Hi AC:
I had my stem cell transplant almost the same day you did (I think) – May 13th. I am no doctor, nor an expert at reading all these tests, but my kappa light chain standard range is 3.30-19.40 - mine count is 14.01. So according to my test, at 13, you are in range. More importantly, what is your ratio? Mine is 0.73 (range is 0.26-1.65).
KSH
Forums
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kshornb - Name: kshornber
- Who do you know with myeloma?: self
- When were you/they diagnosed?: July 2015
- Age at diagnosis: 52
Re: AC's stem cell transplant in South Florida
AC,
I wish I had an answer for you. However, I do want to remind you that the "success" of a transplant is not generally evaluated until the 100th day or thereabouts. I think that is because the numbers can bounce around quite a bit after the transplant.
I'm sure you will discuss this with your doctor. Please let us know what he/she has to say.
The fact that you have no M-spike, and no monoclonal protein showing up, is excellent.
What type of multiple myeloma did you have at diagnosis? I don't remember.
How is the rash? Has it resolved?
Hang in there, AC, and try not to get ahead of things. This could easily be a normal variation in recovery.
Ellen Harris
I wish I had an answer for you. However, I do want to remind you that the "success" of a transplant is not generally evaluated until the 100th day or thereabouts. I think that is because the numbers can bounce around quite a bit after the transplant.
I'm sure you will discuss this with your doctor. Please let us know what he/she has to say.
The fact that you have no M-spike, and no monoclonal protein showing up, is excellent.
What type of multiple myeloma did you have at diagnosis? I don't remember.
How is the rash? Has it resolved?
Hang in there, AC, and try not to get ahead of things. This could easily be a normal variation in recovery.
Ellen Harris
Re: AC's stem cell transplant in South Florida
Thank you Ellen. I am praying you are right. I see my myeloma specialist on Tuesday.
I was diagnosed with kappa light chain myeloma in December 2015 when I had a plasmacytoma crush my L3. My kappa light chain number was as high as 1019 when I started my induction therapy in February and the kappa light chain level fell to 40 on April 19 before my stem cell transplant.
AC
I was diagnosed with kappa light chain myeloma in December 2015 when I had a plasmacytoma crush my L3. My kappa light chain number was as high as 1019 when I started my induction therapy in February and the kappa light chain level fell to 40 on April 19 before my stem cell transplant.
AC
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: AC's stem cell transplant in South Florida
AC,
I should have specified when I asked you what type of myeloma you have. I meant which isotope – IgG, IgA, or IgM. Also, you may have confused some of your light chain measurements. It's easy to do. Every lab is different. If they put the decimal point in the wrong place, you could be easily mislead. I realized this after reading one of the previous posters.
I'm betting that this is what happened, but even if not, I think the light chains may just not have settled yet. You will get some good answers tomorrow, I'm sure. In the meantime (easy for me to say), try to stay calm. It is too early in the game to know what these numbers may or may not mean.
I meant to tell you that you have a very good looking bald head! Hang in there and please keep us posted!
Ellen Harris
I should have specified when I asked you what type of myeloma you have. I meant which isotope – IgG, IgA, or IgM. Also, you may have confused some of your light chain measurements. It's easy to do. Every lab is different. If they put the decimal point in the wrong place, you could be easily mislead. I realized this after reading one of the previous posters.
I'm betting that this is what happened, but even if not, I think the light chains may just not have settled yet. You will get some good answers tomorrow, I'm sure. In the meantime (easy for me to say), try to stay calm. It is too early in the game to know what these numbers may or may not mean.
I meant to tell you that you have a very good looking bald head! Hang in there and please keep us posted!
Ellen Harris
Re: AC's stem cell transplant in South Florida
Hello Ellen & Others,
I would like to see what everyone's recommendation is after going to my myeloma specialist yesterday.
I am currently on Day +40 after the stem cell transplant, but after talking with my myeloma specialist, it appears that even though the numbers will jump around until Day 100, my light chain myeloma survived the melphalan. My doctors want me to possibly start Darzalex (daratumamab) 100 days after. I am also interested in an allo (donor) stem cell transplant or another auto stem cell transplant.
Any comments would be appreciated.
Thank you,
AC
I would like to see what everyone's recommendation is after going to my myeloma specialist yesterday.
I am currently on Day +40 after the stem cell transplant, but after talking with my myeloma specialist, it appears that even though the numbers will jump around until Day 100, my light chain myeloma survived the melphalan. My doctors want me to possibly start Darzalex (daratumamab) 100 days after. I am also interested in an allo (donor) stem cell transplant or another auto stem cell transplant.
Any comments would be appreciated.
Thank you,
AC
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: AC's stem cell transplant in South Florida
AC,
Do you have any siblings who could be tested to be a match for your possible allo?
If you choose to start Darzalex, when is your doc recommending you start, and would it be combined with anything else, or used as a single agent? What did your doc have to say about a tandem?
Even though you are seeing a myeloma specialist, I would go for another opinion.
Let us know what you decide.
Best, Ellen Harris
Do you have any siblings who could be tested to be a match for your possible allo?
If you choose to start Darzalex, when is your doc recommending you start, and would it be combined with anything else, or used as a single agent? What did your doc have to say about a tandem?
Even though you are seeing a myeloma specialist, I would go for another opinion.
Let us know what you decide.
Best, Ellen Harris
Re: AC's stem cell transplant in South Florida
Hi AC,
I'm sorry the stem cell transplant hasn't worked so well for you. I'll keep my fingers crossed that you see some sort of delayed response between now and Day 100.
Can you tell us more about what treatments you've had so far and how you responded to them?
As far as I can tell, you were diagnosed with kappa light chain multiple myeloma. Your kappa free light chain level at diagnosis was 1028, but I don't know what the units for that were (mg/l or mg/dl). You also mentioned somewhere that your kappa free light chain levels dropped by about a half early in treatment with Revlimid, Velcade, and dexamethasone, but I can't find anywhere where you mention if they ever got into the normal range, or what happened with your kappa/lambda ratio.
I think in a situation like this that you really want to be sure that you are under the care of a myeloma specialist. I know there is at least one at Sylvester (Dr. Hoffman), where you had your transplant, but I don't know if is one of the physicians you are seeing regularly. I get the sense that you mainly consult with physicians at the Cleveland Clinic in your area, and I'm not sure there are any myeloma specialists (rather than general hematologist-oncologists) at that branch of the Cleveland Clinic.
If you are thinking about having an allo transplant, then it would be worth considering taking a trip up to Tampa to be seen at Moffitt. They do a lot of allo transplants for many different diseases, including multiple myeloma. They know what they're doing. They also have a large multiple myeloma group there, so it could be a great place to get a second opinion. Your case could benefit from some fresh eyes looking it over.
Darzalex would be a perfectly reasonable next treatment. I'm sure your doctor would combine it with at least dexamethasone. Whether or not something else, such as Revlimid or Velcade, or perhaps Pomalyst or even Kyprolis, should be added in, depends a bit on how you responded to your first treatment.
Whatever you and your doctors decide, make sure you have a plan not just for the next step, but the step or two after that.
Also, as many people here will say who know what they're talking about, the key is to make sure you fully exploit all available treatments while keeping your disease under control and making sure the toxicity of the treatments does not build up too much over time.
So it will help if you and your doctors don't abandon treatments before you know for sure that they're not working. Maybe it will be worth trying consolidation with Revlimid, Velcade, and dex before switching to Darzalex? Also, there are some older chemo regimens (DCEP) that can be quite toxic, but which shouldn't be forgotten – particularly for a younger patient such as yourself.
The more treatments you exploit and exhaust, the longer your overall survival is likely to be.
Good luck!
I'm sorry the stem cell transplant hasn't worked so well for you. I'll keep my fingers crossed that you see some sort of delayed response between now and Day 100.
Can you tell us more about what treatments you've had so far and how you responded to them?
As far as I can tell, you were diagnosed with kappa light chain multiple myeloma. Your kappa free light chain level at diagnosis was 1028, but I don't know what the units for that were (mg/l or mg/dl). You also mentioned somewhere that your kappa free light chain levels dropped by about a half early in treatment with Revlimid, Velcade, and dexamethasone, but I can't find anywhere where you mention if they ever got into the normal range, or what happened with your kappa/lambda ratio.
I think in a situation like this that you really want to be sure that you are under the care of a myeloma specialist. I know there is at least one at Sylvester (Dr. Hoffman), where you had your transplant, but I don't know if is one of the physicians you are seeing regularly. I get the sense that you mainly consult with physicians at the Cleveland Clinic in your area, and I'm not sure there are any myeloma specialists (rather than general hematologist-oncologists) at that branch of the Cleveland Clinic.
If you are thinking about having an allo transplant, then it would be worth considering taking a trip up to Tampa to be seen at Moffitt. They do a lot of allo transplants for many different diseases, including multiple myeloma. They know what they're doing. They also have a large multiple myeloma group there, so it could be a great place to get a second opinion. Your case could benefit from some fresh eyes looking it over.
Darzalex would be a perfectly reasonable next treatment. I'm sure your doctor would combine it with at least dexamethasone. Whether or not something else, such as Revlimid or Velcade, or perhaps Pomalyst or even Kyprolis, should be added in, depends a bit on how you responded to your first treatment.
Whatever you and your doctors decide, make sure you have a plan not just for the next step, but the step or two after that.
Also, as many people here will say who know what they're talking about, the key is to make sure you fully exploit all available treatments while keeping your disease under control and making sure the toxicity of the treatments does not build up too much over time.
So it will help if you and your doctors don't abandon treatments before you know for sure that they're not working. Maybe it will be worth trying consolidation with Revlimid, Velcade, and dex before switching to Darzalex? Also, there are some older chemo regimens (DCEP) that can be quite toxic, but which shouldn't be forgotten – particularly for a younger patient such as yourself.
The more treatments you exploit and exhaust, the longer your overall survival is likely to be.
Good luck!
Re: AC's stem cell transplant in South Florida
Thank you for the responses.
I was diagnosed in December with multiple myeloma and in the initial biopsy on January 4th I had a 70% plasma cell percentage. On February 4, 2016 my serum kappa free light chain level was 1009 mg/L.
I was placed on Revlimid, Velcade, and dex for four cycles. That ended on April 19th. When I ended my four cycles, my kappa free light chain level had decreased to 40 mg/L and my plasma cell percentage had decreased to 20%.
I started my stem cell transplant on May 10th and was released from the hospital at the end of May. in the second week of June, Sylvester took samples and my kappa free light chain level had increased to 112 mg/L already. During the time I had and still have a bad rash that was brought upon by a reaction to a chemical or medicine that they are still not sure of which one. My eosinophils had increased to over 18%, which I was told was very high compared to normal.
I believe that might be a good idea to get a second opinion from the Sylvester doctor. My myeloma doctor at Cleveland suggested he might want to start me on daratumumab (Darzalex) after the end of the 100 day mark.
I received my new kappa free light chain number from this past Tuesday and my kappa level is 110, which is a decrease from 135 last week.
This week numbers:
WBC, 6.2
Hemoglobin, 13.2
Platelets, 283
Calcium, 9.6
Protein, 6.8
Albumin, 4.6
I have expressed to my Cleveland Clinic doctor that I would be interested in either a tandem auto or an allo if it would be beneficial and could push me into complete remission. I have a brother and twin sisters (one with MS) who are willing donors, and I also have cousins who are willing donors.
Any comments would be greatly appreciated.
AC
I was diagnosed in December with multiple myeloma and in the initial biopsy on January 4th I had a 70% plasma cell percentage. On February 4, 2016 my serum kappa free light chain level was 1009 mg/L.
I was placed on Revlimid, Velcade, and dex for four cycles. That ended on April 19th. When I ended my four cycles, my kappa free light chain level had decreased to 40 mg/L and my plasma cell percentage had decreased to 20%.
I started my stem cell transplant on May 10th and was released from the hospital at the end of May. in the second week of June, Sylvester took samples and my kappa free light chain level had increased to 112 mg/L already. During the time I had and still have a bad rash that was brought upon by a reaction to a chemical or medicine that they are still not sure of which one. My eosinophils had increased to over 18%, which I was told was very high compared to normal.
I believe that might be a good idea to get a second opinion from the Sylvester doctor. My myeloma doctor at Cleveland suggested he might want to start me on daratumumab (Darzalex) after the end of the 100 day mark.
I received my new kappa free light chain number from this past Tuesday and my kappa level is 110, which is a decrease from 135 last week.
This week numbers:
WBC, 6.2
Hemoglobin, 13.2
Platelets, 283
Calcium, 9.6
Protein, 6.8
Albumin, 4.6
I have expressed to my Cleveland Clinic doctor that I would be interested in either a tandem auto or an allo if it would be beneficial and could push me into complete remission. I have a brother and twin sisters (one with MS) who are willing donors, and I also have cousins who are willing donors.
Any comments would be greatly appreciated.
AC
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: AC's stem cell transplant in South Florida
Thanks for that additional information, AC.
You shouldn't really draw conclusions from your FLC results from just one of the light chain levels (kappa or lambda). The level is important, but just as important is the kappa / lambda ratio.
What was your kappa / lambda ratio right before your transplant, and what have the kappa / lambda ratios been post transplant?
Your doctors may not be getting too excited about your free light chain results because your kappa / lambda ratio may not be changing very much. This would be happening if both your kappa and lambda levels are elevated due to infections or some other reason other than multiple myeloma.
You shouldn't really draw conclusions from your FLC results from just one of the light chain levels (kappa or lambda). The level is important, but just as important is the kappa / lambda ratio.
What was your kappa / lambda ratio right before your transplant, and what have the kappa / lambda ratios been post transplant?
Your doctors may not be getting too excited about your free light chain results because your kappa / lambda ratio may not be changing very much. This would be happening if both your kappa and lambda levels are elevated due to infections or some other reason other than multiple myeloma.
Re: AC's stem cell transplant in South Florida
Hi AC:
I am not the expert on light chain issues, but I just wanted to add one comment. I recall a transplant doctor stating that he does not even take any marker tests until at least 80 or 90 days, as the numbers are too unstable. I have heard other posters mention that also on the Beacon. There are some cases where there is good reason to try and get some early readings, however, I understand in that case, the readings should be taken with a grain of salt. Good luck to you. Rgds,
I am not the expert on light chain issues, but I just wanted to add one comment. I recall a transplant doctor stating that he does not even take any marker tests until at least 80 or 90 days, as the numbers are too unstable. I have heard other posters mention that also on the Beacon. There are some cases where there is good reason to try and get some early readings, however, I understand in that case, the readings should be taken with a grain of salt. Good luck to you. Rgds,
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JPC - Name: JPC
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