I have been bothered by pain in the rib area since November. It comes and goes. I can go weeks with no pain and then, all of the sudden, it appears. Oddly enough, it started as I was doing the cooldown portion of a workout I did back in mid-November.
The pain is not getting more severe over time – it's about the same. It just keeps going away and coming back on both sides. It's right around where my heart rate monitor and bottom of my bra sits on my ribs. It started out just on my right side, and now there is some pain on the left side, too.
It's weird. All of my lab results throughout the whole time have been stable. My FLC ratio as of this week is 1.89, down from 2.25. My hemoglobin is 13.3 g/dL, my calcium is 9.5 mg/dL (down from 9.9), my creatinine is 0.77 mg/dL (it has been around 0.72-0.78 for years). I am still waiting for my M-spike, but the last one was 1.8 g/dL (18 g/L) back in November.
I am going to have an X-ray done next week and, if that doesn't show anything, I will most likely have a PET/CT scan.
Has anyone had pain like this and had it NOT be lesions?
I'm actually quite sad. I thought I would be smoldering for much longer than this.
Forums
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FingersCrossed - Name: FingersCrossed
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2014 (Smoldering)
- Age at diagnosis: 44
Re: I think my time as a smolderer is coming to an end
Hi Fingers Crossed,
My fingers are sure crossed too. I'm SMM since September 2013, MGUS since May 2009. My labs are higher than yours, and have been ever since my MGUS diagnosis 6 years ago.
A bit over a year ago, I began to have pain in one collarbone, every day, but mostly in the morning. After a year, my onc had it x-rayed and the results said joint degeneration. I'd been doing some construction work on my shed, and perhaps I overtaxed it. I will be getting a CT scan soon (whole body) and who knows - my SMM may come to an end with those results. But though my numbers are (fairly) high (m-protein 2.4, FLC ratio 5, hemoglobin between 11 and 12 for 6 years), I'm still hopeful I can smolder a long time.
There are so many reasons for skeletal pain. With our condition, we always fear the worst. I'm glad you are getting it thoroughly checked out because progression CAN occur without the labs changing.
I hope you get good results. You just arrived at this SMM party - stay awhile!
My fingers are sure crossed too. I'm SMM since September 2013, MGUS since May 2009. My labs are higher than yours, and have been ever since my MGUS diagnosis 6 years ago.
A bit over a year ago, I began to have pain in one collarbone, every day, but mostly in the morning. After a year, my onc had it x-rayed and the results said joint degeneration. I'd been doing some construction work on my shed, and perhaps I overtaxed it. I will be getting a CT scan soon (whole body) and who knows - my SMM may come to an end with those results. But though my numbers are (fairly) high (m-protein 2.4, FLC ratio 5, hemoglobin between 11 and 12 for 6 years), I'm still hopeful I can smolder a long time.
There are so many reasons for skeletal pain. With our condition, we always fear the worst. I'm glad you are getting it thoroughly checked out because progression CAN occur without the labs changing.
I hope you get good results. You just arrived at this SMM party - stay awhile!
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Carol of Eden - Name: Carol
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: MGUS 2009, SMM 2013
- Age at diagnosis: 50
Re: I think my time as a smolderer is coming to an end
Hi Carol,
I hope you get good results on your CT. I was thinking that my calcium levels, at the very least, should have started to rise by now if I had lesions growing untreated for 6 months, but I didn't realize that my labs could stay stable yet progress to symptomatic multiple myeloma. Oh well.
I am going to have an MRI of my ribs this week. There is a possibility it could be costochondritis, so that is what I am hoping for at this point.
I hope you get good results on your CT. I was thinking that my calcium levels, at the very least, should have started to rise by now if I had lesions growing untreated for 6 months, but I didn't realize that my labs could stay stable yet progress to symptomatic multiple myeloma. Oh well.
I am going to have an MRI of my ribs this week. There is a possibility it could be costochondritis, so that is what I am hoping for at this point.
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FingersCrossed - Name: FingersCrossed
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2014 (Smoldering)
- Age at diagnosis: 44
Re: I think my time as a smolderer is coming to an end
Good luck on the MRI, Fingers Crossed. I'd be thinking the same as you – the calcium should show up, but it's really impossible to know if that always holds true.
One thing I have gathered is that there is a gradual (or step-wise) evolution of new subclones, that is new mutations (as detected by FISH testing on bone marrow samples, or genetic profiling) – as the condition progresses. People who have undergone treatment and had remissions sometimes relapse with a different sub-clone of mutant plasma cells, which have different characteristics than the original clone that triggered treatment. Sometimes, they develop "non-secretory" myeloma which does not produce an m-protein. So, hopefully you are NOT progressing, but progression is probably related to the development of new subclones which may produce different lab result characteristics.
I myself had 4% plasma cells at MGUS diagnosis (with M-protein of 1.86 g/dl), then "10-20%" plasma cells at smoldering multiple myeloma diagnosis with M-protein of 2.47 g/dl. So either they hit a dry pocket on the first BMB and my plasma cell percentage should have been higher than 4%, or maybe there was a growth of new plasma cells that do not secrete as much m-protein, or – ? – endless possibilities.
Such a complex disease.
One thing I have gathered is that there is a gradual (or step-wise) evolution of new subclones, that is new mutations (as detected by FISH testing on bone marrow samples, or genetic profiling) – as the condition progresses. People who have undergone treatment and had remissions sometimes relapse with a different sub-clone of mutant plasma cells, which have different characteristics than the original clone that triggered treatment. Sometimes, they develop "non-secretory" myeloma which does not produce an m-protein. So, hopefully you are NOT progressing, but progression is probably related to the development of new subclones which may produce different lab result characteristics.
I myself had 4% plasma cells at MGUS diagnosis (with M-protein of 1.86 g/dl), then "10-20%" plasma cells at smoldering multiple myeloma diagnosis with M-protein of 2.47 g/dl. So either they hit a dry pocket on the first BMB and my plasma cell percentage should have been higher than 4%, or maybe there was a growth of new plasma cells that do not secrete as much m-protein, or – ? – endless possibilities.
Such a complex disease.
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Carol of Eden - Name: Carol
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: MGUS 2009, SMM 2013
- Age at diagnosis: 50
Re: I think my time as a smolderer is coming to an end
Had MRI this morning. No lesions, so that's a great relief! 
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FingersCrossed - Name: FingersCrossed
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2014 (Smoldering)
- Age at diagnosis: 44
Re: I think my time as a smolderer is coming to an end
That's great! So glad to hear the news. What other tests are you waiting on at this point?
Re: I think my time as a smolderer is coming to an end
The only other test I was waiting for was the M-spike and that came in at 1.7g/dL (compared to 1.8 back in November). My beta 2 came in at 1.3 mg/L. So looks like I can stay at the smoldering party longer.
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FingersCrossed - Name: FingersCrossed
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2014 (Smoldering)
- Age at diagnosis: 44
Re: I think my time as a smolderer is coming to an end
Excellent! Very glad to hear the additional news.
How often are you having blood work done to track your M-spike and other markers? It seems like it's only being tested every 6 months or so, and that seems like it's too infrequent.
Hope your levels stay constant for a loooooong time!
How often are you having blood work done to track your M-spike and other markers? It seems like it's only being tested every 6 months or so, and that seems like it's too infrequent.
Hope your levels stay constant for a loooooong time!
Re: I think my time as a smolderer is coming to an end
I'm being tested every 3 months. My onc just forgot to add the serum protein electrophoresis on my February lab order. So technically, yes, I should have had a data point for the M-spike in February. Everything else has been tested every 3 months since diagnosis. So the comparisons I mentioned in my first post for everything except the M-spike are from February.
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FingersCrossed - Name: FingersCrossed
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2014 (Smoldering)
- Age at diagnosis: 44
Re: I think my time as a smolderer is coming to an end
Hey, that's great new FingersCrossed. The smoldering party wouldn't have been the same without you 
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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