My serum kappa light chains were 5136 on April 30th as I was receiving my diagnosis.
I started Velcade and dexamethasone on May 5th and VRD [Velcade, Revlimid, and dex] on May 25th (I had to clear the pregnancy screening for the Revlimid).
On June 16th, light chains dropped to 1300. Yesterday I found out my draw from last week only showed a drop to 1220.
My auto SCT will be at SCCA and the doctor there said she wanted normal light chains before doing the transplant, but would transplant regardless after 6 rounds of VRD.
Has anyone else experienced this "braking" of improved lab values during treatment?
Since I have mostly been reading and not posting, I will give you a little background. 48 years old, no genetic mutations in bone marrow, lesions everywhere in my body (diagnosis after discovery of a large sacral tumor causing extreme pain), 80% plasma cells and some amyloid cells. No evidence of kidney or cardiac involvement with amyloidosis.
Forums
10 posts
• Page 1 of 1
-
CindyBrown - Name: Cindy Brown
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/26/14
- Age at diagnosis: 48
Re: Free light chains dropping very slowly
Hi Cindy,
What were your M-spike levels at diagnosis and during later blood draws?
What were your M-spike levels at diagnosis and during later blood draws?
-
JimNY
Re: Free light chains dropping very slowly
No detectable M-spike at any time.
-
CindyBrown - Name: Cindy Brown
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/26/14
- Age at diagnosis: 48
Re: Free light chains dropping very slowly
My multiple myeloma is IgD / kappa. My kappa free light chain levels went from about 1500 to 300 after 3 to 4 rounds of Velcade / dex and then stayed there. This was 7 years ago and the RVD regimen was not used then (only under investigation). M spike was so low it was not a usable marker (still isn't, so we don't bother looking at it, only the free light chain levels).
Had a stem cell transplant after 5 rounds and response was everything normal. Today that might be a stringent complete response, but that measure not used at the time. Did not need maintenance for 2 years.
Find out what form of multiple myeloma you have.
Had a stem cell transplant after 5 rounds and response was everything normal. Today that might be a stringent complete response, but that measure not used at the time. Did not need maintenance for 2 years.
Find out what form of multiple myeloma you have.
-
dcsilv
Re: Free light chains dropping very slowly
dcsilv - what report would show that?
-
CindyBrown - Name: Cindy Brown
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/26/14
- Age at diagnosis: 48
Re: Free light chains dropping very slowly
Cindy,
You bring up some very good questions for you as well as many other patients with myeloma. From my reading of your post, it appears that you have "kappa light chain myeloma."
The good news is that you already had a great response after just one cycle. And you are young and healthy without any "high risk" features. Before making major decisions regarding your future treatments, I would like to see another light chain assessment. These tests are very sensitive and we sometimes get false readings, both high and low. If upon rechecking your light chain, it hasn't decreased significantly, then you would have achieved a plateau in your response. Plateau is the term we use as opposed to "braking." I would not consider that bad news. While it is our goal for you to achieve the best response, sometimes that happens with RVD and sometimes a transplant is needed to get that complete response.
The other major issue is length of treatment. We typically treat for 3-4 cycles and then for all patients who achieved at least a partial response, we move forward with transplant. There are ongoing studies that will address whether changing therapy is beneficial prior to transplant for those patients who don't achieve a VGPR or CR with induction therapy.
I hope this helps you and best wishes,
Jlk
You bring up some very good questions for you as well as many other patients with myeloma. From my reading of your post, it appears that you have "kappa light chain myeloma."
The good news is that you already had a great response after just one cycle. And you are young and healthy without any "high risk" features. Before making major decisions regarding your future treatments, I would like to see another light chain assessment. These tests are very sensitive and we sometimes get false readings, both high and low. If upon rechecking your light chain, it hasn't decreased significantly, then you would have achieved a plateau in your response. Plateau is the term we use as opposed to "braking." I would not consider that bad news. While it is our goal for you to achieve the best response, sometimes that happens with RVD and sometimes a transplant is needed to get that complete response.
The other major issue is length of treatment. We typically treat for 3-4 cycles and then for all patients who achieved at least a partial response, we move forward with transplant. There are ongoing studies that will address whether changing therapy is beneficial prior to transplant for those patients who don't achieve a VGPR or CR with induction therapy.
I hope this helps you and best wishes,
Jlk
-
Dr. Jonathan Kaufman - Name: Jonathan Kaufman, M.D.
Beacon Medical Advisor
Re: Free light chains dropping very slowly
Thank you Dr Kaufman. I appreciate that. I reread my consult report from SCCA and the doctor said if my kappa light chain plateaued then she would discuss with my local oncologist whether or not to got to SCT or consider another therapy first. Regardless she said no more than 6 rounds of VRD.
-
CindyBrown - Name: Cindy Brown
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 4/26/14
- Age at diagnosis: 48
Re: Free light chains dropping very slowly
I was diagnosed with multiple myeloma in March of this year. I have lambda light chain myeloma. I started with Revlimid 25mg and dex 20mg and had a slow response. I started at 4493, went up to 4500, then down to 3129 and back up to 3750. We added a once-a-week Velcade shot and, after just 4 shots, my lambda number is now only 148. The kappa/lambda ratio is still off at 0.04.
I will probably be having a SCT after another two months. I still need to discuss that with my doctors. I'm pretty happy about the latest blood test. I have a deletion on chromosome 13 and some abnormality on 14q32.
I wish you the best of luck with your continued treatment. I'm just starting out, so sometimes it's encouraging to read what others have experienced, and sometimes it can be a bit daunting. I'm 60, I have bone involvement with osteoporosis in my spine and one large lesion in the sacrum, anemia, neutropenia, but no kidney damage.
I will probably be having a SCT after another two months. I still need to discuss that with my doctors. I'm pretty happy about the latest blood test. I have a deletion on chromosome 13 and some abnormality on 14q32.
I wish you the best of luck with your continued treatment. I'm just starting out, so sometimes it's encouraging to read what others have experienced, and sometimes it can be a bit daunting. I'm 60, I have bone involvement with osteoporosis in my spine and one large lesion in the sacrum, anemia, neutropenia, but no kidney damage.
-
Pegbb54
Re: Free light chains dropping very slowly
The test would / should have been run when you were first diagnosed. Ask your oncologist for the information. I think the test normally looks quantitatively for IgA, IgG, and IgM. In my case, the information was there, but had to be asked for to get IgD. Now we periodically get the IgD values only which have been normal since my stem cell. I only have a light chain issue, for now. If you only have kappa light chain myeloma, be glad there is a Freelite test.
-
dcsilv
Re: Free light chains dropping very slowly
My husband was diagnosed with Kappa Light Chain multiple myeloma Jan 2012. His first result in Jan was 6700. He started 3 cycles of RVD but was changed to VD after 1.5 cycles due to Kidney issues. He had 3 cycles of inpatient treatments which included Cytoxan, Doxorubican and Etoposide along with the Velcade and Dex.
His light chains grew to 15577 by the end of March, then dropped to 11760 in April, 5400 in early May, then 11840 in late May. June looked better with numbers of 3500 and 4700. Then they went to 7900 in early July and the 4000s in mid-late July. The numbers were very different with each reading and with each lab (in town and out of town specialist).
We had a very good partial remission with a transplant in August which lasted about 18 mos before the numbers started to climb again. He's now on Pomalyst / Dex and his numbers which grew up to 1500 are back down in the 400-300 range. The numbers were consistently going down after the transplant, up after 18 mos, then down after the new regiment. They were erratic before his transplant even with treatments.
We wish you the best of luck with your treatment.
His light chains grew to 15577 by the end of March, then dropped to 11760 in April, 5400 in early May, then 11840 in late May. June looked better with numbers of 3500 and 4700. Then they went to 7900 in early July and the 4000s in mid-late July. The numbers were very different with each reading and with each lab (in town and out of town specialist).
We had a very good partial remission with a transplant in August which lasted about 18 mos before the numbers started to climb again. He's now on Pomalyst / Dex and his numbers which grew up to 1500 are back down in the 400-300 range. The numbers were consistently going down after the transplant, up after 18 mos, then down after the new regiment. They were erratic before his transplant even with treatments.
We wish you the best of luck with your treatment.
-
Dexter
10 posts
• Page 1 of 1
Return to Treatments & Side Effects