Thanks all,
I asked my dad today, he said he had the 24-hour test last about 2 months ago by request of the hematologist at the local cancer centre; Tuesday's blood test (electro was done on some of the samples) showed no kidney issues and no other areas of real concern, except the kappa / lambda ratio being 2.5 and some free light chain findings; M-spike was not mentioned.
We are "lucky" in that we have three hospitals within an 1 hour 15 minute drive which are designated by the province to do stem cell transplants; so if it is decided with certainty that the transplant with be prescribed, I will be easy to visit him after work, possibly almost daily. (I understand one has to live at the hospital during a transplant for 2-3 weeks, correct?)
I am confused, can one also have a M-spike and FLC findings, or is it one or the other?
Nancy, how were your Velcade/dex side effects? What about neuropathy in the legs? How did you do on cyclophosphamide during your pre-stem cell transplant?
Forums
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: My story
Hi Little Monkey,
To be clear, the serum test that gives your all the free light chain (FLC) values is what is known as a serum free light chain assay, and is not to be confused with the serum electrophoresis test (SPEP), which is a completely separate test that measures the M-spike (the M-spike may be called abnormal band, paraprotein, M-protein, etc, in the SPEP report).
Also be clear that the M-spike might also be called out in a separate notation on the SPEP report and may not be included in an online summary of the SPEP report.
Depending on where one might be in treatment and/or the type of multiple myeloma one might have, you can have just about any combination of an M-spike (including no M-spike) and any combination of the lambda and kappa FLC (ranging from low to normal to high for both the kappa and the lambda FLCs). The most common form of multiple myeloma presents with an M-spike and one of the lambda or kappa FLCs being elevated, while the other FLC is in the normal range.
To be clear, the serum test that gives your all the free light chain (FLC) values is what is known as a serum free light chain assay, and is not to be confused with the serum electrophoresis test (SPEP), which is a completely separate test that measures the M-spike (the M-spike may be called abnormal band, paraprotein, M-protein, etc, in the SPEP report).
Also be clear that the M-spike might also be called out in a separate notation on the SPEP report and may not be included in an online summary of the SPEP report.
Depending on where one might be in treatment and/or the type of multiple myeloma one might have, you can have just about any combination of an M-spike (including no M-spike) and any combination of the lambda and kappa FLC (ranging from low to normal to high for both the kappa and the lambda FLCs). The most common form of multiple myeloma presents with an M-spike and one of the lambda or kappa FLCs being elevated, while the other FLC is in the normal range.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: My story
Hi Little Monkey,
I think that Multibilly has given you a thorough reply to your questions about sFLC and the monoclonal (M) proteins as determined from serum electrophoresis tests. They are two different tests, that in my case, are tracking my myeloma.
I only had four cycles of Velcade / dex. I got some neuropathy in my feet, which was permanent. I was lucky it was not worse. I also had sleep deprivation from the dex, so since I am now taking dex again, I use a sleeping pill two days a week so as to get a better sleep. That side effect certainly seems to vary from patient to patient, but I would be cautious and make sure that he gets enough rest.
I didn't really like losing my hair because of taking cyclophosphamide, but I think that for CyBorD, it wouldn't be such a strong dose as for stem cell harvest. That is something I have wondered about, and maybe someone would know the answer to that.
My stem cell transplant was done as an outpatient, and I only spent about 3 nights in the hospital, but I had a lot of support at home and so that was feasible.
Hope that helps!
I think that Multibilly has given you a thorough reply to your questions about sFLC and the monoclonal (M) proteins as determined from serum electrophoresis tests. They are two different tests, that in my case, are tracking my myeloma.
I only had four cycles of Velcade / dex. I got some neuropathy in my feet, which was permanent. I was lucky it was not worse. I also had sleep deprivation from the dex, so since I am now taking dex again, I use a sleeping pill two days a week so as to get a better sleep. That side effect certainly seems to vary from patient to patient, but I would be cautious and make sure that he gets enough rest.
I didn't really like losing my hair because of taking cyclophosphamide, but I think that for CyBorD, it wouldn't be such a strong dose as for stem cell harvest. That is something I have wondered about, and maybe someone would know the answer to that.
My stem cell transplant was done as an outpatient, and I only spent about 3 nights in the hospital, but I had a lot of support at home and so that was feasible.
Hope that helps!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: My story
Thanks for all the clarifications.
I am concerned about the neuropathy pain side effects of CyBorD, as my father already has numbness and neuropathic pain in his legs due to the damage from the SBP.
As for doing the possible stem cell transplant outpatient, we are just a little outside the 75 km limit of each of the three hospitals, which would allow an outpatient stem cell transplant; maybe they would make an allowance for a dozen km outside the zone.
I am concerned about the neuropathy pain side effects of CyBorD, as my father already has numbness and neuropathic pain in his legs due to the damage from the SBP.
As for doing the possible stem cell transplant outpatient, we are just a little outside the 75 km limit of each of the three hospitals, which would allow an outpatient stem cell transplant; maybe they would make an allowance for a dozen km outside the zone.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: My story
Hi Again Little Monkey,
I should have mentioned yesterday that with Velcade, there is now approved for quite a few years, a subcutaneous version of it that does not cause as much neuropathy as does the IV injection version. You could ask your new doctor about that. He/she would choose the best type, but according to how best to treat the myeloma. I am not a doctor, and wouldn't know what the medical choice would be for your Dad.
And also, we only live a short distance from the cancer centre in Calgary.That made it easier to be an outpatient, and if I had had to be readmitted (as I was once), I would have been for as long as necessary.
I should have mentioned yesterday that with Velcade, there is now approved for quite a few years, a subcutaneous version of it that does not cause as much neuropathy as does the IV injection version. You could ask your new doctor about that. He/she would choose the best type, but according to how best to treat the myeloma. I am not a doctor, and wouldn't know what the medical choice would be for your Dad.
And also, we only live a short distance from the cancer centre in Calgary.That made it easier to be an outpatient, and if I had had to be readmitted (as I was once), I would have been for as long as necessary.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: My story
Thanks Nancy
I will read up on the intervenous versus subQ use of Velcade
I will read up on the intervenous versus subQ use of Velcade
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: My story
LM,
Velcade is Velcade. It can be administered intravenously or subcutaneously, but it's the same drug in both cases, taken from exactly the same vial. The only difference is how it's administered.
That said, there is evidence that giving the drug subcutaneously will reduce the amount of peripheral neuropathy a patient will experience, without a significant difference in the drug's efficacy. See this Beacon article for more on the subject:
"Subcutaneous Velcade Leads To Similar Response Rates, But Fewer Side Effects, Compared To IV Velcade In Newly Diagnosed Multiple Myeloma," The Myeloma Beacon, Apr 20, 2015.
Velcade is Velcade. It can be administered intravenously or subcutaneously, but it's the same drug in both cases, taken from exactly the same vial. The only difference is how it's administered.
That said, there is evidence that giving the drug subcutaneously will reduce the amount of peripheral neuropathy a patient will experience, without a significant difference in the drug's efficacy. See this Beacon article for more on the subject:
"Subcutaneous Velcade Leads To Similar Response Rates, But Fewer Side Effects, Compared To IV Velcade In Newly Diagnosed Multiple Myeloma," The Myeloma Beacon, Apr 20, 2015.
Re: My story
Thanks Terry,
I'm just hoping that, if they give my dad the CyBorD regimen, they will subQ the Velcade, as my dad already has constant neuropathic numbness and pain in his legs and feet due to the damage the SBP has caused.
I'm just hoping that, if they give my dad the CyBorD regimen, they will subQ the Velcade, as my dad already has constant neuropathic numbness and pain in his legs and feet due to the damage the SBP has caused.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: My story
On the topic of bortezomib, there is now approved in Canada a generic version, from Teva Canada. It is only available in the injectable version though. It is not called 'Velcade', which is a brand name. So I think that it would be a good talking point to emphasize that your father does have severe neuropathy, which you probably already have done!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: My story
Hi Nancy,
I did not know there was a generic version of Velcade available in Canada now. Thanks for that update.
However, there really is no such thing as just an "injectable version" of Velcade. I'm sorry to dwell on this point, but the drug comes in the same form whether it's injected or infused. It's just a question of whether the drug is transferred from the vial into an IV bottle and administered intravenously, or if it's put into a syringe and administered as a subcutaneous injection.
Here is a link to the product monograph for Velcade in Canada:
http://www.janssen.ca/subcategory_docdownload?id=2362
It is labeled "bortezomib for injection", but if you read the entire monograph, you'll see that the "route of administration" is described as either "intravenous or subcutaneous", and there are detailed instructions starting on page 31 on how to administer it either intravenously or subcutaneously.
I haven't been able to find a separate product monograph for Teva's version of Velcade, but I'm not even sure there is one, since it's a generic version of a branded product. It probably is assumed to have the same characteristics as the branded version of the drug, and thus doesn't require a separate monograph of its own.
In any case, just because Teva's version is called "bortezomib for injection" doesn't mean that it only can be administered subcutaneously, since the branded version (Velcade) has exactly the same description.
I did not know there was a generic version of Velcade available in Canada now. Thanks for that update.
However, there really is no such thing as just an "injectable version" of Velcade. I'm sorry to dwell on this point, but the drug comes in the same form whether it's injected or infused. It's just a question of whether the drug is transferred from the vial into an IV bottle and administered intravenously, or if it's put into a syringe and administered as a subcutaneous injection.
Here is a link to the product monograph for Velcade in Canada:
http://www.janssen.ca/subcategory_docdownload?id=2362
It is labeled "bortezomib for injection", but if you read the entire monograph, you'll see that the "route of administration" is described as either "intravenous or subcutaneous", and there are detailed instructions starting on page 31 on how to administer it either intravenously or subcutaneously.
I haven't been able to find a separate product monograph for Teva's version of Velcade, but I'm not even sure there is one, since it's a generic version of a branded product. It probably is assumed to have the same characteristics as the branded version of the drug, and thus doesn't require a separate monograph of its own.
In any case, just because Teva's version is called "bortezomib for injection" doesn't mean that it only can be administered subcutaneously, since the branded version (Velcade) has exactly the same description.
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