Hello,
My fiance was diagnosed almost exactly one year ago. Did initial treatment (Velcade, cyclophosphamide, and dexamethasone) for about 4 1/2 months and and reached a very good partial response (VGPR) when he did a stem cell transplant last April. In September, he started a clinical trial for Farydak (panobinostat).
Last week he noticed that for two weeks in a row his M-spike went from hardly detectable to two weeks of consecutive increases. As of two weeks ago, it was slightly above the "normal" range. I was unfortunately not at that consultation, so I'm not sure what to think of the little bit of feedback that he provided. The RN simply said that it was "not good" for the M-spike to have increased this soon after the stem cell transplant, but then she apparently also made some comment about a "margin for error." I have also seen some forum discussions about the significance of the "original" M-spike vs a "new" M-spike. I would like to get some perspective around the trends in M-spike following transplant.
We are in the Tampa area, so we go to the Moffitt Cancer Center. Any feedback is greatly appreciated!
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Re: Two increases in M-spike after it was undetectable
Hi,
My dad is in a similar situation. His M-spike was 0.25 pre-stem cell transplant in May and was undetectable afterwards, through August. He is on Revlimid maintenance and headed back to his home state. Then, local oncologist lab results in September showed an 0.3 M-spike, but there was no narrative, just a number.
He came back to Chicago as scheduled to see his myeloma specialist in October and Chicago results showed actually 3 different spikes, according to his specialist. The doctor said it could be oligoclonal banding, a common occurrence post-transplant, but can't tell for sure without a specialized test to see if one of the current spikes is in the same place as his original M-spike. There are a couple posts on forum about oligoclonal banding.
Unfortunately, there is no easy answer to your question. Our doctor said similar to your RN that it would not be good if it was an actual M-spike, but that he wanted to see what next test showed and if M-spike was still there then he would get the mass spectromy test to see if it was really something. And if it was, he would likely recommend a more aggressive post-transplant treatment. But he was hopeful that by the time he saw my dad in December again that the M-spike would resolve itself.
Interestingly, my dad's local M-spike results came back as undetectable in late October a month after showing an 0.3 spike and 2 weeks after the Chicago tests. But we are still waiting to see what the November and then December results show when he comes back to see his specialist again (he gets M-spike tests once a month).
These tests are very complex and there is some interpretative aspect to M-spike results that definitely go beyond my internet MD, especially post-transplant.
I can't imagine that a nurse looking at two weeks of just an M-spike number without any narrative or further interpretation could tell you any detail about what was really happening.
I found this article helpful in explaining how confusing some of this can be even for some doctors:
Singh, G, "Oligoclonal Pattern/Abnormal Protein Bands in Post-Treatment Plasma Cell Myeloma Patients: Implications for Protein Electrophoresis and Serum Free Light Chain Assay Results," Journal of Clinical Medical Research, August 2017 (full text of article) (related press release)
Good luck and I hope this helps.
My dad is in a similar situation. His M-spike was 0.25 pre-stem cell transplant in May and was undetectable afterwards, through August. He is on Revlimid maintenance and headed back to his home state. Then, local oncologist lab results in September showed an 0.3 M-spike, but there was no narrative, just a number.
He came back to Chicago as scheduled to see his myeloma specialist in October and Chicago results showed actually 3 different spikes, according to his specialist. The doctor said it could be oligoclonal banding, a common occurrence post-transplant, but can't tell for sure without a specialized test to see if one of the current spikes is in the same place as his original M-spike. There are a couple posts on forum about oligoclonal banding.
Unfortunately, there is no easy answer to your question. Our doctor said similar to your RN that it would not be good if it was an actual M-spike, but that he wanted to see what next test showed and if M-spike was still there then he would get the mass spectromy test to see if it was really something. And if it was, he would likely recommend a more aggressive post-transplant treatment. But he was hopeful that by the time he saw my dad in December again that the M-spike would resolve itself.
Interestingly, my dad's local M-spike results came back as undetectable in late October a month after showing an 0.3 spike and 2 weeks after the Chicago tests. But we are still waiting to see what the November and then December results show when he comes back to see his specialist again (he gets M-spike tests once a month).
These tests are very complex and there is some interpretative aspect to M-spike results that definitely go beyond my internet MD, especially post-transplant.
I can't imagine that a nurse looking at two weeks of just an M-spike number without any narrative or further interpretation could tell you any detail about what was really happening. I found this article helpful in explaining how confusing some of this can be even for some doctors:
Singh, G, "Oligoclonal Pattern/Abnormal Protein Bands in Post-Treatment Plasma Cell Myeloma Patients: Implications for Protein Electrophoresis and Serum Free Light Chain Assay Results," Journal of Clinical Medical Research, August 2017 (full text of article) (related press release)
Good luck and I hope this helps.
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Cali - Name: Cali
- Who do you know with myeloma?: Father
- When were you/they diagnosed?: November 2017
- Age at diagnosis: 70
Re: Two increases in M-spike after it was undetectable
Thank you so much for your insight! This is perhaps the best overall source of information, both medical and anecdotal, that I have found in the last year! I see that there is a plethora of info in the forums. Thank you for sharing the article. I will read it and share it with my fiancee. Best to you and your dad in this race!
Re: Two increases in M-spike after it was undetectable
Hi mar11668,
As Cali mentions in her post, the key question your fiance's doctors will be trying to answer is whether the reappearance of his M-spike is a case of "oligoclonal banding" or, as it sometimes is called, "secondary MGUS". If you search for those phrases from the forum search box, you'll find a lot of discussions about the topic. Here are a few I was able to find very quickly:
Good luck, and please let us know if you find out anything more from your fiance's doctors, and how the situation eventually resolves.
As Cali mentions in her post, the key question your fiance's doctors will be trying to answer is whether the reappearance of his M-spike is a case of "oligoclonal banding" or, as it sometimes is called, "secondary MGUS". If you search for those phrases from the forum search box, you'll find a lot of discussions about the topic. Here are a few I was able to find very quickly:
- "Oligoclonal banding post stem cell transplant" (started Aug 16, 2015)
- "Implications of oligoclonal bands in multiple myeloma" (started Aug 18, 2011)
- "Secondary MGUS" (started Mar 12, 2016)
- "Secondary MGUS M-spike levels" (started Sep 21, 2015)
- "Secondary MGUS - articles" (started Apr 10, 2016)
Good luck, and please let us know if you find out anything more from your fiance's doctors, and how the situation eventually resolves.
Re: Two increases in M-spike after it was undetectable
I'd like to weigh in on this discussion. I had an autologous stem cell transplant in October, 2014. In December, 2014, to May, 2015, I had a small amount of M-protein showing up, which was IgG lambda and sometimes kappa. My presenting diagnosis was IgA kappa. It was a very small M-pike, or sometimes too small to quantify. It disappeared.
It is important for you to know if this new M-protein is the same type as the original. The definition of oligoclonal banding is that the M-protein is always a different type from the original M-protein at diagnosis. You should be able to find that out pretty easily from the immunofixation that was performed, since it is usually identified on the report.
Back to my case. Fast forward to December, 2017. Same thing. Tiny IgG lambda detected. Too small to quantify as an M-spike. This lasted about 6 weeks, then, again, disappeared.
In your father's case, if this is oligoclonal banding, this is sometimes seen as a good thing. Your father's immune system is "rebooting" in a sense. Some studies suggest an actual survival benefit among patients who experience this.
Also, sometimes there can be a small M-spike with autoimmune diseases. Does he have any of those, like rheumatoid arthritis or inflammatory bowel disease?
Good luck. Hopefully, this is a good sign, and should resolve within a year or so, from what my research told me when I had it. If you can find out what type of m-protein it is, you should have a better idea of things.
Please let us know what you find out, if you can.
It is important for you to know if this new M-protein is the same type as the original. The definition of oligoclonal banding is that the M-protein is always a different type from the original M-protein at diagnosis. You should be able to find that out pretty easily from the immunofixation that was performed, since it is usually identified on the report.
Back to my case. Fast forward to December, 2017. Same thing. Tiny IgG lambda detected. Too small to quantify as an M-spike. This lasted about 6 weeks, then, again, disappeared.
In your father's case, if this is oligoclonal banding, this is sometimes seen as a good thing. Your father's immune system is "rebooting" in a sense. Some studies suggest an actual survival benefit among patients who experience this.
Also, sometimes there can be a small M-spike with autoimmune diseases. Does he have any of those, like rheumatoid arthritis or inflammatory bowel disease?
Good luck. Hopefully, this is a good sign, and should resolve within a year or so, from what my research told me when I had it. If you can find out what type of m-protein it is, you should have a better idea of things.
Please let us know what you find out, if you can.
Re: Two increases in M-spike after it was undetectable
Cali,
I have had an interest in secondary MGUS for many years now. Some of the forum threads listed above include posts from me detailing my experience with this phenomenon. I had not previously seen the article that you refer to in your post. Thanks for bringing it to our attention. It certainly highlights the difficulty from a scientific standpoint in attempting to distinguish between bands that reflect malignant disease and those that do not.
I have had an interest in secondary MGUS for many years now. Some of the forum threads listed above include posts from me detailing my experience with this phenomenon. I had not previously seen the article that you refer to in your post. Thanks for bringing it to our attention. It certainly highlights the difficulty from a scientific standpoint in attempting to distinguish between bands that reflect malignant disease and those that do not.
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Two increases in M-spike after it was undetectable
Thank you for this interesting discussion. It raises some issues I was unaware of. And thanks for the article, Cali.
My situation is a bit different. I almost achieved a very good partial response (VGPR) when I went in for my stem cell transplant (SCT), but even after the transplant, my M-spike returned quickly enough that the transplant team labelled the treatment ineffective or a failure. This was disheartening, but I came home at the start of April, 2015, and my M-spike is now 0.9 - 1.0 g/dL (9-10 g/l). So it has increased but VERY slowly over time. I still have immunosuppression and so forth, but my light chain ratio is good, renal functions are doing OK.
So I don't know if my question really fits well here, but this discussion does make me wonder if the M-spike we are seeing is something different than the original M-spike and proteins I had during initial treatment. I do have some autoimmune irregularities such as vitiligo. I just am not sure what is going on. At this point, my doctors are saying that the M-spike is not high enough to warrant treatment again, and scans done earlier this year did not show significant evidence of bone deterioration or tumors.
So, I am grasping at straws here, but I just wondered if anyone might have some useful perspective on this? Thank you all!
My situation is a bit different. I almost achieved a very good partial response (VGPR) when I went in for my stem cell transplant (SCT), but even after the transplant, my M-spike returned quickly enough that the transplant team labelled the treatment ineffective or a failure. This was disheartening, but I came home at the start of April, 2015, and my M-spike is now 0.9 - 1.0 g/dL (9-10 g/l). So it has increased but VERY slowly over time. I still have immunosuppression and so forth, but my light chain ratio is good, renal functions are doing OK.
So I don't know if my question really fits well here, but this discussion does make me wonder if the M-spike we are seeing is something different than the original M-spike and proteins I had during initial treatment. I do have some autoimmune irregularities such as vitiligo. I just am not sure what is going on. At this point, my doctors are saying that the M-spike is not high enough to warrant treatment again, and scans done earlier this year did not show significant evidence of bone deterioration or tumors.
So, I am grasping at straws here, but I just wondered if anyone might have some useful perspective on this? Thank you all!
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dranton - Name: Anton Tolman
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: August, 2014
- Age at diagnosis: 51
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