[angieevangelouParticipant]

Hi

I’ve posted here before but not been on for a while. I was just wondering if anyone had a solitary lytic lesion found on skeletal survey (i had one survey in 2011 which showed a lytic lesion on my skull)and is still classied as MGUS ? My docs say they are just keeping a close eye on me when ive asked about it… I have appointments every three months…I had a bone marrow biopsy in 2011 too but dont know results was just told it was ok ? Im anaemic and have been on iron for 5 months which has raised my hb to borderline aneamic. I usually see a different doctr everytime i go (more often than not a registrar who i never see again. My notes are very often missing as I have several other conditions the more serious ones being MS- PANCREATITIS- PSORIATIC ARTHRITIS-high platelets (had 3 embolisms in brachial artery last year)- am on beta blockers for fast heart rate (unkown cause). Im IgA with a small spike of 6 last time it was done and Serum Free Light Chains of 86 (when tested last year) I just wondered if i should be pushing for more imaging such as MRI (I have MRI’S ON BRAIN AND SPINE FOR MS but dont know if anyone would look for lytic lesions as with MS they are looking for demyelination…I always try to ask questions when at my appts but don’t really get any answers so i thought i’d ask people that may know… MGUS or Smouldering ? Thanks Angelina

[docmikeParticipant]

dear angelina,
Iv seen one criteria for smouldering in which one lytic lesion is “allowed” ;but 2 lesions=active mm
Within an mri there are 2 techniques( T1 and T2) that can be used such that the mri for ms shows the nervous tissue best but NOT the bones ;the alternative method is best in detecting myeloma of the spine (whole body mri is not available in uk yet .
You are the patient and have right to be concerned ,especially if you see a different doctor each visit . the free light chains seem high for mgus also.For further reassurance remember I am a doctor who happens to be a patient and who knows exactly what your concerns are ……
Mike

[angieevangelouParticipant]

Hi Mike
Thank you so much for your reply….it is really useful to me as i didn’t know about the different types of MRI and i am worried that I haven’t had any more imaging since 2011 despite having had bone pain (ribs and hips and lower back) since then (that’s why i first went to doctors in 2010 and led to my MS and MGUS diagnosis) It took a year to get a referral to heamatology with MGUS as my gp was also very ill and i kept asking a series of locums and it never got done !I read somewhere that when SFLC get to 100 it’s worrying ? I haven’t had them done for 4 months as the last registrar said it wasn’t necessary and that it was too expensive. I’ve since had another appointment with a consultant who has ordered them for my next appointment at the end of march which will be 4 months since last one. I also had a fall last october and when i told dr at dec appointment that i was still in pain in my shoulder and arm he said we should x-ray it….Ive just received the x-ray request in post with no covering letter and had to ring to find out when to go and they told me that slip should have been sent to them not me…I am going to go get it done today as i am still in pain…

Thanks again i really appreciate your reply and wish you the very best of luck with your treatment.

Angelina

• This reply was modified 9 years, 10 months ago by  angieevangelou.
• This reply was modified 9 years, 10 months ago by  angieevangelou.

[graham-cParticipant]

Hi Angelina

My own stats are most recently Paraproteins 8.5 and Serum Free Lambda Light Chain 159.2  Another figure of relevance is the kappa/lambda ratio which in my case is 0.03. I am recorded as MGUS intermediate risk.

My understanding is that diagnosis isn’t simply a case of your results being out of range so you must have the illness. Strictly speaking the ‘normal’ figure for PP’s is nil and for my type of FLC something like 29. You’re correct that the 100 result for SFLC’s is relevant as it is considered the point at which it is medically significant. Therefore you can have an out of range result, but it isn’t considered medically significant until it reaches 100. I have seen mention of it going as high as 100,000.

My kappa/lambda ratio is also adverse indicating that my body is creating disproportionate useless fractions of one type of anti-body. I have been aware for a long time that I have a ‘sparky’ immune system.

I am not medically trained and I cannot advise you, and your other diagnosed medical issues and symptoms probably have as much, if not more significance than your blood results. On top of that the main thing they watch out for is the rate of acceleration of your PP’s and SFLC’s. If my figures remain the same, without other significant medical symptoms, then I wouldn’t expect to receive any treatment. They did increase last time but I’m holding my nerve. I don’t think there’s a set figure at which they’d begin treatment and I don’t mind avoiding treatment if it’s going to affect me adversely.

I believe that there are some figures in a standard blood test that might be indicative of bone degradation, such as calcium. Of course your other health conditions are relevant and perhaps more significant. In my case I have lost a kidney to kidney cancer and I always look at my eGFR (kidney function), which is actually surprisingly good. My hospital don’t give me test results easily in case you think I’m particularly well-informed.

Myeloma can affect people in many different ways and your symptoms and current medical conditions will be taken into account alongside your blood results to make a decision as regards treatment.

In my area a GP can book an X-ray for a patient themselves at a local hospital and the patient can just turn up when they like in working hours and it will be done. It’s one thing that works remarkably well. I only say this because just before Christmas I crocked my back badly and could barely walk. My GP decided I must be referred to the Fracture Clinic and they just put the phone down on her. I had come across this attitude at the hospital before which is why I went to my GP and I didn’t ask for a referral. Things got worse but I’m fine now, but with a back that is liable to give way unless I’m cautious.

I like to be well-informed about my results but when it comes to Myeloma it can be easy to read too much into them and they aren’t easy to interpret as everything has to be taken in to account.

[angieevangelouParticipant]

Hi Graham
Thanks for the reply its really helpful to hear other peoples opinons/info. My sflc ratio is abnormal too but not sure what it is…Ive been being treated for anaemia since last august… my calcium and renal function has been fine but one of my other worries is that i am Iga MGUS and i believe that is harder to measure correctly so just blood results dont always show the full picture. I most definitely dont want to have any treatment unless i need it but with my complex medical problems i feel i have to stay on top of all my medical treatments as there is not really any communication between my different consultants and GP’S aren’t what they used to be,they dont seem to co-ordinate care like they used to.Because of the MGUS I cant have any disease modyfying treatment for my MS which continues to worsen so Im really keen to catch MM at an early stage if i can…Im only MGUS but i suppose i am high risk because of the lesion…. I don’t know, it’s all very confusing but Im trying my best to keep on top of it all.
Thanks Again and Good Luck with your health issues…
Angelina

• This reply was modified 9 years, 10 months ago by  angieevangelou.

[graham-cParticipant]

My own very simple view is that the human body is so complex and produces cells by the billion every day and there will always be some defective ones. In the normal course of events this doesn’t matter. No one’s body is perfect and at small levels they will be excreted or not cause any problem. If this blood test were performed on everyone I suspect that there would be many more people diagnosed with MGUS, and bear in mind that quite a few people are diagnosed with myeloma only after they suffer a medical crisis.

If it can be considered good news being diagnosed with MGUS, at least the condition is being monitored before we get to the stage where we may suffer irreversible bone or organ damage, if indeed we ever progress to that stage.

My own belief, which may not be correct, is that paraproteins are complete clonal antibodies and FLC’s bits of antibodies both of which are unable to perform their normal function. Excessive production of these useless cells can have many adverse effects and I have always thought that my immune system was slightly quirky.  I find it easier to think of it this way. My own type and score at the last test was Paraproteins IgA lambda 8.5 (previously 5), SFLC’s serum free lambda 161.6 (previously 159.2) and my kappa/lambda ratio 0.03.

I believe that the ratio is significant because it isn’t unusual to have SFLC’s in your bloods but they’re looking to see if there is an abnormal excess of one over the other, and mine is abnormal, which probably isn’t surprising.

Obviously the fact that you have other serious medical conditions makes your situation complex to an extent I can barely comprehend and your symptoms and treatment will all have to be considered with those in mind. As one example myeloma can give you neurological symptoms that could also be caused by MS.

Personally I would probably ask the Consultant what he thinks might be the underlying cause of the lytic lesion. Even if he can’t say, you can at least pin him down as to which department will be responsible for monitoring it.

[angieevangelouParticipant]

Thanks Graham my next appointment is on 23rd march and im going to ask more questions then 🙂

[graham-cParticipant]

Don’t forget your eGFR ‘angelinaevangelou’. Mine’s 60 though today I was given an updated figure of 65. That’s not particularly good, but with one kidney, it’s quite acceptable and no reason for me to worry. Like most of these readings, unless they start off particularly poor then the significance is if they show a constant trend in the wrong direction. Even 40 would be okay but at that level a downward trend would be more significant. My blood pressure has also improved to 148 which was quite a surprise. Again that’s not good, but it’s better that it was.

My next appointment with the Consultant is on Thursday the 19th March and, though I have been feeling worse just recently, I feel optimistic which is good because I discovered that my TV remote control isn’t waterproof, and it was fun to see the shop assistant’s face when I mentioned it. Being annoyed at having drowned my TV remote it was nice to offset it against a snippet of good health news, though Thursday is the big day for me.

PP’s, FLC’s, Kappa/Lambda Ratio and eGFR are the numbers that give me a snapshot of how I’m doing. Hopefully at worst they’ll just crank up how frequently I have blood tests. If what makes me feel unwell is unrelated then I’m not going to worry.

[graham-cParticipant]

They announced that they were running 1 hour 40 minutes late when I got to the hospital and some people were grumbling but that achieves nothing so I went into a ‘Zen’ state and turned on my i-Pod. Going in to see a Consultant with a grumpy attitude isn’t going to help me get from him/her what I want to know.

As it turned out I was seen by a very perky young registrar and I asked my results and they had done an ‘about turn’ from last time. PP’s 5.1, FLC’s 135, eGFR insignificantly down to 58 and kappa/lambda ratio out of normal range as usual at 0.05. It’s still there but it’s in ‘hibernation’

Strangely enough at that point I would have been happy to leave her to get on with the backlog but I think she wanted to cover my general health and practise her skills, especially as I was probably her most upbeat and cheery customer of the day. I had chatted with a couple of others waiting for an appointment both at a much more advanced state than me and I felt a little guilty just being there.

I was then a little surprised when she put me down to be seen again in October, as usually it’s once a year with blood tests at four monthly intervals. The blood test interval remains the same but I am being seen sooner than last time. I asked her to check but I wasn’t going to create a fuss and, by my own criteria, I had little to be concerned about. Perhaps their guidelines have changed or maybe some other figure was out of range, but I’m not going to be worried about that. In fact, though I’m usually keen to get results, I won’t bother about the interim results before my next appointment.

Any concerns I have will be put away until October.

 

• This reply was modified 9 years, 8 months ago by  graham-c.
• This reply was modified 9 years, 8 months ago by  graham-c.

[yvonneseParticipant]

Hi

<span style=”font-size: 13px; line-height: 19px;”>Does your hospital generally give you all your blood results easily or do you have to prise it out of them? I have been diagnosed as Mgus/ borderline Myeloma since last May and all my consultant will ever give me is my Paraprotein which is 11 at the moment. I generally visit hospital every 10 weeks at the moment. I just wondered because I have noticed that quite a few people seem to have various other results. Do drs not like giving all results in case we may draw wrong conclusions on things? Just wondered .</span>

[CarolsymonsParticipant]

When I was at Ealing Hospital West London I always had to battle the nurse to get a printout of my results, but now I am home in Australia they print them out no problem. I think you should be asking for a printout as it is not just paraprotein that is important. You should be asking about your free light chain ratio too.

Carol

[yvonneseParticipant]

Hi Carol,

Thank you for your reply. When I go back mid May for my results I will ask. Obviously its easy to read information on the internet but without all the facts and figures I don’t know what is relevant to me specifically. I want to be informed about my situation without being paranoid if you know what I mean.  Its me that is having to deal with it and sometimes its easy to let your imagination run away with things.

Many thanks

Yvonne x

[tonyfParticipant]

Leicester Royal Infirmary send me a letter after each consultation, briefly outlining the subjects that we discussed, if any treatments were recommended but most importantly all the blood readings.
In the myeloma diary page 15 there is a chart showing the normal blood readings, so its easy to compare.
Why don’t all hospitals do this. It certainly stops me getting worried.
regards
Tony F

[yvonneseParticipant]

Hi Tony,

Thanks for replying. I am seeing a Haematologist at Nottingham City Hospital. I am usually in and out of appointment in about 10 minutes with just a quick consultation of what my paraprotein has done . I know that there isn’t a lot to be said when you just have Mgus but I do want to have some form of control if possible even if its only by knowing what my various results are.

Thanks for your input

Yvonne

[graham-cParticipant]

yvonnese – you have the right to know the result of any medical test performed on you and it is also NHS and Department of Health policy, and also government policy too.

I have had problems in this area, and my problems have been with LRI Tony, and it is only recently that they have begun sending me a copy of the letter to my GP informing me of results. It nearly ended in court and my experience with kidney cancer and not being informed of things was devastating and I could easily have lost my job over it and died. This is why it’s not a matter for discussion with me, because it is also a legal right.

Having said this, it is better for all concerned, if you can get what you want by charm, and the enthusiastic Registrar I saw on my last visit gave me the four figures at the start of our conversation without problem when I asked – kappa/lambda ratio, eGFR, PP’s, FLC’s. She was a charming young Registrar.

More formally you can send the hospital a Subject Access Request which is a standard letter with a cheque for £10 and legally they must send you the full results. In fact it’s much better for them to tell you the results there and then when they have them on screen than have a nurse go rummaging about in their records several weeks later.

MGUS/Myeloma is a difficult illness to understand, particularly the treatment process and, if you approach the doctor in an agitated or distressed condition, it may have an effect on them. Also I have no doubt that MGUS is less of a priority in their eyes understandably.

The thing is though that knowing the results is helpful to the patient in interpreting any symptoms they may be having and also enable them to ask the appropriate questions. As my PP’s and FLC’s had diminished I had no need to take up more of her time but, perhaps because of her youth and enthusiasm, she wanted to talk longer.

In summary, get the figures you need by charm, if that fails ask firmly and, if that fails, submit an SAR.

[Author]

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