Looking for advice or opinions, My wife has lambda light chain myeloma diagnosed 1/2012. She did well on Revlimid until the dose was reduced to 15mg and the lambda started rising. She was offered a trial of a new vaccine which she entered in 10/2013. Since the start of the trial the lambda has gone 45, 99, 118, 140, 204, 216, 149 and now jumped to 228. The last shots of the vaccine are in three weeks and the trial goes on until October. it is my opinion to get out of the trial and get back on a stronger dose of Revlimid and Dex rather than giving the myeloma more of an opportunity to do damage. The trial is a new vaccine and 15 mg of Rev, no Dex.. Any thoughts.
Gary
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garnold - Name: garnold
- Who do you know with myeloma?: Wife
- When were you/they diagnosed?: Jan. 2012
- Age at diagnosis: 67
Re: Lambda going up while in a trial.
I think you need to discuss this with her Oncologist who is hopefully a multiple myeloma specialist. If not then you should seek a multiple myeloma specialist.
Ron
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Lambda going up while in a trial.
We have. Our doctor is a specialist and would like us to stay in the trial. We are too nervous about staying in the trial while watching the number go up. We are thinking the trial is not working and the myeloma is getting a foothold in bones it never appeared in before.
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garnold - Name: garnold
- Who do you know with myeloma?: Wife
- When were you/they diagnosed?: Jan. 2012
- Age at diagnosis: 67
Re: Lambda going up while in a trial.
Hi, I am in a clinical trial which included regular bone marrow biopsies, PET CT's, MRI's, etc. Aren't these being done in your trial? These would be highly pertinent to whether your myeloma is increasing, especially the BMB. The FLC assay is important but it is only one piece. Perhaps, your increase in light chains is caused by something other than the myeloma, i.e. inflammation, infection, etc. I am light chain only too and these are possibilities.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Lambda going up while in a trial.
Terry,
Thanks for your thoughts. We will pass this on to our doctor and hope that may be the case?
as for th BMB's, yes they have been done (3) showing an increase in the, myeloma. The Dr.'s are saying it may take 3 to 5 months or more to see if the vaccine is working.
Thanks for your thoughts. We will pass this on to our doctor and hope that may be the case?
as for th BMB's, yes they have been done (3) showing an increase in the, myeloma. The Dr.'s are saying it may take 3 to 5 months or more to see if the vaccine is working.
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garnold - Name: garnold
- Who do you know with myeloma?: Wife
- When were you/they diagnosed?: Jan. 2012
- Age at diagnosis: 67
Re: Lambda going up while in a trial.
I would definitely get a second opinion in light of the BMB results and concurrent increase in the FLC's. Then again, what if the vaccine ultimately works? Nothing about this disease is easy.
Where is the trial being conducted? Was it presented at ASH? Good luck.
Where is the trial being conducted? Was it presented at ASH? Good luck.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: Lambda going up while in a trial.
Hi Gary,
Most studies have rules written in the protocol as to when a patient has "failed" the treatment. It would not be appropriate to continue patients on studies when treatments are clearly failing and allow a patient to be injured. I am confident that the investigators leading the study have a stopping point in their trial.
Based on the information you have shared at this time your wife is having a "chemical relapse". There is no evidence of systemic problems (e.g.CRAB) from the rise in light chains. When to stop a study or treatment based on a chemical relapse is a judgement call to some degree.
As others have pointed out in response to your posting, the M-spike in myeloma is just part of the picture. Analyses that could help to see how much the myeloma has progressed would include plain skeletal x-rays, bone marrow MRI, 24 hour urine for Bence Jones proteins and a bone marrow biopsy.
Also, the units for the free light chain values are important to be aware of. Some laboratories report free light chain results as mg/L and others as mg/dL. This makes a tenfold difference in the results and can make changes in the free light chain values seem exaggerated.
Overall I agree that you should ask the study doctors when they are going to check to see if your wife is developing any bone or kidney damage from the progressive increase in serum free light chains. It also would be very appropriate to ask them at what point they will consider the study a failure and take her off of the trial.
I applaud your wife for taking part in a research study as research is the only way we can improve the outcome for patients with multiple myeloma. I also wish you both the very best in your struggles with this challenging and difficult disease. Thank you for sharing your questions with the Myeloma Beacon!
Most studies have rules written in the protocol as to when a patient has "failed" the treatment. It would not be appropriate to continue patients on studies when treatments are clearly failing and allow a patient to be injured. I am confident that the investigators leading the study have a stopping point in their trial.
Based on the information you have shared at this time your wife is having a "chemical relapse". There is no evidence of systemic problems (e.g.CRAB) from the rise in light chains. When to stop a study or treatment based on a chemical relapse is a judgement call to some degree.
As others have pointed out in response to your posting, the M-spike in myeloma is just part of the picture. Analyses that could help to see how much the myeloma has progressed would include plain skeletal x-rays, bone marrow MRI, 24 hour urine for Bence Jones proteins and a bone marrow biopsy.
Also, the units for the free light chain values are important to be aware of. Some laboratories report free light chain results as mg/L and others as mg/dL. This makes a tenfold difference in the results and can make changes in the free light chain values seem exaggerated.
Overall I agree that you should ask the study doctors when they are going to check to see if your wife is developing any bone or kidney damage from the progressive increase in serum free light chains. It also would be very appropriate to ask them at what point they will consider the study a failure and take her off of the trial.
I applaud your wife for taking part in a research study as research is the only way we can improve the outcome for patients with multiple myeloma. I also wish you both the very best in your struggles with this challenging and difficult disease. Thank you for sharing your questions with the Myeloma Beacon!
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
7 posts
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