[jlj]

59 years old, diagnosed with MGUS almost a year ago

by jlj on Tue Oct 24, 2017 4:40 pm

Hello.

I am 59 years old, and was diagnosed with MGUS (because of a high protein number in a routine blood test) in November 2016. I am IgG kappa, with an M-spike of 1.6 g/dL (16 g/l) at that time, and a serum kappa-lambda ratio of 7.08. My skeletal survey showed no lesions, and a bone marrow sample showed only 0.1 plasma cells, so after the original scare I settled down and quit worrying about it much, since I felt fine and the only risky result in there was the kappa-lambda ratio. My doctor there did minimal testing in the 9 months after that.

Now I have moved to a major city and am seeing a specialist, and my August (9 months later) blood draw revealed that my serum kappa-lambda ratio has increased to 9.1, which, according to the article I reference below, is an independent risk factor for progression to multiple myeloma, and I now fall into the highest risk group for progression in this analysis, with a 3% risk each year. I am only 59, and I now statistically have a roughly 50/50 chance of progressing to multiple myeloma by the time I am 74.

I have been reluctant to post here or to talk to people about this much at all, because I feel like I may sound whiny. I am still doing fine right now, and probabilities are just that, only probabilities; they are not certainties. But the knowledge that I will probably have multiple myeloma eventually (because I am otherwise quite healthy, and until now expected to have a longer life span) has really hit me hard. And I am scared that I might progress sooner, obviously. I am grappling with my mortality.

I have also read recent research that seems to indicate that the bone marrow of people with MGUS is very different from people without MGUS, and very similar to people with multiple myeloma. That kind of matches my sense of this, how it feels to me – like the big thing, the mutation of a plasma cell, has already happened, and now it is up to me to adjust to this and how it plays out. Which is, actually, a really different way for me to think about myself and my future than I have up till now. So this quiet diagnosis is really rocking my world.

Thank you, Myeloma Beacon, for being here!

Reference:

Rajkumar, SV, et al., "Serum free light chain ratio is an independent risk factor for progression in monoclonal gammopathy of undetermined significance," Blood, Apr 26, 2005 (full text of article)

[Aussie]

Re: 59 years old, diagnosed with MGUS almost a year ago

by Aussie on Wed Oct 25, 2017 7:26 pm

I am not of much help. Sorry. However, I can relate to the emotional state. I was diagnosed with MGUS whilst being 35 and my twin girls only being a few weeks old. I came close to having a break­down.

Medically I cannot share any advice, as I do not know much. The more I read, the more depressed I get. Emotionally I can just share my mantra: 'There is also a possibility that nothing may come of it".

All the best.

[Cheryl G]

Re: 59 years old, diagnosed with MGUS almost a year ago

by Cheryl G on Thu Oct 26, 2017 11:26 am

Welcome to the forum, jlj. I'm sorry to hear about your diagnosis, but it's great to hear that you're working hard to educate yourself about MGUS.

The Mayo Clinic statistics that you mention are the ones cited most of the time when people discuss the probability of people progressing from MGUS from to multiple myeloma. Just so you know, however, there was a more recent study that looked at a broader range of factors that could be correlated with progression. I posted about it in this forum thread:

https://myelomabeacon.org/forum/risk-of-progression-with-mgus-new-czech-study-t8714.html

I think you'll be interested in the study and the discussion about it in the above thread.

Good luck!

[jlj]

Re: 59 years old, diagnosed with MGUS almost a year ago

by jlj on Sun Oct 29, 2017 10:25 am

Thank you, Aussie, for your kind reply; and you are totally right, it is possible that nothing will come of this. I also think about all the brilliant people researching better treatments, and it is also possible that it will be very treatable or even curable if we do progress to multiple myeloma in the future.

And thank you, Cheryl G, for the link to the newer progression study. I think I personally come out with about the same risk of progression, but it depends on their definition of immunoparesis, which I can't really see the specifics of without seeing the actual research paper. I do plan to talk to my hema­tologist next month anyway about the extent to which my normal, polyclonal immunoglobulin is being affected, and to what extent that is impairing my immune response now, so I will understand where I stand with that better soon.

I am so grateful this forum is here!