Hi, I’m new here, glad to have stumbled upon this forum. It has been very helpful to read about actual experiences from real people!
I’m 42 and live in Australia. I was diagnosed with IgG Monoclonal gammopathy of unknown significance (MGUS) about a year ago and have been on 3 monthly check ups. So far things have been relatively stable, with a slightly elevated FLC ratio hovering around 2 and a slight increase in m protein from 11g/L to 13 g/L over that time (hence the continued monitoring). I haven’t really been experiencing any major symptoms, but my hematologist ordered another lot of tests (more bloods, urine and PET) after I told her about some unusual fatigue and digestive issues I’ve been experiencing.
There wasn’t much change to my bloods other than another slight increase in m protein to 14g/L. Haven’t got the results of the PET yet, but I’m not expecting anything to come of that since I haven’t had any bone pain. My urine test showed a slightly elevated protein level of 60mg/L, but of more concern was detection of Bence Jones protein (not quantified).
My follow up appointment isn’t until the end of November, so of course I have found myself down the google rabbit hole (bad zanzibar!) and getting more and more anxious about what this might mean, as google says it’s unusual for BJP to be present with Monoclonal gammopathy of unknown significance (MGUS) (except for light chain Monoclonal gammopathy of unknown significance (MGUS) which mine isn’t) and is more associated with MM.
So far I’ve been pretty good about keeping a level head about all this, but I can feel myself starting to let the anxiety take over a bit so I thought it might help if anyone is willing to share their experiences with BJP?
I have a different blood cancer but I think a lot of us will be able to relate to how we’ve also found ourselves going down the Google rabbit hole - I know I have.
There is often so much waiting with a blood cancer diagnosis that it leaves time for you to overthink and worry about what results might/might not be showing.
I have posted a link below which is a thread on a discussion around this topic. It may be useful to have a look.
I hope others can share their experiences with you. In the meantime, your appointment is nearly here so I would just write all of your questions down ready for your appointment.
It’s great to hear that you are being monitored closely and tests being done for you. it’s a collection of tests that make up the whole picture.
If you are going to Google use Myeloma Uk as it has most up to date information.
They have many info guides
Infoguide from Myeloma UK
Protein tests on urine
Bence Jones test (urine protein electrophoresis or UPE)
Free light chains in the blood are filtered out by the kidneys (called
Bence Jones proteins) and removed from the body in the urine. They can be measured in the urine using the Bence Jones test, or urine protein electrophoresis. This test works in the same way as serum protein electrophoresis (see page 13), but uses a sample of urine from a 24-hour collection, instead of a blood sample.
Thank you both, that’s very helpful advice and information.
I did do a forum search for BJP before posting, but there wasn’t really anything that relevant to my circumstances, so really just hoping I would get some responses from others with Monoclonal gammopathy of unknown significance (MGUS).
I was probably a little more anxious because my haematologist called on Friday to let me know she would be following up on my PET results but it was likely she would want to see me before our currently scheduled appointment and would have someone from the office call early this week. She called so I wouldn’t worry over the weekend, bless! Because nothing says ‘don’t worry’ like ‘I want to see you more urgently’ lol!
However, I haven’t heard anything from her office since (and they now have my PET results), so I’m going to take that as a good sign and try to stop worrying.
Hi all, just updating after a call with my haematologist today.
She has reviewed all of my recent test results and doesn’t see anything of significant concern. She did note that ‘brown fat’ was detected around my axillary lymph nodes in my PET scan, which she said could be what I’ve been feeling when I’ve thought the lymph node was enlarged. There was nothing to suggest anything abnormal about the lymph nodes themselves, and the ‘brown fat’ is nothing to be concerned about either, so that’s a relief.
She only mentioned the presence of the m protein in my blood and urine samples, nothing specific about BJP. And she’s happy with the current levels for now, but still wants to continue 3 monthly check-ups while there’s that slight increase in m protein, with a view to eventually doing a bone marrow biopsy if the levels continue to increase.
Happy for now, and will try not to think too far ahead! Thanks for your support
