My mother had a transplant April 2017. She has 17p deletion. Because of this deletion, she has a three-drug regimen for maintenance.
March 30, 2018 she had her re-staging and was totally clear. PET was clear, biopsy was clear, and numbers were good.
She is being treated for maintenance at her local oncologist and they draw her kappa light chain every cycle. Last cycle she was just above normal for the first time. This cycle we got her labs back and they are virtually the same as last.
Does this mean that the maintenance has already stopped working?
The plan is to watch the trend and we are prepared she may have to change maintenance. How is this possible so soon after clear scans?
I don't want to jump to a new drug too soon in fear of running out and at the same time I am fearful the myeloma will get only stronger. Is it possible that her numbers will go back to normal?
High range of normal is 1.94 and she is 2.46. Last cycle she was 2.44.
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mimigrin - Name: Mimi
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: October 2016
- Age at diagnosis: 62
Re: Has maintenance therapy stopped working?
mimigrin,
Based on my own experience, I would say that it is quite possible that your mother’s free light chains will decline back to within the normal range. These two readings do not necessarily mean that maintenance has begun to fail. The favorable biopsy and PET scan, which I assume are recent, supports that interpretation.
I have had similar experiences in which my free light chains started climbing, but then resumed their decline. In my case, they did not increase beyond the normal range, but did come pretty close to doing that. It is the pattern – a pattern of more than a few readings – that is important.
Please do not allow these few readings to frighten you or your mother. Talk to your oncologist and try to maintain a positive outlook (and I know that can be quite difficult). The plan you mention, to watch the trend, is the way to go.
And even if a pattern emerges over a few more readings that indicates maintenance may be faltering, there are now more drugs and drug combinations than ever to try, and switching to a different combination may very well reinstate your mother’s normal light chain level.
Good luck, and here’s hoping these readings are indeed insignificant outliers, and her future levels will again drop back to normal.
Based on my own experience, I would say that it is quite possible that your mother’s free light chains will decline back to within the normal range. These two readings do not necessarily mean that maintenance has begun to fail. The favorable biopsy and PET scan, which I assume are recent, supports that interpretation.
I have had similar experiences in which my free light chains started climbing, but then resumed their decline. In my case, they did not increase beyond the normal range, but did come pretty close to doing that. It is the pattern – a pattern of more than a few readings – that is important.
Please do not allow these few readings to frighten you or your mother. Talk to your oncologist and try to maintain a positive outlook (and I know that can be quite difficult). The plan you mention, to watch the trend, is the way to go.
And even if a pattern emerges over a few more readings that indicates maintenance may be faltering, there are now more drugs and drug combinations than ever to try, and switching to a different combination may very well reinstate your mother’s normal light chain level.
Good luck, and here’s hoping these readings are indeed insignificant outliers, and her future levels will again drop back to normal.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Has maintenance therapy stopped working?
Thank you so much for taking the time to write. It means a lot to have reassurance not to worry. It is so hard when you love someone so very much!
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mimigrin - Name: Mimi
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: October 2016
- Age at diagnosis: 62
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