[wendyduffieldParticipant]

I rang my haematology support nurse today to find out the result of my last light chain test on July 7th and to my surprise (as I had allowed myself to get complacent) they had risen to 22 from 10 (3 to 19 is normal), an increase of 100% in two weeks since the previous test. I expressed concern and asked if I would have another test soon but she said as I was well, I would have to wait until my next clinic appointment in two months time as they wouldnt treat it as a relapse at this stage and it may just be a fluctation. And that tests were expensive and cant be too frequent when not on treatment.

Now I am going to worry for the next two months that I am relapsing and wondered if anyone with light chain myeloma had any similar experiences to share?

[HelenParticipant]

Hi Wendy
I can't help here other than to say that they look for an upward trend over a period of time and that some fluctuation is not uncommon, however if I was you I'd be wondering if I should be an ostrich and carry on, or should I plead with my consultant for earlier testing, even if the tests are expensive, what price is knowing where you stand. It's a very tricky decision, I'll keep my fingers crossed that it's all ok
Love Helen

[tomParticipant]

Hi Wendy

Well your Nurse is correct, I am told that the tests over a period of time go up/down (no wonder am confused) but your Nurse is wrong in saying "tests were expensive and cant be too frequent when not on treatment." well am sure if it needs treatment the sooner the better.
I would get in touch with the Top Man and ask if you can have a test sooner or a chat one to one.

Love and Hugs

Tom "Onwards and Upwards" xx

[DaiCroParticipant]

Hi Wendy,

I am currently on Rev & Dex and my readings since starting treatment have read:

300-225-125-212-175-128-200… i was slightly concerned with the last reading but my consultant's response was 'not to panic' as the yo-yoing might well see a reduction on the next test.;-)

I appreciate yours is a different kettle of fish but at my last relapse started in November and was confirmed in January. I went from 0 to 64 – 64 – to approx: 140 – 140ish to 190 before relapse was confirmed. I had a break as I tried and just failed to get on a Carfilzomib trial and started my Rev & Dex treatment in March at the above 300 mark.:-|

So while 10 to 22 is a definite upward movement (more because it has crept out of the 'normal' range) it is still only a shift of 12 light chains… which might be worrying if we were talking about PP's… but we both know that light chains can be talked in cricket scores and still show no effect on the patient.:-)

I hope your mind is settled for the better sooner rather than later.8-)

Dai.

[EvaParticipant]

Dear Wendy,
I'm in London – saw my onc today in hospital and am staying at someone's house, so it's difficult to write.
I just wanted to say that my light chains moved around furiously for about seven or eight months while I was on treatment for my relapse. The treatment was working, but the light chains were going up and down.
Having a reading just a bit over normal often doesn't mean much. Light chains can be absolutely massive for some people. Mine were considered fairly low( at several hundred). Once I seemed to have a superb response to treatment, they finally came down to 29 for IgG Kappa. The IgG Lambda were also in the high twenties so the ratio was ok.

It must be frustrating wondering. Two months is a long time to hold out. Maybe you can get a doctor to do a complete blood count ( CBC) test. This won't be as costly to the NHS. It's not definitive by any means. If your hemoglobin is good and not dropping fast and many of the results are within range, then it's less likely you're relapsing. Of course, a relapse has to be well entrenched before your bloods start heading south. I don't know if you're on meds at the moment; some meds can make your platelets and/or your neutrophils drop. Ideally, you would stop worrying because an IgG Kappa light chain reading of 22 is really well withing the range of 'normal' fluctuations. As Helen says, it's a longer term trend that matters. If you find the wait unbearable, you could find out what a freelite test would cost if you pay for it yourself. But even then, it would be best to wait a bit before having another one. When I had my relapse, the hospital where I went to, sent my freelites off to Birmingham about once a month.
Wendy, I also want to congratulate you on your wonderful(and fast)run to raise money for MUK. Now that I am off the dex, I'm more mobile( terrible withdrawal symptoms each cycle), and I'm trying to shuffle for a mile a day or even two.
Best,
Eva

[eveParticipant]

Hi Wendy
Bit of a Bummer after such a nice holiday and to come home and have your kappa light chains going up.

As to having to wait a couple of months to find out what is going on,to me is all wrong,but saying that Slim is in the same boat,for a long time now the bloods and kappa light chain test have yielded results that have nothing to do with the condition of Slims Myeloma.So we are now use to the fact that the only way to tell his condition is BMB.:-( saying that we feel more confident in BMB results and they do not mind doing it because they get BMB for trials,so poor Slim has had about 5 and goes for his 6th one middle of this month:'-(

So when Slim started remission then have SCT and wait 3 months for BMB its 7 months of worry,and making a judgement purely on bloods which have always showed good responce,kappa light chains that will be tested in August and last BMB,and the powers that be wonder why you worry.:-P

I would like to see PET scans done as that would show any,cancer out side the bones,they seem to use Pet scans for Lung Cancer,but not Myeloma,
I could say try not to worry but you will Wendy,I will say why not push them ,they can only refuse you a test,what have you got to loose.Eve

[wendyduffieldParticipant]

thanks for all your replies, Eva, I have asked for a full blood count when I have Zometa on Monday, I think that is a good idea. Dai, I feel like a novice to this game when you mention your light chains. In the scheme of things I am going to try not to fret, it is only slightly outside normal range and it could be because I had an infection when they were last taken.

I could demand another light chain test but if they were further up then it wouldnt necessarily mean I would start treatment and would just cause me more anxiety. So Helen I think I will take the Ostrich approach unless my full blood count shows up some abnormalities.

Right now Eva running the 10k seems like a distant reality as beset by further viral infections since then but at least I was able to do it at the time.

Wendy

[HelenParticipant]

Ok then, how did you get on?
Love Helen

[wendyduffieldParticipant]

Hi Helen, pleased to say my kidney function and blood count were all absolutely normal however I couldnt cope with the ostrich approach any longer and today asked my haematology support nurse how much a light chain test would cost as I was planning a trip to Asia in November but did not want to go or book anything if it looked as if I was relapsing and that I needed to start booking flights before my next clinic appointment at the beginning of October. In that case she said she would speak to my doctor about having an earlier test and that it wasnt a matter of me paying for it so I will find out later this week what the doctor says. Will keep you posted.

Wendy X

[eveParticipant]

Hi Wendy

Good for you that's the way to go;-) Eve

[VickiParticipant]

Hi Wendy,

Keep those light chains down, you were an inspiration running that 10k, and your holiday to Asia to look forward to!. Just because the light chain tests costs a lot should have no bearing on if you need it…..you should have it.

Best of luck

Vicki x

[HelenParticipant]

Hi Wendy
Ostrich behaviour is a good holding strategy until you make your mind up about things I find! I'm going to use it when I need to! I'll keep my fingers crossed that it's just a blip in the sflc's, and everything settles down.
Your holiday in Asia sounds exciting, where abouts are you going? I've just booked to go to Venice in September.
Love Helen

[wendyduffieldParticipant]

Hi Helen

I am thinking Burma or Cambodia but am slightly cautious because of high number of diseases that are out there to catch so may end up being latin america instead. The doc said I could have a light chain test now I had it on Thursday, should find out the result next Thursday so fingers crossed.

Venice sounds nice, take plenty of euros!

Wendy x

[VickiParticipant]

Good luck Wendy

Hope all goes well so that you can progress with your holiday plans….

Vicki

[jmsmythParticipant]

Everything crossed Wendy for Thursday. You are one Gutsy lady. Whatever you decide – enjoy.
Helen I have been to Venice twice I just love it – a beautiful place and would love to go back – enjoy

Love Jean x

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