This topic contains 99 replies, has 13 voices, and was last updated by 
dickb 4 years ago.
All,
I am newly diagnosed and have my initial results of which i am a little confused. I would appreciate any comments from the forum good or bad.
Urea : normal
Liver : normal
bone : normal
blood : normal
beta 2 : 4.2 mg/L
flc kappa 4120 lambada 7.81 ratio 527
iG 22.5
ldh : 486 iu/L
Unfortunately i have lesions in my right arm, ribs (several he would not tell me how many i did push him) and a couple in the skull ( barely noticeable he said)
i was just wondering if anyone new generally how this looks my consultant described this as stage 2 but with the lesions i find it confusing.
Best regards,
Stanley
Morning Stanley,
I’m afraid you’re going to be on a very steep learning curve about MM as we all were. on the figures you’ve shown, the important ones are the IgG and Kappa. Both give an indication of the level of MM you have and the IgG shows the type. This is an Immunoglobulin, a type of anti body that fights infection. I am not sure but I believe it is the one that fights coughs and colds in particular, hence the need to avoid infections as they can easily turn into Pneumonia.
The ratio of the Kappa figure against the Lambda figure is important because it gives an indication of the level of Myeloma you have, you need to speak to your consultant as to how the ratio works. Although I have had Urine tests, my consultant relies on blood analysis rather than urine as an indicator. Other figures you need to be aware of are the total number of white cells in the blood (leukocytes) heamoglobin and platelets. All 3 give a good overall indication of the level of MM.
As for the lesions, they are a side effect of the MM as a particular protein that attacks bone is over produced. I’m sure your Consultant has told you they can be treated. Anyway, the best thing is to read up but don’t believe all the scare stories on the internet, contact the MM nurses on this site and contribute. There are plenty of people who have gone through what you are goindg through and will offer personal knowledge. Chances are whatever you have, someone else has already had it.
Welcome to the club no one wants to join.
Hi Stanley, I agree with dick if you phone the helpline you can discuss/get advice/have it all explained with an expert – you can never fully quiz consultants until you have straight in your mind and I have often gone over my results with the helpline to get my head round it all. My understanding of staging is that it is now based on beta-2-microglobulin and levels of albumin. Stage 2 is beta 2 >3.5<5.5 – in the old staging more factors were looked at including bone damage but to be stage 3 you had to have 3 or more areas of bone destroyed. Stage 2 was more or less classed as between stage ! and 3 rather than specifics. Staging can help determine prognosis but my consultant doesn’t seem to find this helpful as there are lots of new drugs that are game changers re prognosis. I have light chain – the ratio is very important as it determines the level of activity and basically your aim will be get it back in normal range and normal ratio this is kappa – between 3-19 and lambda between 5 – 26. Thumbnail is I kappa to 1.5 lambda. The normal ratio is between 0.26 – 1.65 (dividing K by L) Outside the ratio and it is active. After each cycle you will know how much your light chains have decreased – this was always my main focus. It is very good that your kidneys have not been effected and I believe when you start zometa your bones will strengthen etc. Sorry you got the CDT in the trial but altho its the old standard it is well proven – people have got as much remission from just CDT as others have got from SCT – I believe it’s quite a harsh regime (I had velcade/dex cos of kidney damage) but its not forever and this time next year you will have CDT and SCT under your belt, be in remission and everything in life will seem that much better and you will be looking forward to the best summer ever – grass greener- flowers brighter – wife even more beautiful – low stress levels – knowing what’s important in life. It is a roller coaster ride make no mistake but when you’re going up it’s great.
Stay strong,
Rebecca
Richard/ Rebecca,
Took your advice and phoned the helpline she confirmed kappa very high in the thousands but she has seen this before and treatment will lower this. I have lots of positives in most of my results so just need to concentrate on the couple of areas of concern. Rebecca i am already looking forward to better days ahead after treatment especially Cornwall for beautiful scenery and costal walks and Greece for a stress free relaxing time (think wife will need it more than me).
Richard i was fascinated by the melton mobray thread i have just got back from a weekend with relations who have lived in melton for quite a long time. They build and extension 10 years ago and the concrete floor had to have a gap in it due to the presence of radon. All seems very suspicious.
Best regards,
Stanley
Hallo, All.
I’m slowly getting my head round what the readings/ figures mean that I receive after each clinic visit in the copy of the G.P.s letter from the consultant. Although interesting, I don’t quite know what steps I need to look at taking to improve any of these, apart from following the advice and taking medication as provided. I see – and I am not being critical in any way whatsoever – remarks such as above ” need to concentrate on the couple of areas of concern “, what I don’t understand is what can one do to improve these areas. Am I missing something ? I am in the situation of CDT plateued, Velcade ineffective, and am now on Revlimid, ( 1st cycle ) and am quite nervously waiting for the next clinic a week on Thursday, so any thoughts on this will be much appreciated.
Regarding Melton Mowbray, I live there, and keep meeting fellow sufferers or relatives, there seems to me to be a lot or us for a fairly small market town
regards, Jeff
Hi Jeff.
We were looking at Revlimid as a new treatment for me as the SCT didn’t seem to be too succesful. What we found out is that it is believed to be very effective when used with dexy and has very few long term effects such as secondary cancers. It is very very expensive, In Germany the cost I believe is 7000 euros for 1 months course, not bad considering it is developed from Thalidomide which has been around for ages and virtually given away in the early 60’s.
As for Melton, keep digging, the more you find out, the more it seems there is something there. Perhaps we ought to start a ‘Lived in Melton” thread just to see how many have a connection to the place.
Richard
Jeff,
What i meant was identifying and understanding my individual results. This i’m Trying to do via research and reading the forum. Then when i meet the consultant i can question him on my progress i have made in those areas. If you look at my kappa reading and ratio they are extremely high (I would be interested if anyone registered here has had a higher one) but my consultant tried to skip over this . I will be better prepared for my next visit in 10 days. In closing i am at the start of journey if CTD is not progressing i have the option to challenge the use of other drugs not offered at initial stage as i am very lucky to be in BUPA . I have chosen the NHS based on advice from forums but have already spoke to my consultant on day one about drugs paid for like revlimid covered on my policy. The comments were personal to me don’t worry Jeff you have not missed anything.
Richard
I would not qualify for your lived in melton group but could be invited as an associate member due to the frequency of my visits to great relatives of my wife.
Best regards,
Stanley
Hi all,
Just had my first results with bloods taken at 8 days on CTD.
kappa 4120 down to 1164 Lambda 7.81 up to 9.70 ratio 527.53 down to 120.
On the face of it very promising start.
Best wishes to all,
Stanley
Wow that’s great news – didn’t know CDT worked that quickly – you must be well chuffed with those results. Hope you plan a celebration this weekend.
Rebecca,
I am very pleased along with the improvement generally after the first week severe back and chest pain. My consultant offered my liquid morphine but i decided not to take him up on it. My tumour also seems to be visibly shrinking. I’m sure there will be setbacks but at the moment all is good. I may sneak a glass of red at the weekend or two as suggested.
Best regards,
Stanley
I think they only tell you to lay off the booze in case it makes you extra dizzy with low BP side effects etc – I drank – very moderately throughout – only 1 glass of red per session – and now feel positively drunk on a 2nd glass of wine! used to guzzle it like a fish but now I enjoy just a bit and savour it – even new habits are hard to break!
Rebecca,
I’m thinking of starting my own Resveratrol trial on my own lol,not sure how much you need to drink to kill enough Myeloma cells though.
Regards,
Stanley
All,
I said there would be setbacks but i thought it would last more than a day. Hospitalised due to major allergic reaction to allopurinol and co trimoxazole. Funny i’d been taking them for over 2 weeks then out of the blue whole torso and arms covered with massive raised wheals. Reading many others experiences on the site i should have been prepared for the unexpected. I stand a little more apprehensive for the coming weeks and months.
Best wishes to all,
Stanley
Hi Stanley, I was allergic to alluprenol (apparently the only drug I should always be on for my kidneys!) Quite frightening with the rash everywhere – we thought it was meningitis! took weeks to go but only had “symptoms” for a couple of days. Apparently its a well known side effect but wish we’d have been given the nod beforehand as it was really scary. No red wine for you then!
Rebecca
Hi Rebecca,
Hope you are well. I was wondering what they gave you as a substitute for the alluprenol. I have been given dapsone but have to wait for enzyme results from the hospital before i can start the course. Other than that rash has completely gone as quick as it appeared 24 hours.I can still feel that glass getting nearer maybe tomorrow(no more incidents permitting).
Best regards,
Stanley
The topic ‘Initial diagnosis’ is closed to new replies.
