This topic contains 15 replies, has 10 voices, and was last updated by 
Helen 11 years, 5 months ago.
Hi all
I've really been on a roller coaster recently with regard to my impending relapse. My kappa light chains rose out of normal range in December/January, but slowly so I didn't need treatment then last month showed a massive rise to 617mg/litre from 77mg/litre but on retest a massive fall to 117 mg/litre. Conclusion by my consultant was that initial test was wrong. Phew relief! Then at my appointment on Friday he told me that on flagging it up with the lab, it turned out that the retest result was wrong. 🙁 🙁
Cant quite take it in. Has anyone else experienced such errors with their test results? It seems bizarre. Anyway I'll be starting treatment soon, just waiting for the result of the test I had on Friday first if you can rely on it.
I've just written a post on my blog about how I feel, the link below should take you to it.
http://wendyduffield.wordpress.com/2013/05/27/the-test-that-was-right-that-was-wrong-that-was-right/
Hi Wendy
I read your blogg and you have had a terrible experience. I remember feeling elated when I read that a mistake had been made in your test and cannot believe that such a terrible mistake could be bade. I hope that that your next appointment brings better positive news.
Hope your mums wrist is ok
Best wishes Jean
Gosh what a shocker Wendy, doesn't bear thinking about too much, lets hope there's some stability and right results soon xx
Vicki and Colin x
Dear Wendy
What a blow, are you having BMB as well soon? I'm hoping there is still fluctuation room in all of this upping and downing.
I am glad you enjoyed Paris without this knowledge though, the little holidays are islands of normality. Fingers crossed for you.
Love Helen
Hi Wendy, I wonder which hospital you attend or which lab does your tests. I had some samples tested before Xmas and the results showed a high light chain result 600+ they were concerned and I had another test 8weeks later and the result was 200+. This seemed a lot better but the Doc said they were using a different scale at the lab and the results were not comparable. I am now going back every 8 weeks for tests, seems a bit like your results, I go to Leeds St.James hospital. Ted
Hi Wendy
Your emotions must be all over the place at the moment which is totally understandable. I wonder whether you have had a cold or virus recently which could have explained the increase in your light chain levels?
My light chains jumped from 600 to 800 just after Christmas and I was given similar advice that if they reached 1000 then further treatment would be needed asap. However, the increase was due to me suffering from a cold virus over Christmas. Apparently we all produces more light chains when fighting off infections/bacteria. Usually after the body recovers from the virus, the light chains revert to their "usual" levels. In my case, they fell back to 600 which is around the level they have remained for the last year and at least this has given me a bit more time before further treatment.
The only other time my light chains jumped significantly was after shingles in 2011, but unfortunately on this occasion they did not revert to their previous level after I recovered from the virus. Recently, I asked my consultant why didn't the light chains resume to their usual level after shingles, but reduced after the cold virus. He didn't have an answer to this question!
Fingers crossed for your next set of results.
Jan x
Hi all
Unfortunately my last test results from 24 May showed a rise from 687 to 1032 mg/litre so relapse has definitely been confirmed and I will be starting treatment shortly. Although I'll have another test next week I really don't think there is any room for doubt although you never know! (Ted, I am tested at the Manchester Royal Infirmary). They don't feel the need to do a BMB yet as if I start a trial I may need one for that and I don't want to have two!!
And Jan, no I haven't had any colds or infections recently (that I am aware of it) which could explain recent rises. I'm glad yours returned to around 600 and appear to be fairly stable at that level and hope that you don't have to start treatment for a while yet.
I suppose there only good thing about this is that it brings some certainty to my situation although I still don't know what treatment I will have and when I will start! My consultant seems to be saying lets wait and see but my view is wait for wait exactly? Kidney failure! Anyway back in next Wednesday so intend to make the most of the next couple of weeks before treatment starts and whilst feeling well. Lots of tennis to be played, dancing to be done and of course eating and drinking plus will continue to train for the triathlon I was planning on doing in August until such time that I cant physically do it!
Wendy xx
Hi Wendy
what a sickening result I have often queried ny test results at my local hospital and yes a few have been wrong they got me at 0 paras on one test just after i had been to UCH which was a completly different reading showing i needed to start treatment so another test also my local hosp will not do a light chains test which is the best way to measure my MM makes you worry hope everything gets sorted
Love Jo
Hi Wendy,
I am sorry your Light Chains are up to a level that says 'Relapse'. Still, I hope you manage to eat, drink, dance and play tennis without interruption from your MM. I am astounded that your recreation includes a training regime that will allow you to compete in a triathlon. :-0 :-0 😀 8-).
My Light Chains are in the same range as yours but I get completely knackered if I walk from my bedroom to the kitchen and back… (3 am raid on the kitchen for Horlicks and chocolate biscuits). I am hoping that my consultant reduces my Velcade from twice weekly to once a week if the results show that the Velcade is holding the Light Chains 'in the range'. That's our plan… and then, hopefully, I will get a little fitter… nothing spectacular, just enough to walk a 100 yards – rest – and then back… that for me will be my 'triathlon.8-)
Treat your MM with disdain for as long as you can… and then start fooling it to get whatever you need.:-)
Dai.
Hi Dai
Firstly you need to bear in mind that I have not had any treatment since my stem cell transplant over 18 months ago and have never had any bone issues fortunately whereas you have been on heavy duty treatment for a long time and it is probably that rather than the level of your light chains which has sapped your energy levels!
Secondly I have to fess up as they say, I am not doing the full distance Olympic triathlon but the sprint one which is less onerous but demanding enough for a first timer with myeloma! I was rather hoping that my light chain levels would stay below 1000 for another couple of months so I could do it before needing to start treatment. Given how well I still feel I am tempted to hold off starting treatment for a little longer but not sure how far I could safely go without risk of organ or bone damage?
When I do start I may be doing the MUK5 trial, fingers crossed I get randomised to carfilzomib!
I hope you get to do your 100 yards very soon 😛
Wendy
Hi Wendy
Well I am drug free and I raise my cap to you and all that "Just" the sprint thing as I get a sweat on just watching Darts on Telly Lol.
Sorry its back but am sure a young Lady like your good self will soon have it thrashed .
Love tom Onwards and Upwards xx
Hi Wendy
I am really impressed with your high level of activity which you have retained since your myeloma treatment. Unfortunately, I never recovered my energy levels and I easily become tired which is so frustrating especially as I was very active prior to myeloma.
When your consultant is suggesting waiting, I presume he/she wants to see whether a pattern is emerging about just how rapidly your light chains are increasing. You never know, they might not increase so much after the next test. However with your current light chain levels, I would suggest you ask your consultant for some advice about undertaking your planned sporting activities in order to avoid any possible bone damage. damage.
When I was diagnosed with myeloma my light chains were 2,100. However six weeks prior to the diagnosis three vertebrae collapsed in my back. Up until the bone damage, I had experienced a few acute pains, but generally felt OK with no prior back pain. You just need to be careful now that you are possibly heading for a relapse.
Jan x
Hi Wendy
Well this RollerCoaster does deliver the peaks and troughs for us doesn't it. I'm giving you the front seat now while we see what happens to you next. I'm not eligible for muk5 as haven't had velcade, oh hang on …. I have had Velcade now… watch this space!
Hope you manage to pack as much in over the next few weeks/ months/? Before treatment hits in again, I'm ok but tired on it. I don't feel much worse than I was on the Revlimid though so still working for the moment.
Love Helen
Hi Helen
I think it will be weeks rather than months before I start treatment. My consultant doesn't think I'll get to the date of my triathlon (August 18th) without needing treatment 🙁 🙁 . Whether I can do it whilst on treatment I don't know, I'm impressed by you being able to carry on with work whilst on velcade though.
Love Wendy x
Hi Wendy
I'm not doing much at work! My group are all very good and we have a big study coming to a close after 3 years, I am the gaffer and have trained them sooooooooo well. I'm delegating like mad . Doing training bookings and all the funny jobs no one else wants to do. Like cleaning the fridge and posting those notice which say 'if it looks like a hazard to my health they will find it filed in the bin' I'm particularly whirlwindy on a dex day too. So there is no quarter.
I am being sensible I plan to be taking 2 days holiday a week from now and have treatment after work on Tuesday and Friday morning. The boss says just do what I can, it's beginning to bite some days now, so I'm suspecting I can't keep it up. Yesterday was bad but I'm ok today, even did a couple of hours gardening after going out for lunch.
Hope you get to your triathlon, keeps you focused.
Love Helen
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