[brochoParticipant]

Hi Eve I may be able to answer part of your query Blood tests give overall readings but bone marrow can form little pockets or cumps of myeloma. If the sample is taken slightly to the left or right for instance the result could be much lower In the beginning my paraprotein readings seemed to accurately reflect what was going on butafter a short while they used the serum fee light chain test About 18 months ago on my second relapse , and a new tumour , they realised the pp readings were useless in my case Recently following an abnormal serum free result made them realise that mri was the only way to work out what was going on My consultants have always looked at the whole picture , starting with how I am feeling and any new and persistent painso the delays havent been too long I believe this holistic approach is much better than getting hung up on blood test numbers and for a long while I havent bothered worrying about differences in test results It will be interesting to hear what Slims doctors say when you ask them love Bridget x

[eveParticipant]

Hi Bridget and Min
Just what i need,informed fact with a bit of humour,thought i might be upsetting Dai before his holiday and i would hate to do that,have been sitting thinking consultants just do not have the time to explain,we should all get these results without having to ask for them,and as you say Min an idiots guide to help us.
I do get a lot of results on demand,but get told sometimes next time you come in!!!
You are right Min that is the Ratio figure,the full line reads
kappa 163.45——lambda 11.14——-k/l 14.672 have been told it is the last one that counts.
So remission,but his marrow says it has increased.!!!!

I do realise a lot of people do not want to know and just go along with things,sorry this is not me,I accept nothing on face value and when its someone you love,then you need to know everything.

Bridget I asked about MRI scan instead of marrow biopsy and was told it will not show what is going on with bone marrow!!!He is having another MRI because he is never out of pain,and in one place it has been there from the start,so having another look to see if there is more damage because of results,He is not very good to admitting to pain but the fact that he takes tablets,init,s self is enough for me to know how bad he must be.

Thanks for all your info I do feel a little bit more informed but i would like to hear if anybody has had the same results with the bone marrow!!!

Love Eve

[DaiCroParticipant]

Rant, chat, gossip and surmise away… you are not going to upset me with either conjecture or facts… not this side of my holiday you wont. 😎 😀 🙂

To tell you the truth Eve, my primary involvement in this whole kappa/lambda/ratio mystery is one of fascination. I'd like to get to the bottom of it as much as anyone… and anyway, I woke up this morning on the turn…. like milk… only the good way.

My taste buds are starting to recover and I feel a general lift in my energy levels etc… nothing big but typical of the latter stages of cycle recovery… about 3/4 days early… it must be the holiday spirit pushing forward.8-) Oh, and I am amazed but my left leg looks almost normal – about 10/15% bigger than my right (2 weeks ago it was elaphantine:-P ). I am not getting too excited… but I am cautiously optimistic of being reasonably well for the actual holiday away.

Silly really, I am only going home for 8 days and yet it feels like a world cruise… and I wouldn't swap one for the other at this time – no way.:-)

Dai.

[eveParticipant]

Hi Dai
Thought i would let you know Dai Slim did not have Picc line,but solved his problem after last week looking like a pin cushion,bought a cheap hot water bottle fill it and wrapped it up in pillow case,applied to arm while waiting to be called in,works a treat,and no time wasting looking for veins:-)been to hospital this morning,have to go back for 1 oclock,but Velcade shelf life is three hours,so going in for 2ish.

No side effects except feels,he is sitting with the back of his neck to a fire,but it does not feel hot to touch!!!,having a few problems sleeping,said it feels like his body is in 3 parts and does not fit together.

Regard Eve

[DaiCroParticipant]

Hi Eve,

I have a personal hand warming pillow on my wish list… and I must admit that it most definitely helps. 🙂 Re: the burning neck, Slim's not using the hot water bottle as a pillow by any chance? 😀

Sleep, or lack of it is the bane of my life… always has been but now, when I really need it, it continues to evade/avoid me. I grab an hour here and there but I go to the toilet several times a night and have fallen asleep reading on the throne on many occasions. I have also had to call for Janet after sitting for so long that my legs have gone to sleep… When PN meets P&N its no joke… well I suppose it is really but tying to drag my jellied legs out of the tight confines of our en-suite and onto the bed can be the sort of 'fun' that Janet could do without at times various – usually between 1:am and 6:am. Too much information?:-D

I'll see Slim's 3 parts and raise him to a jigsaw – one of those John Constable jobbies… but I know exactly what he means.

BTW… after establishing that you are a scouser I automatically assumed that you both hailed from and resided in, Liverpool. The other day you mentioned Deal, in Kent… my son is on the Isle Of Sheppey.

Dai.

[eveParticipant]

Hi Dai

Left Liverpool 40 years ago,no regrets,when I first came down here,everyone thought I was Irish LOL now I have a plum in my mouth they think I am Welsh.
I know the Isle of Sheppey,few years since I have been there,Deal name fame is they lost 11 bands men to IRA bomb,they were all musicians no threat to anyone,most 18–21 years old.
I do love Kent,most days you can see France I just wish I could import the northern sense of humour I need it after today:-P

I have worked it out why they give you a week off starting on Monday 5 August we have hospital,Monday,Tuesday,Wednesday and Thursday,not a happy bunny:-(

Still trying to work out why?you must have heard the saying(cannot arrange a p—–in a brewery) thats what it feels like but nothing to do with nurses who do the chemo,

Enjoy your holiday it will do you both the world of good,I have lots of lovely memories of Wales.Eve

[DaiCroParticipant]

Regarding the holiday… although it is only 8 days back home in Wales with family it is quickly taking on a significance beyond its stature… with 2 brothers and 2 sisters and their spouses deciding to make it a really chilled out get together. Janet and I are really looking forward to the break and now that my leg is decreasing I am driving again… so we just need to avoid any mishaps or MM booby-traps.;-)

Oh yes… speaking of which… I have felt rough all day since returning from the car's MoT and I thought 'Please …no!' Insertion… deletion… temperature up to 37.9 or thereabouts all evening up until midnight and then down to 37.0 by 2am. Janet mightily relieved.8-) 🙂

Roll on next Friday… I'll be a nervous wreck by then.:-)

Dai.

[tomParticipant]

Gosh This Velcade is a tough love 🙂
Hope all goes well next Friday 😎

Tom "Onwards and Upwards"

[Author]

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