I was diagnosed February 2013 with IgA lambda multiple myeloma with multiple broken ribs. Had a stem cell transplant in June 2013 and up until recently have been in remission.
I've had hypogammaglobulinemia almost consistently since, low WBC and RBC, but not excessively low. Platelets have been low normal up until recently.
Kappa / lambda free light chain ratio has been below normal consistently with a few exceptions. Kappa has been mostly 2 mg/L, lambda was in range up until November 2015, when my kappa registered at 12 mg/L and lambda 45 mg/L. That actually put the kappa / lambda ratio normal, so not a big deal.
Unfortunately, kappa has consistently fallen back to 2 mg/L and lambda has increased to 644 mg/L.
Serum protein electrophoresis shows abnormal, but all of the globulins are either in range, or below range.
Total Protein 6.4 g/dl (6.0-8.0)
Albumin 4.40 g/dl (3.40-4.90)
Alpha 1 0.28 g/dl (0.17-0.50)
Alpha 2 0.68 g/dl (0.55-1.00)
Beta 0.56 g/dl (0.65-1.10)
Gamma 0.47 g/dl (0.70-1.6)
Immunofixation: Band seen with bound lambda only. No corresponding band seen with heavy chain (immunoglobulins). Refer to free light chain quantitation.
The problem is my platelets. CBC is mostly low normal, HGB is great. But my platelets have dropped to 65 (x1000/mcl).
Immunoglobulins are all low.
IgA 38 mg/dl (70-400 mg/dl)
IgG 490 mg/dl (700-1600 mg/dl)
IgM <19 mg/dl (40-230 mg/dl)
My hematologist thought I was presenting with free light chain escape and last week I started Kyprolis. Then the results from my bone marrow biopsy came back with no evidence of residual plasma cell myeloma by morphology. Roughly 1% plasma cells in a 50% cellular marrow by morphology. No evidence of increased blasts, clonality, or lymphoproliferative disorder by flow cytometry. Mild normocytic and normochromic anemia. Moderate thrombocytopenia. No evidence of myelodysplasia and Congo red stain is negative.
My hematologist was surprised that nothing showed up in my bone marrow biopsy. He has reached out to the specialist at Cedars Sinai who I saw last month, but hasn't heard back from him. In the meantime, Kyprolis has been put on hold.
There is very little information on serum free light chain escape. Could it be this based on all of the information above?
My maintenance was Velcade every other week until May, when it was increased to every week, 20 mg dex added.
PET/CT showed a very small uptake in the left iliac, for which an xray cleared.
Is there more information on serum free light chain escape that I'm missing?
Waiting for FISH. and other deeper test analyses.
Forums
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
Re: Free light chain escape: am I experiencing it?
Hi Carol,
I trust that you had an IgA M-spike before your treatment, but now you don't have one now ... right? Free light chain escape (LCE) is basically where a new myeloma subclone develops at relapse and the new subclone only emits free light chains with no associated immunoglobulin M-spike. LCE affects about 20% of IgA patients that relapse. It is less common in IgG patients.
I'm wondering if your bone marrow biopsy results may be due to a less-than-perfect sample that didn't catch any of the disease burden? Bone marrow biopsies can be hit and miss affairs since the disease isn't always spread out evenly throughout one's bone marrow.
Please let us know what the Cedars Sinai specialist has to say and good luck.
I trust that you had an IgA M-spike before your treatment, but now you don't have one now ... right? Free light chain escape (LCE) is basically where a new myeloma subclone develops at relapse and the new subclone only emits free light chains with no associated immunoglobulin M-spike. LCE affects about 20% of IgA patients that relapse. It is less common in IgG patients.
I'm wondering if your bone marrow biopsy results may be due to a less-than-perfect sample that didn't catch any of the disease burden? Bone marrow biopsies can be hit and miss affairs since the disease isn't always spread out evenly throughout one's bone marrow.
Please let us know what the Cedars Sinai specialist has to say and good luck.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Free light chain escape: am I experiencing it?
Thank you for responding Multibilly.
Yes, at diagnosis my M spike was 1.5 IgA lambda, 90% bone marrow burden. This bone marrow biopsy sample was adequate to do lots of testing, but my doctor suggested that perhaps it was a false negative.
As of Wednesday, he hadn't heard from the specialist. I just put a call in to them, but not sure I can prompt the doctors to talk with one another.
The question I have I guess is, if there's no myeloma in the bone marrow, could it actually be light chain escape, or can that happen without any myeloma in the bone marrow and just be a light chain sub clone? Does myeloma ALWAYS have to show up in the bone marrow?
Yes, at diagnosis my M spike was 1.5 IgA lambda, 90% bone marrow burden. This bone marrow biopsy sample was adequate to do lots of testing, but my doctor suggested that perhaps it was a false negative.
As of Wednesday, he hadn't heard from the specialist. I just put a call in to them, but not sure I can prompt the doctors to talk with one another.
The question I have I guess is, if there's no myeloma in the bone marrow, could it actually be light chain escape, or can that happen without any myeloma in the bone marrow and just be a light chain sub clone? Does myeloma ALWAYS have to show up in the bone marrow?
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
Re: Free light chain escape: am I experiencing it?
Hi Carol,
I can't answer your question definitively. But from what I understand about multiple myeloma, I just can't imagine a scenario where one could have a completely normal bone marrow biopsy with a serum lambda free light chain level of 644 mg/L and a free light chain ratio > 300. I would instead lean more towards the false negative or non-representative bone-marrow-sample scenarios.
But this is only speculation from a layman, and your myeloma specialist should really weigh in on this.
I can't answer your question definitively. But from what I understand about multiple myeloma, I just can't imagine a scenario where one could have a completely normal bone marrow biopsy with a serum lambda free light chain level of 644 mg/L and a free light chain ratio > 300. I would instead lean more towards the false negative or non-representative bone-marrow-sample scenarios.
But this is only speculation from a layman, and your myeloma specialist should really weigh in on this.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Free light chain escape: am I experiencing it?
After a prolonged wait and cancelled treatments, I finally heard today from my hematologist that I will resume treatment. He and the specialist had a difficult time connecting, but once they did he advised that since my biopsy was negative, if my light chains stabilized, it was ok to withhold treatment. Unfortunately, my lambda is now 967 mg/L and kappa is 1 mg/L. Platelets are 72 x 1000/mcl.
Now that it appears I am back on track, I resume Kyprolis / dex. Hope it's effective. I don't see my hematologist until August 4th, at which time I will discuss all of this at length.
Now that it appears I am back on track, I resume Kyprolis / dex. Hope it's effective. I don't see my hematologist until August 4th, at which time I will discuss all of this at length.
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
Re: Free light chain escape: am I experiencing it?
Thanks for the follow up Carol. So, did they say that your bone marrow biopsy must not have caught a "disease pocket" and was therefore a false negative? Hoping that the treatment works well for you. I'll be real curious to see how your numbers fare after a few cycles.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Free light chain escape: am I experiencing it?
Multibilly -
Finally met with my oncologist and also received a copy of the report from the myeloma specialist. Interestingly, the specialists' notes indicated that he didn't think Kyprolis would be effective, although at the actual visit, that was option #2 for him.
I have been on Kyprolis on and off since June, just beginning my full second cycle, which includes an increased dosage. Unfortunately, it so far is not proving to be effective. My lambda light chains are now 972mg/L - Kappa <1mg/L. After next free light chain test next week, we'll discuss changing treatment.
I believe the next treatment to try will be thalidomide based on specialists suggestion. It was initially rejected by me because my doctor was going to include huge doses of dex with it which I knew would not be a lifestyle tolerant thing. He now says dex is the most negotiable thing, so we'll talk about that.
Meanwhile current other tests as follows:
HGB 10.6 g/dl
platelets 91 x1000/mcl - a slight increase and slightly promising
RBC 3.06 mill/mcl- steadily decreasing with Kyprolis
WBC 3.7 x1000/mcl - was recently running in the mid 4's
IGA 16 mg/dl
IGG 385 mg/dl
IGM <17 mg/dl
The specialist indicated that thalidomide was less harsh on the bone marrow, which obviously I am fighting bone marrow suppression and risk bone marrow failure.
A second transplant is also on the table and I would consider it since my drug options are somewhat limited by my previous poor reactions to Revlimid (neutropenia).
Finally met with my oncologist and also received a copy of the report from the myeloma specialist. Interestingly, the specialists' notes indicated that he didn't think Kyprolis would be effective, although at the actual visit, that was option #2 for him.
I have been on Kyprolis on and off since June, just beginning my full second cycle, which includes an increased dosage. Unfortunately, it so far is not proving to be effective. My lambda light chains are now 972mg/L - Kappa <1mg/L. After next free light chain test next week, we'll discuss changing treatment.
I believe the next treatment to try will be thalidomide based on specialists suggestion. It was initially rejected by me because my doctor was going to include huge doses of dex with it which I knew would not be a lifestyle tolerant thing. He now says dex is the most negotiable thing, so we'll talk about that.
Meanwhile current other tests as follows:
HGB 10.6 g/dl
platelets 91 x1000/mcl - a slight increase and slightly promising
RBC 3.06 mill/mcl- steadily decreasing with Kyprolis
WBC 3.7 x1000/mcl - was recently running in the mid 4's
IGA 16 mg/dl
IGG 385 mg/dl
IGM <17 mg/dl
The specialist indicated that thalidomide was less harsh on the bone marrow, which obviously I am fighting bone marrow suppression and risk bone marrow failure.
A second transplant is also on the table and I would consider it since my drug options are somewhat limited by my previous poor reactions to Revlimid (neutropenia).
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
Re: Free light chain escape: am I experiencing it?
So here's an update:
My most recent kappa lambda levels, done August 11, are kappa <1 and lambda 1500 mg/L. Not good. More disturbing is my shoulder/scapula pain which was recently was MRI'd.
Findings: Diffuse heterogeneous nonspecific bone marrow signal and enhancement foci are seen throughout the shoulder region – especially proximal humerus and scattered areas of scapula. Nonspecific heterogeneous soft tissue lesion is seen in the right medial upper abutting the right costovertebral junction. Soft tissue component measures 3.1 x 1.7 cm axial. Adjacent right posterior lung apex pleural nodular thickening noted.
Kind of freaking me out! CT scan is scheduled tomorrow and I have a radiology/oncology consult scheduled for Monday afternoon.
By the way, I had a PET/CT in April that showed no signs of this. Aggressive?
My next new treatment begins on Monday. VDT - with pretty huge amounts of dexamethasone. Not looking forward to it, but willing to give it a shot for the sake of my life! Thalidomide was the specialist's number one option since my bone marrow is already significantly compromised.
Any comments on the MRI? It's getting increasingly difficult to stay positive:-)
My most recent kappa lambda levels, done August 11, are kappa <1 and lambda 1500 mg/L. Not good. More disturbing is my shoulder/scapula pain which was recently was MRI'd.
Findings: Diffuse heterogeneous nonspecific bone marrow signal and enhancement foci are seen throughout the shoulder region – especially proximal humerus and scattered areas of scapula. Nonspecific heterogeneous soft tissue lesion is seen in the right medial upper abutting the right costovertebral junction. Soft tissue component measures 3.1 x 1.7 cm axial. Adjacent right posterior lung apex pleural nodular thickening noted.
Kind of freaking me out! CT scan is scheduled tomorrow and I have a radiology/oncology consult scheduled for Monday afternoon.
By the way, I had a PET/CT in April that showed no signs of this. Aggressive?
My next new treatment begins on Monday. VDT - with pretty huge amounts of dexamethasone. Not looking forward to it, but willing to give it a shot for the sake of my life! Thalidomide was the specialist's number one option since my bone marrow is already significantly compromised.
Any comments on the MRI? It's getting increasingly difficult to stay positive:-)
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
Re: Free light chain escape: am I experiencing it?
Here's my latest update.
Unfortunately, I have recently been diagnosed with extramedullary disease. I have tumors up and down my spine. I only had a thoracic CT and a head CT, so I don't know if there are further tumors. I am currently on Velcade, thalidomide, and dexamethasone (VTD). Tolerating it well, but my blood counts are dropping.
I think my next line of treatment will be Darzalex, but my options are running thin. I need a miracle.
Unfortunately, I have recently been diagnosed with extramedullary disease. I have tumors up and down my spine. I only had a thoracic CT and a head CT, so I don't know if there are further tumors. I am currently on Velcade, thalidomide, and dexamethasone (VTD). Tolerating it well, but my blood counts are dropping.
I think my next line of treatment will be Darzalex, but my options are running thin. I need a miracle.
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
Re: Free light chain escape: am I experiencing it?
Hi Carol,
I'm sorry to hear about the extramedullary disease that's been found on your spine. Thanks for giving us all an update.
I see from your earlier posts that you were treated with Kyprolis prior to your current VTD therapy, and that you also had a stem cell transplant. How did you respond to the transplant, and what was your initial induction therapy? Was it RVD?
Also, are your doctors staying away from Revlimid, and perhaps Pomalyst, because of how those treatments suppress your blood counts?
It just seems that there should be more options than just Darzalex at this point.
Good luck!
I'm sorry to hear about the extramedullary disease that's been found on your spine. Thanks for giving us all an update.
I see from your earlier posts that you were treated with Kyprolis prior to your current VTD therapy, and that you also had a stem cell transplant. How did you respond to the transplant, and what was your initial induction therapy? Was it RVD?
Also, are your doctors staying away from Revlimid, and perhaps Pomalyst, because of how those treatments suppress your blood counts?
It just seems that there should be more options than just Darzalex at this point.
Good luck!
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JimNY
19 posts
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