Sounds like a healthy mindset - good for you. I'm a coach,and I always tell my players to focus on the "controllables." Personally, I need to improve in that area!
Good luck on your path, Jason!
Forums
-
ricejon - Name: Jon
- Who do you know with myeloma?: mgus (self)
- When were you/they diagnosed?: 2016
- Age at diagnosis: 47
Re: Starting on the MGUS road - how worried should I be?
Thanks, Ricejon. It's definitely about doing what you can do and trying not to worry about what you have no control over!
I got my bone marrow biopsy results today. The haematologist said they basically reflected the low levels of the M-protein, with 3% plasma cells.
She also got my serum free light chain assay with the results as follows:
Free kappa light chains: 8.4 mg/L (3.30 - 19.40)
Free lambda light chains 65.3 mg/L (5.71 - 26.3 ) HIGH
Free kappa/lambda ratio 0.13 (0.26 - 1.65) LOW
She said she was happy enough with these, she'd be more worried if the lambda light chains were around the 1000 mg/L level.
But I have to admit, I'm a little worried about these results, and it shows my ratio is low and my lambda light chains are high. Should I be worried about this?
In general, her opinion is that I basically have MGUS, but the levels / results are low and she's happy about that. She's going to get a skeletal scan just to add to my 'baseline' and then will bring me back in 6 months for a second set of blood tests to see how they compare.
She's also sending me to an immunologist as my IgG levels are low, and she thinks I might have common variable immune deficiency (CVID), but the immunologist will know more about that and decide what to do about it. Rightly or wrongly, I'm treating the possible CVID as far less worrying and just something to manage, but without the sort of potential that MGUS could have.
Hope all of this makes sense; please let me know of your thoughts/comments, I'd appreciate it.
Thanks.
J.
I got my bone marrow biopsy results today. The haematologist said they basically reflected the low levels of the M-protein, with 3% plasma cells.
She also got my serum free light chain assay with the results as follows:
Free kappa light chains: 8.4 mg/L (3.30 - 19.40)
Free lambda light chains 65.3 mg/L (5.71 - 26.3 ) HIGH
Free kappa/lambda ratio 0.13 (0.26 - 1.65) LOW
She said she was happy enough with these, she'd be more worried if the lambda light chains were around the 1000 mg/L level.
But I have to admit, I'm a little worried about these results, and it shows my ratio is low and my lambda light chains are high. Should I be worried about this?
In general, her opinion is that I basically have MGUS, but the levels / results are low and she's happy about that. She's going to get a skeletal scan just to add to my 'baseline' and then will bring me back in 6 months for a second set of blood tests to see how they compare.
She's also sending me to an immunologist as my IgG levels are low, and she thinks I might have common variable immune deficiency (CVID), but the immunologist will know more about that and decide what to do about it. Rightly or wrongly, I'm treating the possible CVID as far less worrying and just something to manage, but without the sort of potential that MGUS could have.
Hope all of this makes sense; please let me know of your thoughts/comments, I'd appreciate it.
Thanks.
J.
-
Jasonb - Name: Jason
- Who do you know with myeloma?: Me - IgA MGUS
- When were you/they diagnosed?: January 2017
- Age at diagnosis: 43
Re: Starting on the MGUS road - how worried should I be?
Hi Jasonb,
Remember that the odds of MGUS turning into multiple myeloma are just 1 to 2 percent year on average, and even in the few cases where it eventually progresses to myeloma, it can still "smolder" for a long time and not affect you in any appreciable way.
Also, as in my case, since I was following my MGUS frequently, when I finally got the diagnosis of multiple myeloma, there was no real damage done to my body, except for some compression fractures, which will heal. So I can start treatment to get rid of the bad guys in my blood before they do anything really awful to me.
The moral being, for you, if you are getting tested frequently, you will catch it quickly if it ever becomes multiple myeloma, and get treated before it really hurts you.
Remember that the odds of MGUS turning into multiple myeloma are just 1 to 2 percent year on average, and even in the few cases where it eventually progresses to myeloma, it can still "smolder" for a long time and not affect you in any appreciable way.
Also, as in my case, since I was following my MGUS frequently, when I finally got the diagnosis of multiple myeloma, there was no real damage done to my body, except for some compression fractures, which will heal. So I can start treatment to get rid of the bad guys in my blood before they do anything really awful to me.
The moral being, for you, if you are getting tested frequently, you will catch it quickly if it ever becomes multiple myeloma, and get treated before it really hurts you.
-
bodumene - Name: bodumene
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: January, 2017
13 posts
• Page 2 of 2 • 1, 2