As a follow up to Cherie's mention of Poly MVA ... In case anyone is interested, there's an informative discussion about Poly MVA here in the forums. Here's the thread:
https://myelomabeacon.org/forum/poly-mva-has-anyone-tried-this-t147.html
Forums
Re: Kappa light chain / Bence Jones myeloma - confused
Hi Cherie, I wrote that original post a long time ago. In the meantime, I needed to start treatment in May, 2012, when I progressed to active myeloma with a pulmonary embolism, anemia and exploding light chains.
I chose treatment in a clinical trial at the NIH with carfilzomib [Kyprolis] / Revlimid and dexamethasone. I completed 8 cycles in December, 2012, and my marrow was clean. I was so lucky that the treatment worked so well for me and my friends in the triaI (you get to meet a lot of them – it's a small fraternity!). I am now several months into maintenance and my blood counts (RBC, WBC, etc.) are normal and I feel great. Hopefully I am not jinxing myself by saying that!
When I had the pulmonary embolism last year, the ER doctor told me that I was a millimeter away from death. I never forgot that line and I am grateful just to feel normal again. It surely does awaken the spiritual side and I am so fortunate to have more time with my wife and kids and a fighting chance. I also am glad I got to participate in a clinical trial which has proved to be cutting edge. While I was in the trial, Kyprolis was approved by the FDA.
Good luck with everything and thanks for reaching out. Terry L.
I chose treatment in a clinical trial at the NIH with carfilzomib [Kyprolis] / Revlimid and dexamethasone. I completed 8 cycles in December, 2012, and my marrow was clean. I was so lucky that the treatment worked so well for me and my friends in the triaI (you get to meet a lot of them – it's a small fraternity!). I am now several months into maintenance and my blood counts (RBC, WBC, etc.) are normal and I feel great. Hopefully I am not jinxing myself by saying that!
When I had the pulmonary embolism last year, the ER doctor told me that I was a millimeter away from death. I never forgot that line and I am grateful just to feel normal again. It surely does awaken the spiritual side and I am so fortunate to have more time with my wife and kids and a fighting chance. I also am glad I got to participate in a clinical trial which has proved to be cutting edge. While I was in the trial, Kyprolis was approved by the FDA.
Good luck with everything and thanks for reaching out. Terry L.
-
terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Kappa light chain / Bence Jones myeloma - confused
Hi Terry,
That is wonderful to hear. So you never needed a transplant. I am working hard on not needing one myself, in my 7th cycle, starting to visit alternative doctors as I am feeling better and the numbers are coming down.
That is wonderful to hear. So you never needed a transplant. I am working hard on not needing one myself, in my 7th cycle, starting to visit alternative doctors as I am feeling better and the numbers are coming down.
-
lievie007 - Name: Cherie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2012
- Age at diagnosis: 44
Re: Kappa light chain / Bence Jones myeloma - confused
Hi Lievie, good luck with your treatment. Are you in a clinical trial? My stem cells were harvested last September and they are frozen for a rainy day.
-
terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Kappa light chain / Bence Jones myeloma - confused
I am kappa light chain. Mine was detected through my urine test, then my bone marrow test. I was put at stage 1. Nothing in my blood was ever detected. I am being checked every 6 months.
Sometimes I wonder since it wasn't in my blood, should I have a bone biopsy again? My last one was a month before my transplant.
I am going to talk to my doctor more about this in July.
Sometimes I wonder since it wasn't in my blood, should I have a bone biopsy again? My last one was a month before my transplant.
I am going to talk to my doctor more about this in July.
Re: Kappa light chain / Bence Jones myeloma - confused
Hi Gmatt, like me, you are probably a classic example of a light chain only patient. The SPEP simply cannot detect our disease because it produces light chains only, unlike the vast majority of myeloma patients. Our disease represents about 20 percent of myeloma.
If it was detected in the BMB and UPEP, then it is a definitive diagnosis. It would also probably show up in the serum immunofixation, which is usually done in conjunction with the SPEP. The serum IFE shows the presence of, but does not quantify, abnormal immunoglobulins.
Also, the free light chain assay is generally how light chain myeloma is tracked, since we don't have traditional M-spikes. I assume you are getting them. They are serum-based and the most sensitive test available for light chain only myeloma and other types of myeloma.
If it was detected in the BMB and UPEP, then it is a definitive diagnosis. It would also probably show up in the serum immunofixation, which is usually done in conjunction with the SPEP. The serum IFE shows the presence of, but does not quantify, abnormal immunoglobulins.
Also, the free light chain assay is generally how light chain myeloma is tracked, since we don't have traditional M-spikes. I assume you are getting them. They are serum-based and the most sensitive test available for light chain only myeloma and other types of myeloma.
-
terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Kappa light chain / Bence Jones myeloma - confused
Get to a specialist in multiple myeloma. My doctor is head of stem cell transplant at Northwestern University Chicago. Also bone marrow and 24 hour urine important. Good luck. I had stem cell 2 years ago. Need to stay on top of symptoms.
Pop
Pop
-
Leslie beth
Re: Kappa light chain / Bence Jones myeloma - confused
Hi, Terry, when you say "My SPEP is normal but the myeloma proteins appear in my urine and on more advanced serum tests". Do you mean the serum free kappa light chain test? Thanks.
Andy
Andy
Re: Kappa light chain / Bence Jones myeloma - confused
Just wanted to share with you that I have what you have, but my kidneys have becomes clogged with the protein. I have had to start chemo. Not that bad, just tired.
I agree you need another bone marrow biopsy. Mine was only 5. This is all very confusing, but I have none of the CRAB criteria and they were just going to watch me too. Then they did a kidney biopsy to figure out why my GFr was only 34. Do you know what your Gfr is?
Anyway, like someone else wrote, no Motrin, and my doctor wants me to drink two liters of water a day if possible. The only way for you to keep this at bay is to flush your kidneys with as much liquid as you can stand. If you keep it from getting stuck in the kidney, I think your progression will be slow hopefully.
I agree you need another bone marrow biopsy. Mine was only 5. This is all very confusing, but I have none of the CRAB criteria and they were just going to watch me too. Then they did a kidney biopsy to figure out why my GFr was only 34. Do you know what your Gfr is?
Anyway, like someone else wrote, no Motrin, and my doctor wants me to drink two liters of water a day if possible. The only way for you to keep this at bay is to flush your kidneys with as much liquid as you can stand. If you keep it from getting stuck in the kidney, I think your progression will be slow hopefully.
-
Kelleyemery
Re: Kappa light chain / Bence Jones myeloma - confused
My husband had a similar diagnosis in July 2013. His creatinine level was the indicator initially that there was a problem. HIs level was 6.6. He is still not fully recovered, but has a level between 3.7-4.0. He is getting ready for a SCT. Hang in there - there is hope!
-
LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
24 posts
• Page 2 of 3 • 1, 2, 3