Hey there @elipt66 i know this is a bit of a late reply, however I only just found and registered for this forum…anyway, reading through your post what came to mind was POEMS syndrome… have you heard of that? I hope you’re doing ok.
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Hi @LetsGoMGUS a great big welcome to our forum, I am glad that you have found us.
Is the POEMS syndrome something you have been diagnosed with?
I look forward to hearing more about you.
Look after yourself
Hi there @Erica
Thanks for your reply. I am developing POEMS syndrome which is (from what I understand) unique to IgG Lambda…? Being a Paraneoplastic syndrome, there’s lots of other organ/tissue involvement, hence why it’s making me unwell/losing function (organs and functional capacity).
The M spike is also climbing relatively rapidly and gaining momentum, as is the steady decline in IgA (I’m very low in IgA, so I have two involved - IgG and IgA; IgG being the M protein manufacturer and IgA being crowded out).
Lambda is higher each test, but not yet over 100, however kappa is increasingly lower at each test. My K/L ratio is way outside of norm (very very low).
I have nearly all of the genetic markers for developing myeloma within a couple of years so says the haematologist, and apparently these also tell him it’ll be a more aggressive and harder to treat/quicker to relapse version.
Not to worry - I’ve literally had worse things to deal with than this hanging over my head 
I don’t feel like it’s a problem, because I have read widely about these conditions, the genetic factors, and the treatment options (all scientific publications including the results data, for quality purposes), and have developed my own timeline and treatment options which in turn provides clear planning for whatever comes up next (POEMS will have the same treatment as Myeloma - the only difference being plasma cell marrow %/plasmacytoma development, or it being called POEMS - I’m still just under 10% in bone marrow as of last November 23, so more likely POEMS is winning the race at this time).
I have an undergrad degree in allied health, and I’ve done quite a bit of research as a consumer/patient associate researcher (in areas like immune cell treatments, cancer, and genetic carrier systems like the ones used in some vaccines) so chewing through and interpreting the data is relatively easy and which gives me a better ability to project future outcomes, and results in better planning.
I kind of see it as a slow burn that I just watch the flame, and get the fire extinguisher as needed.
I am being monitored each 2-3 months now, by a haematologist, cardiologist (implanted cardiac monitor due to heart function changes/ventricular tachycardia), nephrologist (ckd), pulmonologist (supplemental oxygen + mechanical ventilation), immunologist (low IgA increased susceptibility to infection), and I’m trying to find a neurologist to review both peripheral and autonomic neuropathy since here in Au no neurologist is really interested in POEMS thus far, and shows me the door. All of the specialists are privately accessibly only - very expensive, but if you have rare disease here, you need to be prepared to be frugal and spend lavish amounts on precious minutes with these guys. In the last two years, I could have bought myself a lovely brand new car for what I have spent on specialist appointments.
Not to worry. It is what it is
Anyway, the plan is to keep as much mainstream activity as possible (ie: study and work), and dip my toes into the treatment intermissions as needed.
Wishing you well, and I hope you have a lovely day.
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Wow @LetsGoMGUS you lost me with your technical information completely, but your background certainly seems to explain why interpreting data is relatively easy for you.
Although I have a different blood cancer, and I do not have POEMS, I do have the a leaking aortic valve, CKD, lung damage (I do not have oxygen) etc.
Can I ask if you are in the UK?
What a good idea to try and keep as much mainstream activity as possible, look after yourself.
I’m sorry to hear that @Erica regarding the type of cancer you’ve got and the organ effects it gives. Did your secondary symptoms (organ effects) slow down or improve after treatment (if you’ve received it)? I hope so.
I live in Australia, however I was born in the UK. I have been back, and feel much more at home there.
Yes, I think that having something to aim for even when times can be a little uncertain can give a sense of direction when most other things are like jigsaw pieces freshly tipped out of the box
However this is still somewhat predictable and slow-ish in progress in the grand scheme of things, so I usually put it on the back burner and tend to only think about it when I’m having a bad day and not able to do much (say, if the night sweats cause significant fatigue the next day), or when I’m at the haematologist.
Otherwise, it’s business as usual…study, research, running the house, and up till recently, servicing and maintaining my car in my own garage (I just recently stopped since I can’t hold the tools in my hands or get up off the floor these days…my mechanic is happy that when I bring it, he doesn’t need to find the problem because it arrives with a note describing exactly what needs fixing, complete with its spare parts and the unique tools if required 
)
Not to worry - life changes and part of the job is to change with it I guess.
Have a lovely evening, and I hope the end of summer is still bringing those warm long days.
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You paint a lovely picture @LetsGoMGUS .
I have not had treatment but all other conditions arrived well after my Chronic lymphocytic leukaemia (CLL) diagnosis.
My first half century before my diagnosis I was as fit as a fiddle!!
I love you delivering your car to your mechanic with a note of what needs fixing, spare parts and unique tools.
Take lots of care in Australia
Sorry to hear the comorbidities piled on after your diagnosis of Chronic lymphocytic leukaemia (CLL) @Erica - these changes sound very similar to my own situation where I was fine till then I wasn’t, then everything else starting falling over!
Hehe.
Yes my mechanic often says I’m welcome to don my overalls and pop down anytime to lend a hand!
A while back, was on my way back to my car after the last bone marrow biopsy, and a guy had his car break down at the exit when he stopepd it and put it in park at the barrier to pay - nobody could get out - so I had a bit of a gander and found the problem, got it mobile so it could roll out of the high rise car park exit driveway. He didn’t speak English and so he couldn’t explain the symptoms of the problem, so I called his mechanic (using google translate!) and asked him to send a tow truck after I explained the problem (broken park sensor/switch on the gearbox overriding the starter motor not allowing it to start - I released the box using the tow release, which is for use when an auto box is in park without the keys, but needs to be moved), and he asked me to come down and do a trial for a week - he wanted to hire me as a mechanic
These days I only grab the tools when absolutely needed, but I do enjoy fixing things, or at least finding the problem.
Better than worrying about Monoclonal gammopathy of unknown significance (MGUS)/POEMS while I’m still somewhat mobile
Rambling here…!
Hope your day goes well.
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Hi LetsGoMGUS 
I have heard of POEMS, but haven’t read about it yet. I definitely will do.
It’s weird, maybe I have the start of something, or maybe not. With IgG Lambda, but now also the Kappa is considered high. I have to look at results again, because to me - I don’t understand how the FLC ratio is slightly higher, not much. But as both Kappa and Lambda are elevated… add to it, the positive ANA… well, I have no clue. (Summer heat has distracted me too much 
)
I’m reading more what you wrote below, which is very helpful!
You’ve been going through a lot. Please let us know how you are doing!
All the best day and week ahead for everyone! 
-Elizabeth
Hi there @elipt66
Yes it’s a bit intriguing, POEMS
That’s really interesting, what’s happening with your kappa increasing… sometimes from what I have read (and I may be wrong here!) is that increased kappa that isn’t usually the involved light chain (say, in the instance of IgG lambda monoclonal gammopathy), that it might be due to increased inflammation or underlying infection…?
I found info in these articles (titles instead of links - I wasn’t able to add links, sorry about that)
Polyclonal serum free light chain elevation is associated with increased risk of monoclonal gammopathies
I have had kappa increases over time, and I always try to gauge the consistency before assuming what the cause may be… eg: I get another test done for FLC’s in 2-3 months, so observe a trend (if it’s there), and I have also experimented with taking a broad spectrum antibiotic in the interim to see if that results in a lower kappa measurement (knowing I’m IgG Lambda type Monoclonal gammopathy of unknown significance (MGUS)) in the instance the elevation in kappa was due to underlying infection.
That’s also interesting that ANA is positive…that can happen as an unspecific marker for an autoimmune disease (of which many have been shown to be associated with Monoclonal gammopathy of unknown significance (MGUS):
Association Between Autoimmune Diseases and Monoclonal Gammopathy of Undetermined Significance: An Analysis From a Population-Based Screening Study
however false-positive ANA is also associated with infection and certain medications: What does a positive antinuclear antibody mean? Hoang medical group.
Seems like this is a really good time to have a closer look at what’s happening and do some more tests…?
I hope the summer is enjoyable there? It’s getting hot, dry, and very windy here already in the first days of spring - I think it’ll be a hot dry summer on the way.
I’m doing ok thanks
Just has more injections into my spine to help with the inflammation around the nerve roots, which hopefully will make it easier to walk with less pain and more strength down my legs, and supplemental oxygen 24/7 is really helping keep up good oxygen levels in blood which means I am nowhere near as fatigued as before, and the heart rhythm issues are nowhere near as intrusive (read: not passing out anymore) which is lovely!
I’m trying a new cream to treat the peripheral neuropathic pain, which has capsaicin in it… it works on and off, but the not so wonderful side is that if you forget to reapply it within a certain time frame, you get horrible burning and pins and needles! I’m going to have to skill up my time management on that one! Hehe.
Take good care, and it’s lovely to chat with you
I was diagnosed with Monoclonal gammopathy of unknown significance (MGUS), and am frustrated by the doctors’ insistence that there are no symptoms. I have all the symptoms: fatigue, bone pain, nausea, etc. etc. I’ve just had a bone marrow biopsy, and now they’re calling me in because they found something they were not expecting.
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Hi @josie55 a great big welcome to our forum.
It sounds a frustrating and anxious time for you.
Perhaps be pleasantly assertive and have your symptoms clearly written down with your fears, questions and practicalities .
As for the fact that they are calling you in it must be horrible waiting and not knowing.
The Blood Cancer UK support line is there for you on 0808 2080 888 and we are also there for you.
Please do let us know how you get on and in the meantime really look after yourself.
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Hi again,
So I just got the news that I’ve got myeloma. They are going to send me for a whole body MRI to look for bone lesions. I suppose I’m doing ok, as I was sort of expecting this, but it still knd of takes your breath away when you hear the word. I have a very good haematologist, and I"m just hoping I can stay with him as I transition into the treatment phase.
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Hi @josie55
Thanks for sharing what you’re going through. So sorry to hear of your Myeloma diagnosis.
I’m glad you feel that way about your haematologist as it sounds like you’ll feel comfortable talking to him about what’s going to happen next. You sound like you’re coping well and were prepared to hear that news, but it’s no surprise that actually hearing it took your breath away. It can help to talk things through, so please do remember that our Support Services team are here for you. You can speak in confidence to one of our Support Services Nurses by calling our free Support Line on 0808 2080 888 . The details of our opening hours are here: Blood cancer information and support by phone and email | Blood Cancer UK
You may also find this section of our website useful: I’ve just been told I have blood cancer | Blood Cancer UK If you don’t feel ready to take in the information yet, just take it one day at a time and know it’s there if/when you need it.
Take good care of yourself.
Kind regards,
Ali
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Hi @josie55 I am sorry to hear that you have myeloma, perhaps be very kind to yourself and give yourself plenty of time to come to terms with it. My diagnosis took me ages to come to terms with.
I see things very visually and I kept seeing the words in my eyes.
Your haematologist sounds really good.
@Ali_BloodCancerUK has given you great advice.
Please do keep posting and really look after yourself, I will be thinking about you xx
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Thank you. I feel like sometimes I’m coping and then I start losing it entirely again.
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I reckon that’s completely natural @josie55 and you show great personal awareness which is the first step xx