Hi mmjakarta,
Sorry to hear about your Mom's multiple myeloma diagnosis.
I am also from Jakarta. My Dad was diagnosed with multiple myeloma 4 years ago, though the first compression fracture happened in 2010. The second compression fracture in 2011 led us to his diagnosis. High-risk, p53d, unfortunately. His is also kappa free light chain multiple myeloma.
Four years ago, Velcade was uncommon. We had treatments in Singapore.
Doctors in Jakarta are not familiar with multiple myeloma (at least then). I suggest you to go to Singapore for an overall treatment plan and/or diagnosis – just the initial consultation and see if it agrees with your current diagnosis and/or treatment plan.
But do read a lot. This forum helps. You may get more knowledge here than from your doctor.
Subcutaneous injection is better than infusion. It is also faster. Be careful with fake Velcade; it's not completely fake, but an illegal generic bortezomib from India that circulates in Jakarta. Be cautious especially if you're getting it from "Jansen Cillig representatives." Question your doctor all the time (FYI - patent for Velcade does not expire until next year, I believe.)
In Singapore it's about 1000 SGD per 1 g of Velcade. Check her weight, and estimate her body area to get the correct dosage of Velcade. Dad is about 65 kg 170 cm and he needed only 1.3 g.
Any questions are welcomed. But be calm, you're in the right place for knowledge and support for multiple myeloma.
Tpt
Forums
Re: Mother with multiple myeloma in Jakarta
Hi Multibilly, Terry, and tpt. Thanks for your input.
Yesterday went to different oncologist. He suggested for bone marrow biopsy and cytogenetic, we will do tomorrow morning. We actually did biopsy during mom massive spine stabilization surgery in August, but was not bone marrow and the result was showing spinal anaplastic astrocytoma, which was confusing.
Her blood test, calcium, kidney, etc, are normal.
However, on top of PET scan, MRI, CT scan result, her free light chain test confirm multiple myeloma attacking her spine only. I don't see any M spike on her SPEP test result either, but slightly higher number on a-1 and a-2 globulin and slightly lower on albumin.
She got dexamethasone for 5 days and we test 2nd free light chain test. The number down from
Kappa 1,528 to 1,200
Lambda 23.87 to 19,00
Ratio kappa / lambda 64.01 to 65 (higher)
It seems she respond to dexamethasone (correct me if I am wrong?). The second doctor suggest Velcade (subcutaneous), Revlimid, and dexamethasone (twice a week) + Zometa (once a month) for 6 months cycle. I have not agree on anything as those combination way too much.
What bone marrow biopsy will tell us plasma cell percentage? What number I should pay attention, which consider normal, etc? I did some google and read previous post but still confused.
Will decide what treatment for mom after bone marrow biopsy result this weekend. Currently to maintain she is on prednisone.
Many Thanks
Yesterday went to different oncologist. He suggested for bone marrow biopsy and cytogenetic, we will do tomorrow morning. We actually did biopsy during mom massive spine stabilization surgery in August, but was not bone marrow and the result was showing spinal anaplastic astrocytoma, which was confusing.
Her blood test, calcium, kidney, etc, are normal.
However, on top of PET scan, MRI, CT scan result, her free light chain test confirm multiple myeloma attacking her spine only. I don't see any M spike on her SPEP test result either, but slightly higher number on a-1 and a-2 globulin and slightly lower on albumin.
She got dexamethasone for 5 days and we test 2nd free light chain test. The number down from
Kappa 1,528 to 1,200
Lambda 23.87 to 19,00
Ratio kappa / lambda 64.01 to 65 (higher)
It seems she respond to dexamethasone (correct me if I am wrong?). The second doctor suggest Velcade (subcutaneous), Revlimid, and dexamethasone (twice a week) + Zometa (once a month) for 6 months cycle. I have not agree on anything as those combination way too much.
What bone marrow biopsy will tell us plasma cell percentage? What number I should pay attention, which consider normal, etc? I did some google and read previous post but still confused.
Will decide what treatment for mom after bone marrow biopsy result this weekend. Currently to maintain she is on prednisone.
Many Thanks
-
mmjakarta - Name: MMJakarta
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 58
Re: Mother with multiple myeloma in Jakarta
Hi Mmjakarta,
That's good news she is getting a bone marrow biopsy (BMB) so that you can figure out if this really is multiple myeloma or something else given the confusing spinal biopsy report.
When the doctor ran the SPEP test, he probably also ran what is known as a serum immunofixation (IFE) test. Did you have the results of the serum immunofixation test? That might give you another clue as to what's going on here. Also, did they run any quantified immunoglobulin tests to measure the IgG, IgA and IgM levels?
The bone marrow plasma percentage (BMPC) is probably the most important thing that you will get back on the BMB report. A normal BMPC is less than 5%. Your mom's BMPC will likely be higher if she has multiple myeloma. The report should also tell you if her plasma cells visually appear to be distorted by multiple myeloma and whether she has some of the typical multiple myeloma protein markers on her cell's surfaces via a test called flow cytometry.
The cytogenetic report will only be as good as the probes for which the FISH test is configured for. You can get a good idea of which FISH probes to ask for and which cytogenetic abnormalities are the most concerning by reading through this article:
"Great article - cytogenetics (chromosomal abnormalities)" (forum disc. started Nov 3, 2015)
This Mayo guideline (link) is easier to read and understand and it will also give you a good idea of the major cytogenetic abnormalities to be concerned with.
Lastly, it's really very hard for a non-medical person to figure out just what the BMB results mean when you read through it, even when you know which specific chromosomal abnormalities or protein markers you are trying to find in the report. So be sure to walk through the report with your doctor and have him explain each of the sections of the report and take lots of notes.
Good luck with all this.
That's good news she is getting a bone marrow biopsy (BMB) so that you can figure out if this really is multiple myeloma or something else given the confusing spinal biopsy report.
When the doctor ran the SPEP test, he probably also ran what is known as a serum immunofixation (IFE) test. Did you have the results of the serum immunofixation test? That might give you another clue as to what's going on here. Also, did they run any quantified immunoglobulin tests to measure the IgG, IgA and IgM levels?
The bone marrow plasma percentage (BMPC) is probably the most important thing that you will get back on the BMB report. A normal BMPC is less than 5%. Your mom's BMPC will likely be higher if she has multiple myeloma. The report should also tell you if her plasma cells visually appear to be distorted by multiple myeloma and whether she has some of the typical multiple myeloma protein markers on her cell's surfaces via a test called flow cytometry.
The cytogenetic report will only be as good as the probes for which the FISH test is configured for. You can get a good idea of which FISH probes to ask for and which cytogenetic abnormalities are the most concerning by reading through this article:
"Great article - cytogenetics (chromosomal abnormalities)" (forum disc. started Nov 3, 2015)
This Mayo guideline (link) is easier to read and understand and it will also give you a good idea of the major cytogenetic abnormalities to be concerned with.
Lastly, it's really very hard for a non-medical person to figure out just what the BMB results mean when you read through it, even when you know which specific chromosomal abnormalities or protein markers you are trying to find in the report. So be sure to walk through the report with your doctor and have him explain each of the sections of the report and take lots of notes.
Good luck with all this.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Mother with multiple myeloma in Jakarta
Hi Multibilly,
Thanks for your reply,
Mom's serum immunofixation says "appear gamopati monoclonal kappa light chain", but without any number, just some blue colors box that I have no idea how to read.
Unfortunately, nobody suggest quantified immunoglobulin test yet, but I have read here and other sources it seems important number to monitor too in addition to serum free light chain?
I wonder which lab test is very important to monitor progress?
I read on Velcade website it seems the most important lab test to monitor are:
1. Complete blood count
2. Chemistry profile (glucose, urea, creatinine, protein total, calcium, b2 microglobulin)
3. SPEP
4. Serum quantitative immunoglobulin
5. Serum free light chain
6. Urine (creatinine, 24-hour total protein, urine immunofixation
Do I miss anything?
Thanks for your reply,
Mom's serum immunofixation says "appear gamopati monoclonal kappa light chain", but without any number, just some blue colors box that I have no idea how to read.
Unfortunately, nobody suggest quantified immunoglobulin test yet, but I have read here and other sources it seems important number to monitor too in addition to serum free light chain?
I wonder which lab test is very important to monitor progress?
I read on Velcade website it seems the most important lab test to monitor are:
1. Complete blood count
2. Chemistry profile (glucose, urea, creatinine, protein total, calcium, b2 microglobulin)
3. SPEP
4. Serum quantitative immunoglobulin
5. Serum free light chain
6. Urine (creatinine, 24-hour total protein, urine immunofixation
Do I miss anything?
-
mmjakarta - Name: MMJakarta
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 58
Re: Mother with multiple myeloma in Jakarta
I have read a paper and some files about monoclonal gammopathies and start thinking my mother might have MGUS instead. Because other than serum light chain test and SPEP that says monoclona gammopathies kappa light chain, all her blood test shows within normal range result.
Her spine bone biopsy says its "anaplastic astrocytoma (brain tumor)" which does not make sense at all because its on the spine and she has no headache or any symptoms.
I hope bone marrow biopsy can guide best also tell her cancer stage.
Her spine bone biopsy says its "anaplastic astrocytoma (brain tumor)" which does not make sense at all because its on the spine and she has no headache or any symptoms.
I hope bone marrow biopsy can guide best also tell her cancer stage.
-
mmjakarta - Name: MMJakarta
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 58
Re: Mother with multiple myeloma in Jakarta
Mmjakarta,
A few things:
1. The tests you listed above are the right ones to get.
2. It could very well be that your mom has a light chain monoclonal gammopathy, where only the monoclonal free light chains (in her case, kappa free light chains) are being secreted from the bone marrow into the blood. With light chain monoclonal gammopathies, no monoclonal immunoglobulin (heavy chains such as IgG, IgA or IgM) are secreted into the blood and therefore there would be no M-spike and none of the immunoglobulins would be elevated. But the only way you could tell if this was the case would be to run an SPEP (your doctor should confirm if no M-spike was found on her last SPEP) and a quantified immunoglobulin test.
3. If it is a light chain monoclonal gammopathy, the BMPC from the bone marrow biopsy will be key in determining whether she might have light chain MGUS or light chain smoldering multiple myeloma.
4. The big question is whether her earlier spinal problems were due to multiple myeloma or to something else (I have no idea if spinal astrocytomas can lead to spinal fractures as I am not a doctor). If the fractures were due to multiple myeloma, then she would be classified as having symptomatic multiple myeloma. If not, then you may be right that she could have light chain MGUS or light chain smoldering multiple myeloma (to be confirmed by a bone marrow biopsy).
Note that if you look up anaplastic astrocytoma, you will quickly find that tumors associated with this condition can appear in the spine:
https://rarediseases.org/rare-diseases/anaplastic-astrocytoma/
"....Other common sites for anaplastic astrocytomas include the part of the brain that contains the thalamus and hypothalamus (diencephalon), the lower area of brain near the back of the neck that controls movement and balance (cerebellum), and the spinal cord. Tumors in the diencephalon region may cause headaches, fatigue, weakness of the arms and legs, vision problems, and hormonal imbalances. Tumors in the cerebellum may cause headaches, changes in personality or behavior, and balance problems. Tumors of spinal cord may cause back pain, sensory abnormalities such as tingling or burning sensations (paresthesias), weakness, and gait disturbances."
If it is determined that she has light chain smoldering multiple myeloma and she meets none of the CRAB criteria, then the most recent IMWG guidelines would call for not considering treatment until her FLC ratio reached 100 and her kappa FLC was at least 100 mg/L (and then, it is still only a recommendation that treatment be "considered" based on the judgment of the specialist looking at her overall situation). See:
https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/
Again, I'm not a doc, so please confirm all this with your doc. It sounds like from the earlier post that you may want to consider seeing a specialist in Singapore to confirm all this once you have the BMB and all of the other lab results in hand.
A few things:
1. The tests you listed above are the right ones to get.
2. It could very well be that your mom has a light chain monoclonal gammopathy, where only the monoclonal free light chains (in her case, kappa free light chains) are being secreted from the bone marrow into the blood. With light chain monoclonal gammopathies, no monoclonal immunoglobulin (heavy chains such as IgG, IgA or IgM) are secreted into the blood and therefore there would be no M-spike and none of the immunoglobulins would be elevated. But the only way you could tell if this was the case would be to run an SPEP (your doctor should confirm if no M-spike was found on her last SPEP) and a quantified immunoglobulin test.
3. If it is a light chain monoclonal gammopathy, the BMPC from the bone marrow biopsy will be key in determining whether she might have light chain MGUS or light chain smoldering multiple myeloma.
4. The big question is whether her earlier spinal problems were due to multiple myeloma or to something else (I have no idea if spinal astrocytomas can lead to spinal fractures as I am not a doctor). If the fractures were due to multiple myeloma, then she would be classified as having symptomatic multiple myeloma. If not, then you may be right that she could have light chain MGUS or light chain smoldering multiple myeloma (to be confirmed by a bone marrow biopsy).
Note that if you look up anaplastic astrocytoma, you will quickly find that tumors associated with this condition can appear in the spine:
https://rarediseases.org/rare-diseases/anaplastic-astrocytoma/
"....Other common sites for anaplastic astrocytomas include the part of the brain that contains the thalamus and hypothalamus (diencephalon), the lower area of brain near the back of the neck that controls movement and balance (cerebellum), and the spinal cord. Tumors in the diencephalon region may cause headaches, fatigue, weakness of the arms and legs, vision problems, and hormonal imbalances. Tumors in the cerebellum may cause headaches, changes in personality or behavior, and balance problems. Tumors of spinal cord may cause back pain, sensory abnormalities such as tingling or burning sensations (paresthesias), weakness, and gait disturbances."
If it is determined that she has light chain smoldering multiple myeloma and she meets none of the CRAB criteria, then the most recent IMWG guidelines would call for not considering treatment until her FLC ratio reached 100 and her kappa FLC was at least 100 mg/L (and then, it is still only a recommendation that treatment be "considered" based on the judgment of the specialist looking at her overall situation). See:
https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/
Again, I'm not a doc, so please confirm all this with your doc. It sounds like from the earlier post that you may want to consider seeing a specialist in Singapore to confirm all this once you have the BMB and all of the other lab results in hand.
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Mother with multiple myeloma in Jakarta
Thanks again Multibilly,
1. Her first SPEP did not show any M-spike graph. We voluntary asked hospital lab to do another SPEP and serum free light chain test (to monitor progress or no progress).
2. Her spinal fractures indeed confusing. PET CT-scan shows no metastasis, only on spine. The spine biopsy result even more confusing.
3. Unfortunately we did not run quantified immunoglobulin tests to measure the IgG, IgA and IgM levels. We will do on our next visit on Monday. It takes them one week to get result from this kind of test. So long.
Will wait for bone marrow biopsy result in 2 days.
Oh well, seems the two doctors we consult only interest is to get her to quick aggressive treatment – Velcade, etc. Seems we will need third doctor, or a more experienced doctor overseas who can tell the different between:
1. Spinal Solitary Plasmacytoma
2. MGUS
3. Multiple myeloma and staging
and suggest / redo all the lab test. Oh well.
Not sure mom will like another PET-CT scan. She is so anxious being in tube had enough MRI test before surgery.
Thanks again though
1. Her first SPEP did not show any M-spike graph. We voluntary asked hospital lab to do another SPEP and serum free light chain test (to monitor progress or no progress).
2. Her spinal fractures indeed confusing. PET CT-scan shows no metastasis, only on spine. The spine biopsy result even more confusing.
3. Unfortunately we did not run quantified immunoglobulin tests to measure the IgG, IgA and IgM levels. We will do on our next visit on Monday. It takes them one week to get result from this kind of test. So long.
Will wait for bone marrow biopsy result in 2 days.
Oh well, seems the two doctors we consult only interest is to get her to quick aggressive treatment – Velcade, etc. Seems we will need third doctor, or a more experienced doctor overseas who can tell the different between:
1. Spinal Solitary Plasmacytoma
2. MGUS
3. Multiple myeloma and staging
and suggest / redo all the lab test. Oh well.
Not sure mom will like another PET-CT scan. She is so anxious being in tube had enough MRI test before surgery.
Thanks again though
-
mmjakarta - Name: MMJakarta
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: August 2015
- Age at diagnosis: 58
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