My husband has currently been on Kyprolis, Cytoxan [cyclophosphamide], and dex since December 26, 2014.
At the end of his first round of treatment, his lambda light chains dropped from 5594 to 2721.
At the end of his second round of treatment on the morning of his last treatment for that cycle (before the last dose had even been administered), they drew his myeloma markers. Those results came back with his lambda light chains elevated to 2849.
His specialist decided to have him come back and have his myeloma markers drawn the morning he was scheduled to start his third cycle, and that light chain result showed that his lambda light chains had dropped to 2589.
Well, husband just finished his third round of treatment and they drew his myeloma markers the Monday after he finished that cycle. Granted he finished that cycle on a Saturday. His lambda light chains came back at a whopping 4949.
Also his kappa light chains were very suppressed at 0.89 where the reference range is between 3.30-19.40. His creatinine had also bumped up a bit. Normally, his creatinine ranges between 0.70-0.80, but this time it was at 1.02.
Now from looking at those results, it looks like his treatment is not working. However, when they drew his CBC, his hemoglobin was at 11.1. That is the best it has ever been. He has not received a transfusion since early December! At diagnosis, his hemoglobin was 8.3.
So to me, the light chain progression does not match up with his other bloodwork. I have to say even his doctor was somewhat perplexed. Anyway, we saw his doctor on Wednesday, and they are running another light chain assay and hopefully that was just an odd blip on the radar.
I am beginning to wonder if there is an ideal time in regards to running the tests at the end of a cycle of treatment to assess response to treatment. I do wonder if they are running the tests too soon after the end of the cycle of treatment.
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Light chains steady / rising, but hemoglobin improving?
Last edited by Melanie on Sat Mar 07, 2015 1:28 pm, edited 1 time in total.
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Melanie - Name: Melanie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 54
Re: Light chains steady / rising, but hemoglobin improving?
Hi Melanie,
I'm sorry there is so much uncertainty around what exactly is happening during your husband's treatment.
Before I say anything else, just a quick clarification. Your husband has light chain myeloma, right? That's why he's being tracked with only his light chains, not his M-spike?
I'm not a physician, but I'm not sure it is so odd that your husband would see a drop in his light chain markers from blood drawn before the final treatment of a cycle and blood drawn at the beginning of the next cycle. You would expect the final dose of a treatment cycle to have an effect on the markers, wouldn't you?
Also, what exactly has happened with his hemoglobin during the Kyprolis, Cytoxan, dex treatment. You say it is better now than at the time of his diagnosis, but has the hemoglobin been steadily improving during his recent treatment? (I'm guessing that's the case, but just want to check.)
The creatinine levels seem to be changing as you would expect them to change as the kidney is trying to deal with the elevated light chain levels. So it's only the hemoglobin level that may not be tracking the light chain levels as you might expect.
I'm sorry there is so much uncertainty around what exactly is happening during your husband's treatment.
Before I say anything else, just a quick clarification. Your husband has light chain myeloma, right? That's why he's being tracked with only his light chains, not his M-spike?
I'm not a physician, but I'm not sure it is so odd that your husband would see a drop in his light chain markers from blood drawn before the final treatment of a cycle and blood drawn at the beginning of the next cycle. You would expect the final dose of a treatment cycle to have an effect on the markers, wouldn't you?
Also, what exactly has happened with his hemoglobin during the Kyprolis, Cytoxan, dex treatment. You say it is better now than at the time of his diagnosis, but has the hemoglobin been steadily improving during his recent treatment? (I'm guessing that's the case, but just want to check.)
The creatinine levels seem to be changing as you would expect them to change as the kidney is trying to deal with the elevated light chain levels. So it's only the hemoglobin level that may not be tracking the light chain levels as you might expect.
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Jonah
Re: Light chains steady / rising, but hemoglobin improving?
At the end of my husband's second round, they did in fact run the light chains before he had completed the cycle. It was the morning of the dose of his third round of that cycle, before they administered that last dose, and, yes, his light chains were higher than they had been after completion of the first round. That is when the doctor had him come back and had his myeloma markers drawn again BEFORE they started that third round, and his light chains had dropped to below what they were at the completion of the first cycle.
As for the hemoglobin results. At the start of our myeloma journey, his hemoglobin was 8.3. His treatment of RVD [Revlimid, Velcade, dexamethasone] started on August 4th for 4 cycles. During that time, he received at least 6 transfusions to get his hemoglobin up, which tells me that his bone marrow did not have the ability to make adequate red blood cells and hemoglobin.
His last transfusion was on December 18. He started the Kyprolis, Cytoxan and dex on December 26th, and his hemoglobin at that time was 9.2 and has steadily gone up – with no transfusions – to the 11.1.
Granted, I do understand that the Revlimid he was taking during the RVD could have contributed to the low blood counts at that time, but my line of thought also tends to think that, with such a dramatic improvement in his blood counts without transfusions, that there are less myeloma cells in his bone marrow. Even his doctor alluded to this in our discussion and, as I said, it left him somewhat perplexed as well. All of my husband's blood work has steadily improved since starting the Kyprolis, Cytoxan, and dex in December.
My husband's doctor has in fact run a full myeloma panel at the end of every cycle and his M-spike is very small, so the doctorprimarily uses the light chain assessment to track his progress.
As for the hemoglobin results. At the start of our myeloma journey, his hemoglobin was 8.3. His treatment of RVD [Revlimid, Velcade, dexamethasone] started on August 4th for 4 cycles. During that time, he received at least 6 transfusions to get his hemoglobin up, which tells me that his bone marrow did not have the ability to make adequate red blood cells and hemoglobin.
His last transfusion was on December 18. He started the Kyprolis, Cytoxan and dex on December 26th, and his hemoglobin at that time was 9.2 and has steadily gone up – with no transfusions – to the 11.1.
Granted, I do understand that the Revlimid he was taking during the RVD could have contributed to the low blood counts at that time, but my line of thought also tends to think that, with such a dramatic improvement in his blood counts without transfusions, that there are less myeloma cells in his bone marrow. Even his doctor alluded to this in our discussion and, as I said, it left him somewhat perplexed as well. All of my husband's blood work has steadily improved since starting the Kyprolis, Cytoxan, and dex in December.
My husband's doctor has in fact run a full myeloma panel at the end of every cycle and his M-spike is very small, so the doctorprimarily uses the light chain assessment to track his progress.
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Melanie - Name: Melanie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 54
Re: Light chains steady / rising, but hemoglobin improving?
Hi Melanie,
Thanks for the additional information.
You bring up a good point about the possibility that your husband's hemoglobin could be recovering from his having been on a Revlimid-containing regimen prior to his current treatment. I hadn't thought about that. It may explain at least part of the hemoglobin recovery while his light chains are staying so high.
Has your husband been having any imaging done regularly, particularly MRI or (especially) PET or PET/CT? Also, what has been happening with his calcium levels?
I ask these questions because I'm wondering if maybe there is a plasma tumor outside the bone that might be causing the elevated lambda light chain levels. A tumor like that would not affect hemoglobin or blood calcium levels. I don't know, however, whether an "extramedullary" (outside the bone) tumor could cause the kind of free light chain levels your husband has.
Thanks for the additional information.
You bring up a good point about the possibility that your husband's hemoglobin could be recovering from his having been on a Revlimid-containing regimen prior to his current treatment. I hadn't thought about that. It may explain at least part of the hemoglobin recovery while his light chains are staying so high.
Has your husband been having any imaging done regularly, particularly MRI or (especially) PET or PET/CT? Also, what has been happening with his calcium levels?
I ask these questions because I'm wondering if maybe there is a plasma tumor outside the bone that might be causing the elevated lambda light chain levels. A tumor like that would not affect hemoglobin or blood calcium levels. I don't know, however, whether an "extramedullary" (outside the bone) tumor could cause the kind of free light chain levels your husband has.
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Jonah
Re: Light chains steady / rising, but hemoglobin improving?
I'm a light chain kind of guy too 
. In my case, I did not see steady declines in my light chains until the end of the third round. The specialist who was treating me told me there would be a eight-week buffer from first treatment until the effectiveness of the drug showed up.
I was on RVD for six rounds and then had a SCT. My light chains were 3000 when I started and dropped to 100, where they have remained for 2.5 years.
Like your husband, my other key blood markers looked good.
Good luck to you, I suspect you'll see some positive results soon.
. In my case, I did not see steady declines in my light chains until the end of the third round. The specialist who was treating me told me there would be a eight-week buffer from first treatment until the effectiveness of the drug showed up. I was on RVD for six rounds and then had a SCT. My light chains were 3000 when I started and dropped to 100, where they have remained for 2.5 years.
Like your husband, my other key blood markers looked good.
Good luck to you, I suspect you'll see some positive results soon.
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
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