Hi Lu,
OK, now I understand why your current doctor is talking about starting treatment.
1293.7 mg/L is quite a high serum kappa free light chain value and a ratio of 219.27 is also quite high. You do indeed meet the new IMWG requirement you referenced:
"Serum involved / uninvolved free light chain ratio of 100 or greater (your ratio is 219.27), provided the absolute level of the involved free chain is at least 100 mg/L (yours is 1293.7 mg/L). "
It's great you aren't experiencing any CRAB symptoms and that you went in and got tested before you developed any CRAB symptoms. Again, you are in extremely capable hands with Dr. McCarthy.
Take care.
Forums
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly diagnosed with smoldering myeloma
Hello Lu,
Wow! Your kappa free light chains (FLCs), the main marker both of us have, is very similar to what mine was (1,073 +/-) before my treatment began. I was equally concerned about the kidney damage or the excess protein causing any amyloidosis. I am glad that you, too, would get that spilling protein down in a few weeks.
My HMO's pharmacy gave me a 100 day supply of aspirin, acyclovir and other nausea medicine that I have not needed. Revlimid is a strictly regulated and expensive drug and that is sent to me from a central chemo pharmacy by FedEx, personal signature required. I have read in some other discussion here (and confirmed with our pharmacist who calls me to check all is OK before releasing the next 3-week supply) that each pill costs almost $500.00!
The sub-Q Velcade shot is given only at the cancer / chemo clinic. It seems that the chemo pharmacy gets the syringe with the Velcade ready only after the chemo nurse seats me in the patient's chair and calls them. They also make sure that my CBC and other blood tests are close to 'normal' before giving me the Velcade shot. These tests are repeated a day or two before the Velcade shot. This Velcade must be quite expensive, too. I believe it was developed recently and approved by the FDA only a few years ago.
My urine protein came down to a 'normal' level only after the first 4 weeks of treatment. Therefore, we can only thank all the latest R&D for a very effective treatment. Though I am getting quite tired of this routine after 10 1/2 weeks, knowing I should be able to go on maintenance soon and resume my usual active life.
By the way, have you had the results of your cytogenetics test, of your bone marrow biopsy? It may take another week or two and that, along with all your other test results, can give you a good idea as to where your myeloma fits in the Mayo Clinic's mSMART guide. With the high kappa number, I assume you would have the "standard" risk IgG kappa type multiple myeloma and you would respond quite well.
Wish you all the best!
K_Shash
Wow! Your kappa free light chains (FLCs), the main marker both of us have, is very similar to what mine was (1,073 +/-) before my treatment began. I was equally concerned about the kidney damage or the excess protein causing any amyloidosis. I am glad that you, too, would get that spilling protein down in a few weeks.
My HMO's pharmacy gave me a 100 day supply of aspirin, acyclovir and other nausea medicine that I have not needed. Revlimid is a strictly regulated and expensive drug and that is sent to me from a central chemo pharmacy by FedEx, personal signature required. I have read in some other discussion here (and confirmed with our pharmacist who calls me to check all is OK before releasing the next 3-week supply) that each pill costs almost $500.00!
The sub-Q Velcade shot is given only at the cancer / chemo clinic. It seems that the chemo pharmacy gets the syringe with the Velcade ready only after the chemo nurse seats me in the patient's chair and calls them. They also make sure that my CBC and other blood tests are close to 'normal' before giving me the Velcade shot. These tests are repeated a day or two before the Velcade shot. This Velcade must be quite expensive, too. I believe it was developed recently and approved by the FDA only a few years ago.
My urine protein came down to a 'normal' level only after the first 4 weeks of treatment. Therefore, we can only thank all the latest R&D for a very effective treatment. Though I am getting quite tired of this routine after 10 1/2 weeks, knowing I should be able to go on maintenance soon and resume my usual active life.
By the way, have you had the results of your cytogenetics test, of your bone marrow biopsy? It may take another week or two and that, along with all your other test results, can give you a good idea as to where your myeloma fits in the Mayo Clinic's mSMART guide. With the high kappa number, I assume you would have the "standard" risk IgG kappa type multiple myeloma and you would respond quite well.
Wish you all the best!
K_Shash
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K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Newly diagnosed with smoldering myeloma
Thank you Multibilly and K_Sash,
Very helpful information from both of you.
Multibilly, I now know what numbers were being referenced. I'm surprised I don't have CRAB symptoms but very happy I dont. I wish I didn't have to wait another week for my appointment with Dr McCarthy. As I understand, I am lucky to get in that fast.
K_Sash, I do have my cytogenetics/FISH results. It reveals a normal female karyotype without apparent clinal aberrations. Intelligent FISH for myeloma: positive for IGH@rearrangement. Myeloma FISH abnormal results with -13 and t(11;14). I don't know what positive for IGH@arrangement means. Do either of you know what the FISH results mean?
My flow cytometry shows bone marrow with a clonal population of kappa light-chain restricted plasma cells (2.2%)
Once again, thanks so much for your support!
Lu
Very helpful information from both of you.
Multibilly, I now know what numbers were being referenced. I'm surprised I don't have CRAB symptoms but very happy I dont. I wish I didn't have to wait another week for my appointment with Dr McCarthy. As I understand, I am lucky to get in that fast.
K_Sash, I do have my cytogenetics/FISH results. It reveals a normal female karyotype without apparent clinal aberrations. Intelligent FISH for myeloma: positive for IGH@rearrangement. Myeloma FISH abnormal results with -13 and t(11;14). I don't know what positive for IGH@arrangement means. Do either of you know what the FISH results mean?
My flow cytometry shows bone marrow with a clonal population of kappa light-chain restricted plasma cells (2.2%)
Once again, thanks so much for your support!
Lu
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North-East - Name: Lu
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb 10, 2015
- Age at diagnosis: 59
Re: Newly diagnosed with smoldering myeloma
Hi Ian,
I tried sending you a note earlier but ended up having trouble with my user name so it didn't go through.
I am so pleased my hematologist / oncologist, Dr. Khadim, referred me on to Dr. McCarthy. I realize I need to have an expert in myeloma treatment so I'm on my way. I am anxious to get started now that I know where I stand.
Thank you for your encouragement, Ian. My best to you on your journey!
Lu
I tried sending you a note earlier but ended up having trouble with my user name so it didn't go through.
I am so pleased my hematologist / oncologist, Dr. Khadim, referred me on to Dr. McCarthy. I realize I need to have an expert in myeloma treatment so I'm on my way. I am anxious to get started now that I know where I stand.
Thank you for your encouragement, Ian. My best to you on your journey!
Lu
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North-East - Name: Lu
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb 10, 2015
- Age at diagnosis: 59
Re: Newly diagnosed with smoldering myeloma
Hi Lu,
I'm always a bit reluctant to comment on genetic study results because I'm no expert in these matters. But here's my take as a layman:
t(11;14) is a genetic translocation (swapping) and is considered to be standard risk.
-13 (also known as "deletion 13" or "del 13") is considered to be an intermediate risk factor IF it is confirmed by metaphase cytogenetics (which is not the same as FISH).
"Positive for an IGH rearrangement" means that one or more swaps or reordering of genetic material have occurred in a specific region of your chromosome #14. There are a number of different abnormalities that can account for this rearrangement finding.
Again, I'm no expert on these matters, so please confirm all this with your doc.
To get a better idea of what these might mean, see:
http://www.msmart.org/newly%20diagnosed%20myeloma.pdf
I'm always a bit reluctant to comment on genetic study results because I'm no expert in these matters. But here's my take as a layman:
t(11;14) is a genetic translocation (swapping) and is considered to be standard risk.
-13 (also known as "deletion 13" or "del 13") is considered to be an intermediate risk factor IF it is confirmed by metaphase cytogenetics (which is not the same as FISH).
"Positive for an IGH rearrangement" means that one or more swaps or reordering of genetic material have occurred in a specific region of your chromosome #14. There are a number of different abnormalities that can account for this rearrangement finding.
Again, I'm no expert on these matters, so please confirm all this with your doc.
To get a better idea of what these might mean, see:
http://www.msmart.org/newly%20diagnosed%20myeloma.pdf
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Newly diagnosed with smoldering myeloma
Hi Lu,
I think Multibilly's reply on your cytogenetics is excellent. I just want to add that the (11:14) translocation (which as Multibilly states is "standard risk" - whereas many other types of translocations are higher risk) is probably what they are referring to as an IGH translocation. The "IGH translocation" is probably not a separate abnormality, so don't worry about that, but for sure ask Dr. McCarthy. It is extremely rare for a person to have more than one translocation (I think about 2% of people with translocations), so it's not likely that the "rearrangement" could refer to another (undefined) translocation.
"IGH" is the locus (spot) on chromosome 14 where, in myeloma, the chromosome splits and reconnects with another chromosome to create a translocation, in your case re-connecting with a split chromosome 11. A translocation is a type of rearrangement.
I think Multibilly's reply on your cytogenetics is excellent. I just want to add that the (11:14) translocation (which as Multibilly states is "standard risk" - whereas many other types of translocations are higher risk) is probably what they are referring to as an IGH translocation. The "IGH translocation" is probably not a separate abnormality, so don't worry about that, but for sure ask Dr. McCarthy. It is extremely rare for a person to have more than one translocation (I think about 2% of people with translocations), so it's not likely that the "rearrangement" could refer to another (undefined) translocation.
"IGH" is the locus (spot) on chromosome 14 where, in myeloma, the chromosome splits and reconnects with another chromosome to create a translocation, in your case re-connecting with a split chromosome 11. A translocation is a type of rearrangement.
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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
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