This topic contains 18 replies, has 10 voices, and was last updated by 
HelenR 10 years, 10 months ago.
Hi all,
I have just spent an unexpected awful 2 days in hospital, having been admitted with a high temperature and fever. The cause of the infection is not yet known and may never be known but with relapsing myeloma I didn't think I should take any chances. The good news is that I am fine and my temperature is stable, the bad news is that treatment will be delayed by a couple of weeks till I am fully recovered so I am of course worried about my myeloma spiralling out of control and doing me some bone or kidney damage but I have been told by my consultant that it will be ok to delay for another two to three weeks or more as my kidney function and blood counts are good so far, even though my kappa light chains are now at 1135mg/litre. Did anyone else get to that level before starting treatment?
I have written about the experience in more detail in my blog, welcome to read
http://wendyduffield.wordpress.com/2013/06/09/a-room-with-a-view/
Take care all
Wendy
Oh b******h*** Wendy you don't believe in doing things by halves do you? As you know I'm one of they oligo secretory types so my numbers are always low and I'm being treated on the basis of bone marrow percentage. But I believe sflc numbers can go up to many many thousand. I'm not sure but if you have your initial diagnosis numbers and bm percentage there is an idea of correlation unless you have become nonsecretory. So if at diagnosis you were 4000 sflc and 50% bone marrow infiltrate, they might expect something similar, but this is not an exact science as you know and you haven't had a biopsy yet. Your numbers will have gone up a bit while you were recently ill. Will your planned mini allo be an unrelated one or do you have the family lined up to share the experience?
Take care
Love Helen
Ps I too have done much much crying and described a similar trajectory for myself, hence the current day unit crusade,but hang on in there lovely lady, be kind to yourself, we head for a trough again.
H
Aww Wendy sorry you aint been too well 🙁
You do right getting Anti B in you as soon as poss, stick with it girl as you say they might not find out what caused it but as long as its all gone I am happy for you.
Love and Big Hugs
Tom Onwards and Upwards xxx
Hi Wendy,
I am not sure I completely understand the different types but my Mum's light chains were 10,000 when first diagnosed, they have gone up and down with the lowest being about 1,000, she is current on her fourth cycle of Revlimid and they are at 7,000. She has no kidney damage at the moment. So it seems they can go up to quite a high number as Helen has said.
All the best,
Jill
Thanks for that information about your Mum's light chains Jill, they think mine were over 10,000 on diagnosis when I had acute kidney failure though they were never properly measured and I had 80% myeloma cells in my bone marrow so I suppose I've got a bit of a way to go yet but it is a fine balancing act between not letting the myeloma cause any damage and delaying treatment because that is going to make you ill and/or in my case because of infection.
I mean you don't run a car at 5000 revs per minute round town all day every day do you!
Helen I don't have a sibling match unfortunately but apparently there is a 9/10 match this time (last time it was discussed after my auto there was only a 7/10 match so I suppose that is an improvement). Just wondered why they are not recommending another auto sct for you?
Wendy
Hi Wendy,
I am so very sorry to hear of such poor readings from one of our olympian class athletes… people like you and Tom and Tom2 are supposed to cheer us up with your super blood results and athletic achievements. 😎
Joking aside it shows how vulnerable any of us can be to this bloody disease. I have had several stays up on the ward, usually… no, always by dint of infectious invasions and while they have always found a cure by throwing the right A/B bomb they have never found the cause… regardless of myriad swabs and cultures tested along the way. I feel a tad embarrassed by my ignorance of the differentials between kappa light chains measurements: i.e. per litre – per litre/mg – per mg and what they signify in relation to the individual and the disease in general. In that case I tend to side with Tom… by letting the medics throw the bombs, watching the numbers decline and moving back onto treatment. I tend to study the big picture and leave the devil to calculate the fine detail. 😀
I really hope you feel the benefit of the A/B's as soon, as soon can be Wendy and that you find yourself out of the harsh reality of a hospital ward and into a virtual chatroom… ready to tell us of your next venture(s). 😎
Much love and regards 🙂
Dai.
Hi Wendy
9/10 match is good.
I have lots of sisters but was over 55 when diagnosed so the allo course wasn't an option. I'm not heading for SCT as the bmb shows a mixed cell line.. Mostly myeloma but some waldenstrom macroglobulinaemia features and other cell changes. I was very very ill with the colitis after the last SCT so my remission was quite poor quality overall, I think he's hoping that velcade will smack it on the head quite sharply if I can tolerate it. Then the plan is to see if I get more of a better quality remission for a while, then who knows, I will keep you informed.
Love Helen
Hi Dai
I was actually feeling much better before I got the intravenous antibiotics but I got them anyway plus a course of horse tablets for a week! Now I think you are being modest about your knowledge of light chains and your disease because you once very helpfully replied to a post of mine about the fluctuation in your light chains, it doesn't really matter about mgs and litres, lets just say mine are 1135 and I seem to recall yours were at the 500 mark when you started treatment on relapse. In the end whether one knows the ins and outs and ups and downs or not we have to hope that our healthcare professionals know what they are doing!
Regards
Wendy 😀
Hi Helen
Oh you sound complicated or at least your bone marrow does! Was this recent BMB the first to confirm the mixed cell line? If that is the case then then either it wasn't picked up before or these are recent cell changes. I hope the velcade works for you and you continue to tolerate it.
Wendy x
hi Wendy
sorry you had to go to hodpital comes as a bit of a shock especially as you have been well all this time hope this is just a glich and you will be back on track soon
Kind Regards Jo
Hi Wendy hope your nearly at the end of your horse tablets and feeling a lot better.
I liked your last blog so much feeling in it you and Jet have the knack of putting into words how I'm feeling xxx Sandra xxx
Hi Wendy
My initial diagnosis was 'it is very serious and I fear we have to call it an Atypical myeloma' it has always been mixed and first thoughts were lymphoma then Waldenstroms BMB seemed to show over 50% standard mm as well, they are all treated roughly the same so we have gone with the larger infiltration.I did have a second opinion, and a third, and they keep checking for amyloid too as I have the dark circles and little lumps round my eyelids that sometimes goes with that.
All very complicated, I'm tolerating the Velcade ok I think, 5 th dose yesterday and another 2 hour wait in CDU, no comfy chairs or quiet rooms here, it is vile, I'm working on my thesis of ' constructive criticism' of it!
Are you feeling better in yourself now? Or are you still reeling from the situation. I'm very grumpy and bad tempered about it, no patience with anyone! Bored with not feeling well I suppose.
Love Helen
Hi Helen and Wendy
You two are going through it aren't you! Wendy FYI Colin's light chains at diagnosis Was 35,000 and his bone marrow had 92% so it was well up there at the beginning! Remarkably he had no obvious kidney damage which they were gobsmacked at….
Helen, sorry to hear you are complicated 🙂 I didnt realise that the bone marrow was a mix and match type thing! This mm is a b isn't it. I so feel for you all, not meaning to sound patronising, and I feel sorry for myself as I can't wave a magic wand to make sure Colin is totally well! I
Hope you both start to get dividends from your treatments soon
Vicki and Colin x
Hi Wendy – and Helen and others,
I mainly just wanted to say that I'm rooting for you from the sidelines, and hope the next line of treatment whacks those levels right back down in double quick time.
Wendy, can they do a skeletal survey for you while you're waiting to start? Would help at least to check that there are no new lesions etc.
I looked back at my notes to see what my light levels were, although that was first time not relapse. I had quite a lot of bone damage, hypercalcaemia and some kidney problems, but the earliest record I have of my light chains is only 1270. However, that was a week after I was admitted so may have already come down quite a bit as they'd put me on a lot of steroids and pamidronate for they high calcium. The kidney and calcium stuff seemed to resolve fairly quickly, but obviously the bone lesions are more permanent. Clearly everyone is different, but definitely don't feel bad asking for what you need. I can see how it'd be horrible waiting and worrying about what's going on. And you want to keep your bones in tip top condition ready for your next triathlon/holiday.
Helen
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