of my light chain reduction which is extremely frustrating. I have received no other treatment since October – 7 months.

I’d be really interested to hear other people’s thoughts and insights if your myeloma is of a similar type (bone disease)

All the best

Tom

• This topic was modified 8 years, 7 months ago by  Mothas.

[rebeccaRParticipant]

Hi tom, Sorry I cannot offer anything but as I am lambda light chain and have no paraprotein (currently in remission) and at diagnosis with 1120 lambda I had only a slight/insignificant paraprotein rise – my doc has never said I am non secretary – would you say I am?? I get no bone damage but significant kidney damage on low numbers so will need treatment sooner than others when I relapse. I have been wishfully thinking I may get a trial tho kidney impairment may stop this (gfr 32) – but what is considered too low numbers for a trial please? I think my lucks out with trials but have not really researched it whilst in remission as don’t want bad news but as I have read this would actually like to know the guidelines please.
thanks Rebecca

[christaylorParticipant]

Hi Tom, I know it’s been a number of months since you posted your situation, I haven’t been on the web site for a while so been playing catch up. But if you read this I would be very much interested how you progressed . I also have non secretary MM with no PP indications which meant not getting diagnosed through the normal blood test, until I had so much bone damage I could no longer walk, lytic lesions in all bony structures, fractured ribs, collapsed spine and both femurs at breaking point. Anyway after CDT had my SCT and my light chains went from 1280 to 25 post SCT.       However over the last 15 months the light chains have been rising by a few points each month and each time by an increased factor. They are now at 48 the specialist nurse says it’s nothing to worry about because it’s not a massive spike !, my simple brain says but it’s slowly going up ?.  I was offered radio therapy for pain relief but it never went ahead, so I was really interested in what you have said about radio reducing yours.

I hope your still doing well and keeping it at bay, all the very best.

CT.

[MothasParticipant]

Hi Chris

I’ll talk about the Radiotherapy first. I find it does help in snuffing out discomfort from lesions, my specialist also tells me that the effects aren’t just therapeutic but also help to prevent the spread of the disease. So might be worth talking to your specialist about that.

I have an MRI scan every 6 months to keep track of my disease — or whenever I feel there has been some kind of development. Recently I have started having a PET/CT scan as part of a Daratumumab trial I started around 5 weeks ago. The difference between the two is that an MRI shows historic damage the PET/CT shows active disease in real time.

I completely sympathise about your light chains as your situation sounds very similar to me. I get disease progression at low light chain rises which is unusual compared to many who see them in their thousands. The highest mine have been have been 300 but often in similar ranges to you. I think my advice to you would be to ask to see your specialist to talk through your concerns and you have to remind them that you get disease progression at low light chain rises and you are non-secretory. They often forget your myeloma history or profile.
It is quite possibly just a bit of a minor bump as they can go up and down a bit in a narrow range but I’d definitely be asking for at least an MRI scan or preferably a PET/CT.

hope this helps

tom

[christaylorParticipant]

Hi Tom, firstly thanks for the very quick reply I thought that maybe you were off line at the present so was happily surprised.

Again that’s really interesting about the scans because the only MRI , CT scans I have had was during the 3 weeks I was in hospital getting the MM diagnosed back in 2014 . So I have really no idea the latest situation with the bone damage, but that’s probably because I underwent vertibrea repairs, and then had a steel rod inserted in the right femur ( they want to do the left femur but I am not to keen ) .

I am due to see my Consultant next week after 6 month so I will add the MRI/ CT scans to the list of questions I will ask. The reason I worry about about the rise in light chains and because no specialist have been able to tell me is, at what point in the light chain scale does the Bone damage start, because the amout of bone damage I have I can I’ll afford to have further damage. In short start treatment before reaching that point where ever it may be.

Good luck with trial and all other treatment, again thanks for the prompt reply.

CT.

[MothasParticipant]

Yes definitely remind your specialist that you have bone damage at low progression of light chains. Believe it or not they often forget and you have to go through your entire myeloma medical history to remind them. Especially if like we do, you have an unusual profile of low or non-secretory.

Because you are non-secretory I would push for regular MRI scans as these are a good way of spotting disease progression.

Good luck with it mate.

t/

[peterlParticipant]

Hello Tom, Rebecca, CT:

I’m a little confused regarding the term ‘non-secretory (NS)’.  I have only lambda LC’s, no PP’s and asked my consultant whether this constituted NS-MM?  She replied, ‘No, if you produce excessive LCs – then it’s definitely not NS-MM.’

I obviously need to do more research…!

Peter

[christaylorParticipant]

Hi Peter, yes sorry I cannot help with how they anylis the various types of MM but also would be interested to know. All I know was what was written up on my hospital discharge letter, having spent 3 weeks with so many test every day they would say still looking. I had so so many bloods, Bence jones urine, MRI, CT scans, bone marrow and even bone chips taken from my pelvis which wasn’t very nice. Then finaly told I had MM of NS type and that my serum free light chain was 1280 the PP wasn’t registered but now my PP has been either 1 or 2, and my SFLC is 48. Like you say research into what’s what or anyone who understands these things would help.

all the best, CT.

[peterlParticipant]

Hello again CT,

Many thanks for your post.  And, believe me, I know EXACTLY what you mean.  I’ve also had numerous (too many to count) free LC blood tests.  CT scans, full skeletal Xrays (until I go a glowing green at night!!), and later today I have another spinal MRI.  My lambda LCs are 117 at the moment.  My consultant is pretty definite regarding definitions, and below is an extract from the Myeloma Beacon web page, concerning non-secretory myeloma (NSMM):

“In the past decade, since a blood test called the serum free light chain assay became widely available, it has been noted that about 60 percent of patients who were previously considered to have nonsecretory myeloma produce light chains, which means that they are not truly “nonsecretory”.

So, does it make much difference at all??

I understand the treatments for standard MM and NSMM are pretty much the same?  But I guess it is important to get the terminology correct.  Since when I’m with my overworked consultant or one of her team, there are often medical terms banded about, and sometimes the medical people take it for granted that the patient/their family know what these exactly mean.  Which of course may not be the case.  I was diagnosed about a year ago, but I still consider myself as a new MM patient, and it’s only looking at this brilliant website, and speaking to my GP and hospital staff, that one gets to grips with what it all means.

Very best wishes,

Peter

[peterlParticipant]

Hi again CT and all,

Thought I might lighten the mood.  Because my consultant thinks I have significant lesions in my back due to LC MM – last night (Thursday), I had a full spinal MRI at a local hospital.  I’ve had many MRIs before – in younger days I played a lot of contact sports – and apart from the odd tooth getting knocked out, and head stitches, I’ve had a fair bit of damage to ankles, legs, ribs and back, which as a legacy, required treatments in later life, so I’m pretty used to MRI’s.

Now last night, I didn’t mind my feet being strapped together (to get the correct spine angle), or my torso being clamped to the table, or my head being locked into a cradle, but after about half an hour in the tube, I got an insatiable itch on my right temple!  I have a scar, about 2″ long there (due to a sporting accident), and when my body’s under stress, it invariably itches…  So amid the clattering, banging and whining of the powerful Siemen’s magnets, I had no option but to try and scratch my forehead.

In doing so, I managed to get my right arm caught up in the emergency button cord, which jammed on the roof of the tube.  I’m a fairly big chap, with very little clearance between me and the tube, but after some careful maneuvering, I managed to cure my irritation by getting my left hand under the restraining helmet.  I heard garbled messages from the operator through the earphones, but frankly with 100+ decibels raging in each ear, these messages were completely incoherent, he probably told me to lie still, and probably this was the reason for the scan to take well over an hour, for re-takes.  But I finally got wheeled out, with a thumping headache, but otherwise fine!

It was all over…   Well, not quite.  That was yesterday, and today (Friday), joy of joys, I have yet another MRI at 6:55pm related this time to my prostate.  Yes, the obvious question: couldn’t they have done both at once?  Well no, I’m told by the radiologist, because it’s a totally different protocol, and I would have been under the cosh far too long.

I’m quite getting hooked on the noise and activity of MRI’s, an I’m gonna ask my wife if we can continue with the experience by finding a local disco this weekend — and at least I can have a few beers whilst getting an almighty headache!  But do they still have disco’s these days??

Peter M.R.I. (Hons)

[christaylorParticipant]

Peter, thanks for letting us share your funny situation in the MRI scanner I can imagine the state you must have been in. It would have been an awful type of torture when all you want is to get it all over and done with. It reminded me of a incident of mine in the MRI scanner, I too was waiting to go into the tunnel and the technician asked if I had any metal work on me, so I replied just my wedding ring . He says ok hang on to it but give to me before we start. So you can guess what happened  I am the tunnel the machine starts up & the music playing I have my hands held together when I realise I’ve still got the wedding ring on. In my blind panic I decided to take it off and throw it out !. It just went so when the scan was completed and the technician nurses said are you ok ?, I said I’ve lost my wedding ring. As you know these scanners are in use all the time with patient queuing up for their use, and we have this one being stripped down looking for a ring. Feeling really bad about the time taking I thought I better take the hit and tell the Wife I’ve lost it, but the Technicians said no we must find it, eventually they did find it under the tray that you lay on. I can only imagine these Scan operators must see all sorts of peculiar incidents in these scanners. Many thanks for the story it is very much up lifting.

CT.

[peterlParticipant]

Hello again Chris,

Well, I have to say that your experience beats mine by a country mile – and I’m glad you came out of it in one piece — literally!  They say MM sometimes affects partners as badly, if not worse than the actual patient — but I cannot imagine the disaster and consequences of losing a wedding ring in such circumstances;  and thanks so much for sharing that with us.  And a message, that every man who reads this will take on board when it’s time for their MRI.

But as an aside, you raise an extremely interesting question.  I have a degree in physics, so take some interest in the MRI technicalities.  I hope too goodness I don’t bore you…?  But during the very intense magnetic field that gets the sub-atomic bits in your tissue to ‘flip-up’ and the varying field that gets them ‘excited’ in order that they can ‘flip-back’ and give out the signal that the Siemen’s sensitive detectors pick up, so constructing the ‘sliced picture’ of your tissue, and any metal that can be magnetised (say a fragment in the eye), similarly gets on the move – and hence the obvious danger.  However, noble metals (from my uni’ days) like pure gold and pure silver aren’t magnetic, so won’t flip, and should be okay??

However, having said that, it’s best not to take ANY chances and remove all metal, which I’ve now done — wedding ring safely put away for my prostate MRI in a couple of hours — and many thanks again for reminding us all.

As with modern technology — it’s all a bit of a flipping mystery!

Peter

 

[christaylorParticipant]

Hi Peter, sorry for not replying to you for the message you have written before now, but I have been in hospital with a severe upper respiratory infection. I felt so ill and I suppose I was lucky in that I had an appointment with my Consultant and my wife and I only sat down, and when I said I felt so unwell they examined me and said I was going to be admitted straight away. So I spent a few days having intravenous antibiotics and fluids before being discharged with oral antibiotics. At present although feeling better than I was I am still not right and extremely worried that the antibiotics don’t knock it back completely due to my immunities being low.  If you feel up to it please let us know how you got on,  I hope all is well and take care. Many Thanks CT.

[peterlParticipant]

Hello again Chris,

i hope this post works. I’m on an iPad, and the first submit failed. If you get two posts, blame Apple. I’m sorry to hear about your unscheduled hospital session, but timing is everything, and yours, with your consultant, is excellent!  I sometimes think the mental effects of such a surprise hospital stay can be worse than the physical problems. Last year I had 11 nights unscheduled stay in hospital,and frankly not nice, but we are where we are, and I guess it all has to be expected. The alternatives are not pleasant!

Sorry for being a bit thick, but I don’t quite understand what you meant related to the use of antibiotics? Again, I doubt if there’s any alternative, and they’re probably a very necessary evil.

I had my consultants mtg this morning. Unfortunately, the LCs are still on the climb (from 117), so it’s further tests I’m afraid. As my wife said, “it’s a bit of a life changer – even managing the tests, the calendar…” And with the side effects, I’m a bit of a walking pharmacy!

my prostate MRI didn’t quite go according to plan, because they couldn’t inject the contrast dye, because they were worried about further renal impairment. So it had to be done dry, and I await the results. Yep, I’m combatting difficulties now on three fronts: the MM, the residual side effects of the chemo, and possible prostate difficulties. However, all that pain, worry and fatigue is gonna have to end tomorrow because the wife and I are taking our grandsons to Dorset for a week ( I should have more sense!). On a good day they’re great, on a bad day, I have to get between them to stop the haymakers flying and the loss of teeth!

Anyway, I’ll still be on the iPad, so please don’t hesitate to post a message, and say how you’re getting on. Very best wishes,

Peter

[blossomParticipant]

Hello

I am new to this, so please bear with me. I was diagnosed in August 2014, started chemo (CTD) in November 2014 and finished in August 2015. My paraproteins are now less than 1 (from 30) and my light chain ratio is good.

Am I right in thinking that part of the treatment should be regular scanning of bones, CT, MRI or x-ray to determine the progression of the disease? I have read your comments below and I too, only had x-rays before my chemo. How does one know how much our bones have been affected…I have asked my oncologist if I could have an x-ray to see what’s going on and his answer was ‘it won’t show up on an x-ray’….so why on earth did I have a full skeletal in Aug 2014 as part of the diagnosis?? I think this may be cost-cutting…..

Also, do I need Zoledronic infusions every 4 weeks as I do at present.

I am 65 and fit, and very well apart from having been diagnosed with this wretched disease!

I look forward to any responses and best wishes to you all…..Cheryl

 

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