OK, I have done a lot of research on this site and others (have I mentioned that I REALLY like this site and appreciate all of the responses from patients, caregivers, doctors and the Beacon staff).
My understanding is that I have now moved from MGUS to SMM. Not only that, I am high risk SMM (kind of a lot to take in, given the progressing statistics of MGUS compared to SMM).
--Bone marrow plasma cells at 10% (though m-spike at only 1.1 g/dl)
--Abnormal free light chains/ratio
I think/hope it is still early for me. I'm sure many of you have "tracked" your lab results as I do. I realize the next round of testing may be telling, but does anyone know if it is normal to go from .55 m-spike to 1.1 in 15 months and from less than 5% plasma cells to 10% in the same time frame (FLC abnormality has been there from the beginning), or is this an indication I am in the process of progressing to multiple myeloma?
I also have an IgH gene cell rearrangment that was discovered during my initial testing.
Thanks for any thoughts/comments...
Forums
-
MissMolly - Who do you know with myeloma?: Self; Grandfather died from multiple myeloma
- When were you/they diagnosed?: April 2011 MGUS; July 2012 SMM
- Age at diagnosis: 49
Re: Always looking for answers...
MissMolly
Being told you have myeloma or MGUS is never an easy thing. As stated, you were initially diagnosed with MGUS because you a) had <10% plasma cells in your marrow, b) <3gm/dL of monoclonal protein, and c) no CRAB-I symptoms (hyperCalcemia, Renal Insufficiency, Anemia, Boney lytic lesions, and Infections-serious).
More recently the M-spike and percent plasma cells have been increasing. Either by itself is not overly concerning -- sampling error can contribute to small variations in percent plasma cells (in this are 5% a centimeter or so over now you are up to 10%). Your paraprotein can also increase and decrease over time.
In your case, I would continued to monitor (more frequently for smoldering myeloma) every 3 months with a skeletal survery annually. Lastly, have they been checking for your urine M-spike? This would be from a 24 hours urine test.
Your M-spike may stablize again for a good long period of time.
And until you begin to develop CRAB-I symptoms the answer is still to observe.
It is alway difficult to arm chair doctor: But when I hear renal issues and monoclonal disease in the same sentence, it has to be a concern to me. Importantly, the R in CRAB-I has to attributable to the myeloma. So if you have had kidney issues for a years and/or you know that is from diabetes, hypertension or something else, then it does not "count."
Have you had kidney issues for a long time prior to the diagnosis? If not or if your renal function too continues to wane (creatinine increasing and GFR decreasing), it may be worth seeing a nephrologist and considering a biopsy to determine the source of the damage.
Even low levels of paraprotein in specific cases -- Light Chain Deposition Disease or Primary Amyloidosis -- can lead to kidney issues and necessitate therapy.
This tied with the neuropathy -- tingling and numbness -- can also point to underlying issues that may be associated with the monoclonal gammopathy. Or it may be from your previous spinal surgery.
This is not meant to be alarming. It is important to note that these issues may not be related. However, I want to make sure we are "checking under the hood."
Being told you have myeloma or MGUS is never an easy thing. As stated, you were initially diagnosed with MGUS because you a) had <10% plasma cells in your marrow, b) <3gm/dL of monoclonal protein, and c) no CRAB-I symptoms (hyperCalcemia, Renal Insufficiency, Anemia, Boney lytic lesions, and Infections-serious).
More recently the M-spike and percent plasma cells have been increasing. Either by itself is not overly concerning -- sampling error can contribute to small variations in percent plasma cells (in this are 5% a centimeter or so over now you are up to 10%). Your paraprotein can also increase and decrease over time.
In your case, I would continued to monitor (more frequently for smoldering myeloma) every 3 months with a skeletal survery annually. Lastly, have they been checking for your urine M-spike? This would be from a 24 hours urine test.
Your M-spike may stablize again for a good long period of time.
And until you begin to develop CRAB-I symptoms the answer is still to observe.
It is alway difficult to arm chair doctor: But when I hear renal issues and monoclonal disease in the same sentence, it has to be a concern to me. Importantly, the R in CRAB-I has to attributable to the myeloma. So if you have had kidney issues for a years and/or you know that is from diabetes, hypertension or something else, then it does not "count."
Have you had kidney issues for a long time prior to the diagnosis? If not or if your renal function too continues to wane (creatinine increasing and GFR decreasing), it may be worth seeing a nephrologist and considering a biopsy to determine the source of the damage.
Even low levels of paraprotein in specific cases -- Light Chain Deposition Disease or Primary Amyloidosis -- can lead to kidney issues and necessitate therapy.
This tied with the neuropathy -- tingling and numbness -- can also point to underlying issues that may be associated with the monoclonal gammopathy. Or it may be from your previous spinal surgery.
This is not meant to be alarming. It is important to note that these issues may not be related. However, I want to make sure we are "checking under the hood."
-
Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Always looking for answers...
Dr. Shain,
Thank you for jumping in to offer your observations and thoughts. The contributions you doctors make to these forum posts are invaluable and so much appreciated.
I did an initial 24-hour urine, but it has never been repeated. It is my understanding that there was no protein in my initial 24-hour urine. My renal results, although in many aspects out of normal limits, are not yet ringing any alarm bells among my doctors -- at least not enough for anyone to discuss them with me. I did see a Nephrologist prior to being worked up for the MGUS, but once he referred me to a hematological oncologist I never saw him again.
I'm trying to get included in an additional NIH study -- the Imaging Study -- because I think I now need a more detailed follow up, especially given the steady increase to the right of my results and reaching the 10% threshold on the BMB. Military medicine does a lot of things very well, but tracking & treating (pre)cancer is generally not one of those. My hematological oncologist should now have a copy of the most recent NIH results, but hasn't contacted me to discuss or follow-up (I expected she would) and I've only had one brief appointment with her since transferring here this summer. I think this is one of those areas where consistency of care is so important and just isn't possible because we all move frequently. I track my results very carefully (like many, I created a spreadsheet). My prior doctor was great about giving me the detailed results.
I think, though, if I don't get accepted for the Imaging Study that I will ask my oncologist to do some further imaging.
Thank you for jumping in to offer your observations and thoughts. The contributions you doctors make to these forum posts are invaluable and so much appreciated.
I did an initial 24-hour urine, but it has never been repeated. It is my understanding that there was no protein in my initial 24-hour urine. My renal results, although in many aspects out of normal limits, are not yet ringing any alarm bells among my doctors -- at least not enough for anyone to discuss them with me. I did see a Nephrologist prior to being worked up for the MGUS, but once he referred me to a hematological oncologist I never saw him again.
I'm trying to get included in an additional NIH study -- the Imaging Study -- because I think I now need a more detailed follow up, especially given the steady increase to the right of my results and reaching the 10% threshold on the BMB. Military medicine does a lot of things very well, but tracking & treating (pre)cancer is generally not one of those. My hematological oncologist should now have a copy of the most recent NIH results, but hasn't contacted me to discuss or follow-up (I expected she would) and I've only had one brief appointment with her since transferring here this summer. I think this is one of those areas where consistency of care is so important and just isn't possible because we all move frequently. I track my results very carefully (like many, I created a spreadsheet). My prior doctor was great about giving me the detailed results.
I think, though, if I don't get accepted for the Imaging Study that I will ask my oncologist to do some further imaging.
-
MissMolly - Who do you know with myeloma?: Self; Grandfather died from multiple myeloma
- When were you/they diagnosed?: April 2011 MGUS; July 2012 SMM
- Age at diagnosis: 49
Re: Always looking for answers...
Sorry, forgot to address one of your questions: kidney issues have shown up in the last 2-3 years.
-
MissMolly - Who do you know with myeloma?: Self; Grandfather died from multiple myeloma
- When were you/they diagnosed?: April 2011 MGUS; July 2012 SMM
- Age at diagnosis: 49
Re: Always looking for answers...
Miss Molly - What is your creatinine level? My Myeloma was discovered when investigating why my Creatinine was up around 3.4 mg/dL. My Light Chains were also way out of whack - with Lamba at 44.3 mg/DL (versus normal of 0.02-0.67). I started a course of Veclade, Cytoxan, and Dex immediately - the creatinine initially rose to over 4, but then dropped rapidly to 1.5 and has been there for the past few months. Still above normal, but far better than nephrologist and oncologist expected it to recover.
Light chains were likely causing the impaired kidney function - which some doctors believe is permanent damage. In my case the quick treatment seems like it minimized the damage and got the Creatinine levels down to a more acceptable level.
Also, M-spike is now gone and BMB shows no abnormal plasma cells! 6 months and counting!
Light chains were likely causing the impaired kidney function - which some doctors believe is permanent damage. In my case the quick treatment seems like it minimized the damage and got the Creatinine levels down to a more acceptable level.
Also, M-spike is now gone and BMB shows no abnormal plasma cells! 6 months and counting!
-
MGLarson - Name: Marvin
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2011
- Age at diagnosis: 40
Re: Always looking for answers...
Marvin, so happy to hear how well you are doing! I have several renal values above or below normal, but none by a lot yet. Creatinine has been between 1.04 and 1.1, so still well below the CRAB threshold value of 2.0, but consistently above the reference value of 0.6-1.0. GFR is consistently high 40s/low 50s. Urea nitrogen is always high (23-27).
-
MissMolly - Who do you know with myeloma?: Self; Grandfather died from multiple myeloma
- When were you/they diagnosed?: April 2011 MGUS; July 2012 SMM
- Age at diagnosis: 49
16 posts
• Page 2 of 2 • 1, 2