[teds31Participant]

Hi, just been for my 3 month visit to clinic, I have been Smouldering MM for about 6 years,the doc said my PP was fine at 14, it has been between 11 and 14 most of the time ,but she said my light chains were 900, they have been up and down over the years and she said this was usual but they have never been 900 and she said the trend was upward this was ofcourse Augusts results as it takes 2 weeks to get the blood results. When I asked if I would get my usual 3 month appointment she said she would like to see me in 8 weeks After Christmas, I haven't much experiance of light chains can anyone say if they are significant or as important as PP results. Ted.

[BADGERParticipant]

Hi Teds

I make heavy light chains which is an indicater of MM being on the move I have started velcade as my light chains had shot up it was the light chains that helped damage my kidney so its omportant they keep a good eye on it you may be ok but it might be a good thing the doctor wants to see you early
Keep well
Love Jo x

[VickiParticipant]

Hi ted,

Colin was told his pps were17 at the start of his diagnosis, but his light chains were 31000. (yes that's 31 thousand!). The consultants never really explained the difference or significance of each, but I think the light chains are significant due to floating about and affecting the kidneys……I could be wrong and not medical.

Which ever way it goes ted they got colins light chains down to 700 before his SCT and his pps down to zero, so if you do end up with treatment, got every confidence for you 🙂

Vicki and Colin x

[tomParticipant]

Hi Ted

Well I just nipped in to say Hi (Hi) as I aint a clue about PP cc or any other things techie ? so good luck I hope you dont need treatment for many a year to come 🙂

Tom "Onwards and Upwards"

[teds31Participant]

Thanks all ,always get a good responce on here, it seems from Jo,Vicki and Colin that it has to do with kidneys,I will ask when I go back, I'm certainly a long way from 31,000 and hope it keeps that way. Thanks for the support Tom always wwelcome. Ted.
Will let you all know how it goes (for the record 🙂 )

[HelenParticipant]

Hi Ted
The abnormal paraprotein in myeloma is usually found as a whole molecule – like a Y shape, for example igA igG igM. But some people only have small whole pp levels but produce large numbers of small sections of the pp, these are called light chains or Bence Jones proteins and are usually found in the urine. With the new free lite tests you can pick up light chain numbers in blood now. Light chains have a nasty habit of being small enough to collect in and cause dammage to the kidneys, so a close eye is kept on the levels.
Hope yours don't go any higher. Love Helen

[teds31Participant]

Thanks Helen that explains it very well,I did mention in August that I hadn't had a urine test for a long time and he said they could get just as good a result from blood samples. Better pay more attension to my kidneys as I am already having bowel problems, too close for comfort. Ted

[HelenParticipant]

Hi Ted, happy to help, better get to grips with your high fluid intake now, I'm still finding it a bit tedious to drink as much as they advise.
Love Helen

[teds31Participant]

Dont really know about that ,seen it discussed on here before ,I think they said about 3ltrs a day which seems an awful lot if that means water, will that include tea etc. If it meant beer I would give it a good try.:-D
I can understand that drinking plenty must be good for the kidneys ,though the clinic never mentioned it. Ted

[PerkymiteParticipant]

There has been much discussion whether it (6 pints of water) includes tea and coffee etc… Some say it does others it does not.

When I was diagnosed in July 2009 I was told in no uncertain terms that it is 6 pints of water a day and that means water and that was by the Consultant! Being an ex military man(and well trained by the wife) I am good at doing as I am told, I have ever since then drunk 6 pints of water a day (273 gallons a year- no wonder there was a water shortage LOL). Look at it this way it cannot do you any harm but it might do a lot of good.

I think it was Tom who gave me a good tip and that was to line up 6 x 500mil bottles on the side in the kitchen first thing in the morning. This way you know how much you have drunk, and, can pace them throughout the day. At the moment I am sitting at my computer with my pint glass of water which is my second of the day, my last pint would be about 9:30/10:00 p.m. When I travel, which has been frequently this year, I take my bottles with me,

As you can imagine with advanced prostate cancer as well I am just about peeing for England!

Kindest regards ? vasbyte and drink the water 😛

David

[tomParticipant]

Yes you all drink drink and drink some more. I know its a challenge to do but its well worth it yep I do the wee botttles so I know am on the mark but it dunt stop me drinking more 😀 (and not just the beer and Vodka lol)

Not yet watered up but on my way 🙂 Tom Onwards and Upwards x

[VickiParticipant]

Yes ted, keep the fluid intake up!. Helen's description of the light chains was much more eloquent…….medical background see!

Good lick with your results ted and no need to beat the 31000 record!

Vicki and Colin x

[teds31Participant]

Thanks David and Tom, I will keep drinking, I will have to wait for the results Vicki 7 weeks to go, its the waiting thats hard,always tests and then the long wait for results, I've said on here before that I dont think about it much until it comes to a week or so before an appointment then I worry. Thanks every one as usual you come up trumps.A few days off as we are going to see some friends in Middlesbrough for the weekend, TaTa for now. Ted

[HelenParticipant]

Better pack the snow shoes Ted, and the thermals it's nippy up here.
Love Helen

[teds31Participant]

Yes Helen just seen the weather forcaste not what you call good still there are worse places to be snowed in, and they usually have plenty of red in. Ted.

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