Hi
I was diagnosed with amyloidosis then IgA lambda myeloma in February / March 2011. I had a complete response to CTD [cyclophosphamide, thalidomide, and dexamethasone] and have remained in CR ever since. My bone marrow biopsy [BMB] in April 2012 was normal. I have my bloods tested every 4 weeks. Since being in complete response, I've had no paraprotein and light chains have been normal.
However, this month, things have changed. Although all other bloods are normal, including my immunoglobulins and light chains and there is no BJP in urine, the paraprotein is now showing "IgA lambda on IF".
I have spoken to a doctor at my hospital today who said that it's too early to tell whether my myeloma is relapsing and that the paraprotein could be a transient reading. I don't understand how it could be transient. If I've gone from a normal BMB and no paraprotein every month since, surely this reading is now a progression of the myeloma, albeit in early stages?
Obviously I knew I would relapse one day, but now I think it's happening, I feel so sad and empty.
Alice
Forums
6 posts
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Re: Am I relapsing?
Hi, I am beginning to relapse, and yes it sucks, but at the same time it is so early I feel fine, and even healthier then I felt before I knew I had cancer because I totally changed my lifestyle and now eat vegetarian, go to the gym, etc.
From what my doctor has told me, relapse is measured by the trend in your blood work. So if there are several tests in a row that show a rising monoclonal protein, then that is a "biochemical" relapse (detectable in blood) before symptoms start. She told me that is how a relapse often starts, but also hopes it stays very low level protein for months, to hold off on treatment.
I had a detectable m protein for 6 months before I even knew about it or heard the word relapse uttered.
So I hope in your case the m spike was a one-off thing and disappears again
From what my doctor has told me, relapse is measured by the trend in your blood work. So if there are several tests in a row that show a rising monoclonal protein, then that is a "biochemical" relapse (detectable in blood) before symptoms start. She told me that is how a relapse often starts, but also hopes it stays very low level protein for months, to hold off on treatment.
I had a detectable m protein for 6 months before I even knew about it or heard the word relapse uttered.
So I hope in your case the m spike was a one-off thing and disappears again
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Am I relapsing?
Hi Alice,
We're sorry to hear about how you're feeling right now, and it's completely understandable for you to feel the way you do.
Your doctor knows your particular situation better than we do, so we suspect they have good reasons for believing the paraprotein reading you recently got might be transient. It's also important to realize that, even if the reading turns out not to be transient, a low level reading does not automatically mean relapse, and you could end up having a low reading for a very long time.
If you are interested in how myeloma specialists actually define relapse, this posting by Beacon Medical Advisor Dr. Edward Libby may be helpful:
Good luck, and please keep us updated on how you are doing.
We're sorry to hear about how you're feeling right now, and it's completely understandable for you to feel the way you do.
Your doctor knows your particular situation better than we do, so we suspect they have good reasons for believing the paraprotein reading you recently got might be transient. It's also important to realize that, even if the reading turns out not to be transient, a low level reading does not automatically mean relapse, and you could end up having a low reading for a very long time.
If you are interested in how myeloma specialists actually define relapse, this posting by Beacon Medical Advisor Dr. Edward Libby may be helpful:
Good luck, and please keep us updated on how you are doing.
Re: Am I relapsing?
Dear Alice
I appreciate how you are feeling, and relapse is emotionally challenging and can be scary. Please be reassured we often see transient changes in the IFE as that is a subjective test and can occur after any infection / inflammation / vaccination and may revert to negative.
Also, this may remain at very low levels for many months / year before requiring therapy depending on how things progress. There also are many more options for relapsed patients and how well you responded (with a CR to Velcade and Cytoxan) bodes well for options for therapy.
Finally, please share your feelings with your doctor. All the best.
I appreciate how you are feeling, and relapse is emotionally challenging and can be scary. Please be reassured we often see transient changes in the IFE as that is a subjective test and can occur after any infection / inflammation / vaccination and may revert to negative.
Also, this may remain at very low levels for many months / year before requiring therapy depending on how things progress. There also are many more options for relapsed patients and how well you responded (with a CR to Velcade and Cytoxan) bodes well for options for therapy.
Finally, please share your feelings with your doctor. All the best.
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Dr. Jatin Shah - Name: Jatin Shah, M.D.
Beacon Medical Advisor
Re: Am I relapsing?
Thanks so much for the responses - they are very much appreciated. I feel a little more reassured now.
I have also spoken to my own doctor who isn't overly concerned because it is an IFE reading. He also confirmed that it could be a transient reading. We will have to wait and see what the next test shows in 6 weeks time before any further action, if necessary. I will keep you updated.
Alice
I have also spoken to my own doctor who isn't overly concerned because it is an IFE reading. He also confirmed that it could be a transient reading. We will have to wait and see what the next test shows in 6 weeks time before any further action, if necessary. I will keep you updated.
Alice
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AliceNorth
Re: Am I relapsing?
Something I've just thought of. My monthly blood testing coincided with my bi-annual hospital visit, so I had my light chains tested twice within days of each other. Both samples were tested by the same lab.
Sample 1 showed no paraprotein and normal light chains and ratio.
Sample 2 just three days later showed normal light chains and ratio, but with IgA lambda paraprotein by immunofixation.
Is it likely that such a change could show in this short space of time? I'm guessing so, as it has to at some point!
Alice
Sample 1 showed no paraprotein and normal light chains and ratio.
Sample 2 just three days later showed normal light chains and ratio, but with IgA lambda paraprotein by immunofixation.
Is it likely that such a change could show in this short space of time? I'm guessing so, as it has to at some point!
Alice
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AliceNorth
6 posts
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