Hi, I just wanted to check in with my crazy situation...if anyone can try to explain, I would greatly appreciate it.
I had an autologous stem cell transplant 2 years ago this past February. Achieved a very good partial response. On Revlimid maintenance until this past January 1, due to low neutrophil counts. M-spike fluctuated between 0.5-0.7, IgG fluctuated between 14-1500, lambda was anywhere between 1.2-1.3. No anemia, hemoglobin ranged between 11-13, kidney and liver function all okay (creatinine between 0.7 and 1.0)
In January 2014, I wasn't feeling well ... although cancer numbers climbing, but still normal. 2 year checkup, bone marrow aspiration morphology revealed 10% plasma cells, up from 3% the previous year. My doctor would not treat because cancer numbers, although elevated, still normal.
Went for MRI. Spine, PET scan, and complete skeletal x-ray in February and March of this year. All tests came back negative. Still didn't feel well ... tightness, pain,crampng in my legs, arms, shoulders. Had mild but noticeable weakness in shoulder blades and forearms.
Repeated blood tests now reveal that the cancer numbers are out of range, but not crazy high. IgG is now 2000, lambda is now 3.12, M-spike is now 1.24, all in a period of about 2 months.
But here's the "kicker" because I wasn't feeling well, we repeated the bone marrow aspiration, which we had only done 6 weeks prior, which revealed 10% plasma cells taken from the LEFT side of the hip bone. The new aspiration taken from the RIGHT hip bone revealed -- get this -- 85% plasma cells!!! This is a much higher number than when I was first diagnosed, and my IgG was well into the 4000's!!
How is this possible in 6 weeks?!
There is no anemia, hemoglobin is 13.5, neutrophils are about a 1.5, creatinine is 0.8. I now am being treated with a cocktail of Kyprolis, Revlimid (25mg/dy) and Decadron.
My doctor says that the bone marrow test is "patchy" and is not the best test either. You may hit an area where there is more or less than another area. The blood serum is more important.
My contention is if you can't put a significant amount of weight on a test like that, where accuracy is a question, than why do it at all, except to determine diagnosis? How do I overcome 85% plasma cells!
Will someone please explain to me what the hell is going on!!
Thanks, Gary
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Re: Sudden, drastic relapse - how is this possible?
I think your doctor is right about the patchy. I have a tumor in my clavicle and I would assume a biopsy there would be 100% or very near that. I think your blood test are probably a better view of the extent while the biopsy is a guaranteed accurate diagnosis.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Sudden, drastic relapse - how is this possible?
There is no arguing that BMBs are patchy, but that is the biggest discrepancy I've ever heard of between two BMBs. So, I think Wayne is right here about monitoring through serum and urine.
Dare I ask if you are going to get yet another BMB to help resolve this? Can one really have just a marrow patch or two with 85% plasma cells and have the rest of one's marrow be considerably lower?
This also raises a question I've always wondered about. Can one determine through MRI or PET/CT if one has a high bone marrow plasma cell burden (i.e. are there visual, telltale signs of an 85% plasma cell concentration in one's MRI or PET/CT images)? Or, are lytic lesions the only things that can be picked up by MRI and PET/CT imaging?
Wish I could be more help here, rather than just asking more questions ;-(
Dare I ask if you are going to get yet another BMB to help resolve this? Can one really have just a marrow patch or two with 85% plasma cells and have the rest of one's marrow be considerably lower?
This also raises a question I've always wondered about. Can one determine through MRI or PET/CT if one has a high bone marrow plasma cell burden (i.e. are there visual, telltale signs of an 85% plasma cell concentration in one's MRI or PET/CT images)? Or, are lytic lesions the only things that can be picked up by MRI and PET/CT imaging?
Wish I could be more help here, rather than just asking more questions ;-(
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Sudden, drastic relapse - how is this possible?
Thanks for your reply.
After my doctor didn't want to treat me when the marrow aspiration was significantly different from the one the year before (last year first sentence was "no morphologic evidence of myeloma ... no light chain restriction ... there are a few scattered plasma cells ... 3%).
This years 1/28 test, first sentence: "an abnormal population of plasma cell is detected ... they are lambda light chain restricted. Total abnormal population represents .052%, but will most certainly be an underestimate when compared to the morphology".
The morphology revealed 10%. That alone, plus the symptoms I was having, in MY view should have been enough to treat again. My doctor didn't put much weight on the test, saying we might have hit an area where there was more, or less, and that it wasn't the best test. He put more weight on the blood serum, and the negative results on the spinal MRI, PET scan, and full skeletal x-rays, which were all done within the last 6 -7 weeks.
My contention is why put the patient through that if you question the accuracy of the test? I've had 8 of these thingsnow. The other 7 times, I didn't find them to be that bad ... I just lay there, and when it got tough towards the end of the second part, I'd just hold on a little tighter, and it was over, I NEVER moved.
But this time, the P.A. did it, the doctor was instructing her, and that second part, I damn near jumped off the table. I said that I would never do another one again especially if not much weight was put on the results, other than diagnosis. There are plenty of other tests you can do without that one...and NONE of them are foolproof anyway.
What if your numbers are good, the bone marrow dosen't get tested because of that, and the percentage of plasma cells is continually building? How do you know that someone with good scans, and good blood and urine, dosen't have a high amount of plasma cells?
Soooo frustrating, and confusing ... none of this makes sense. Thanks for giving me a venue to vent.
Be well, Gary
After my doctor didn't want to treat me when the marrow aspiration was significantly different from the one the year before (last year first sentence was "no morphologic evidence of myeloma ... no light chain restriction ... there are a few scattered plasma cells ... 3%).
This years 1/28 test, first sentence: "an abnormal population of plasma cell is detected ... they are lambda light chain restricted. Total abnormal population represents .052%, but will most certainly be an underestimate when compared to the morphology".
The morphology revealed 10%. That alone, plus the symptoms I was having, in MY view should have been enough to treat again. My doctor didn't put much weight on the test, saying we might have hit an area where there was more, or less, and that it wasn't the best test. He put more weight on the blood serum, and the negative results on the spinal MRI, PET scan, and full skeletal x-rays, which were all done within the last 6 -7 weeks.
My contention is why put the patient through that if you question the accuracy of the test? I've had 8 of these thingsnow. The other 7 times, I didn't find them to be that bad ... I just lay there, and when it got tough towards the end of the second part, I'd just hold on a little tighter, and it was over, I NEVER moved.
But this time, the P.A. did it, the doctor was instructing her, and that second part, I damn near jumped off the table. I said that I would never do another one again especially if not much weight was put on the results, other than diagnosis. There are plenty of other tests you can do without that one...and NONE of them are foolproof anyway.
What if your numbers are good, the bone marrow dosen't get tested because of that, and the percentage of plasma cells is continually building? How do you know that someone with good scans, and good blood and urine, dosen't have a high amount of plasma cells?
Soooo frustrating, and confusing ... none of this makes sense. Thanks for giving me a venue to vent.
Be well, Gary
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• Page 1 of 1