Hello-
My husband had a SCT in January, 2012, after his m-spike started going up after a year on maintanence Velcade/dex (he is allergic to Revlimid). After the SCT, he got down to what appeared to be a CR or a VGPR, depending on who was interpreting the results (2 different labs). In September he found 2 new lumps (shin and cranium) and began having pain in his arm (a site of many lesions in the past). Every blood test, though, said that the cancer wasn't active (m-spike = 0.0). They biopsied the lump on his shin, however, and it was positive as a plasmacytoma.
He started on carfilzomib in October, increasing the dose in the second round due to lack of response (the only marker we can use is the size of the lumps). They also then ordered a PET scan. The thing is, his bones showed *no* activity. They can see the lump on his leg as active, but no activity on his head (it wasn't biopsied as it was too small to get a good sample...we are 95% sure it's myeloma, though, as it is exactly the same texture, location, etc, as previous lumps that went away during the SCT chemo last winter and left holes behind...plus, after the increased dose of carfilzomib, it started to shrink). The PET scan also seemed to indicate that the arm pain is not in the bone, but inflamation around it (they couldn't tell me definitely it wasn't another plasmacytoma, though).
Because the shin is the only place they have clinical evidence that the cancer is active, they've moved from chemo to local radiation. (I should say that his Dr is still pursuing finding out what's happening in his arm- she's not dropping the ball on that one).
Sorry for the long-winded back story, but my questions are these:
1) A lot of studies talk about "early relapse" after SCT (meaning disease progression in less than 12 months)- does anyone know if this usually refers to a readable m-spike or any evidence of active disease?
2) Is location of the disease (i.e. plasmacytoma only vs. marrow involvement) a prognosticative indicator, and, if so, what does it indicate?
3) Has anyone out there had this experience (plasmacytomas with no m-spike) and how did you handle it (chemo, radiation, etc)?
4) Any suggestions (besides constant scans) on how to monitor a disease that won't show up on blood tests?
Thanks so much for taking the time to read this, and thanks in advance for any info/tips/etc you might have.
Thanks,
Emily
Forums
7 posts
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Re: SCT relapse- but not in the marrow
Hello Emily, I am not qualified to answer your questions, however, I do know that a slight M-Spike or lack thereof, does not give the whole answer for a multiple myeloma patient. The IGG, IGA, Kappa, Free K/L, SPEP and UPEP, numbers tell a more definitive story.
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GeorgeLJurak - Name: George Jurak
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan. 2011
- Age at diagnosis: 59
Re: SCT relapse- but not in the marrow
GeorgeLJurak wrote:
> Hello Emily, I am not qualified to answer your questions, however, I do
> know that a slight M-Spike or lack thereof, does not give the whole answer
> for a multiple myeloma patient. The IGG, IGA, Kappa, Free K/L, SPEP and
> UPEP, numbers tell a more definitive story.
I'm IgG/Kappa. I'm wondering if that is why the doctor has told me to keep an eye on my creatinine and hemoglobin numbers more than anything else.
> Hello Emily, I am not qualified to answer your questions, however, I do
> know that a slight M-Spike or lack thereof, does not give the whole answer
> for a multiple myeloma patient. The IGG, IGA, Kappa, Free K/L, SPEP and
> UPEP, numbers tell a more definitive story.
I'm IgG/Kappa. I'm wondering if that is why the doctor has told me to keep an eye on my creatinine and hemoglobin numbers more than anything else.
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Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
Re: SCT relapse- but not in the marrow
Dear Emily,
I am a post-transplant patient on Velcade maintenance, 1.5 years out from transplant. Several months ago, when I had my first PET scan, the doctors discovered what they believed was a small plasmacytoma in my scapula. Whether it was new or untouched by previous therapies, however, was unclear, as the doctors had no previous baseline PET results for comparison. Bone marrow and blood tests were all normal, with no abnormal plasma cells in the marrow and no M-Spike. Consequently, the doctors treated the spot with radiation, leaving my maintenance therapy unchanged. We are waiting until the next PET scan before deciding how to proceed.
I am a post-transplant patient on Velcade maintenance, 1.5 years out from transplant. Several months ago, when I had my first PET scan, the doctors discovered what they believed was a small plasmacytoma in my scapula. Whether it was new or untouched by previous therapies, however, was unclear, as the doctors had no previous baseline PET results for comparison. Bone marrow and blood tests were all normal, with no abnormal plasma cells in the marrow and no M-Spike. Consequently, the doctors treated the spot with radiation, leaving my maintenance therapy unchanged. We are waiting until the next PET scan before deciding how to proceed.
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RichardJ
Re: SCT relapse- but not in the marrow
Dear Emily,
My husband started 3 years ago with a single Plasmacytoma in the spine which was treated with radiation. (Needed surgery ultimately because of total collapse of the vertabrae) He was monitored by his oncologyst/hemotologist with regular tests for the M protein, which was never was detected. He next noticed a bump on his skull which was biopsied and was positive for Plasmacytoma. Biopsy of the hip showed no multiple myeloma. No M protein showed in the blood tests. However, finally a PetScan was ran which showed that he had jumped to stage three multiple myeloma! How did the doctor miss the progression? By not running a Freelite test, which would have picked up the fact that he had non-secretory light chain multiple myeloma. You must insist that this test is done, especially if no M protein is evident.
Less that 5% of multiple myeloma cancer do not show an M spike at all, although the cancer is progressing. In my husbands case he he has lambda light chain version. Never has the M spike showed and never has a hip/bone biopsy been positive for Multiple Myleloma, yet the disease progression was taking place. I read about this Freelite blood test which can detect previously undetectible amounts of the disease, but when I approached Doctor she was not familiar and not willing to listen. She also told us that the Petscan was not indicated when we requested it. Wrong on both accounts! In his case the Petscan & FreeLite test are the only way to monitor his disease.
He just completed a stem cell transplant at City of Hope in Durate, CA on 11/05/12. What a terrific hospital! We are home now, his health is returning and we are ready to ring in the New Year 2013!
My husband started 3 years ago with a single Plasmacytoma in the spine which was treated with radiation. (Needed surgery ultimately because of total collapse of the vertabrae) He was monitored by his oncologyst/hemotologist with regular tests for the M protein, which was never was detected. He next noticed a bump on his skull which was biopsied and was positive for Plasmacytoma. Biopsy of the hip showed no multiple myeloma. No M protein showed in the blood tests. However, finally a PetScan was ran which showed that he had jumped to stage three multiple myeloma! How did the doctor miss the progression? By not running a Freelite test, which would have picked up the fact that he had non-secretory light chain multiple myeloma. You must insist that this test is done, especially if no M protein is evident.
Less that 5% of multiple myeloma cancer do not show an M spike at all, although the cancer is progressing. In my husbands case he he has lambda light chain version. Never has the M spike showed and never has a hip/bone biopsy been positive for Multiple Myleloma, yet the disease progression was taking place. I read about this Freelite blood test which can detect previously undetectible amounts of the disease, but when I approached Doctor she was not familiar and not willing to listen. She also told us that the Petscan was not indicated when we requested it. Wrong on both accounts! In his case the Petscan & FreeLite test are the only way to monitor his disease.
He just completed a stem cell transplant at City of Hope in Durate, CA on 11/05/12. What a terrific hospital! We are home now, his health is returning and we are ready to ring in the New Year 2013!
-
CMC
Re: SCT relapse- but not in the marrow
Thanks for the replies everybody- I appreciate the info and insights! They finally biopsied the lump on my husband's head yesterday and it is (as we suspected) also a plasmacytoma. We'll find out Monday if they'll do radiation for this site too or move back to chemo. The PET scan from just a couple of weeks ago did not show this spot as active, even though we were pretty sure it was, so I'm a little bummed that it seems like one of the main diagnostic tools we have doesn't seem to be particularly useful in this particular situation. His Dr is monitoring my husband's light chains, etc (she tends to err on the side of more tests/info then less, which is a good match for us) and she is still pursuing finding out the source of my husband's arm pain (I think it's another plasmacytoma, since it's in the same place as some lytic lesions, but we'll see).
Thanks again for the responses.
Emily
Thanks again for the responses.
Emily
Re: SCT relapse- but not in the marrow
I know you state that nothing is showing in the blood tests, but are they doing the blood work that quantifies the presence of light chains and the ratio between them? I have non-secretory multiple myeloma and I will not show an M-spike even when the cancer is active. However, the blood test for light chains does give a good indicator of what is happening.
Good Luck and the Best to you and your husband.
Good Luck and the Best to you and your husband.
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Tom184 - Name: Tom
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: January 2011
- Age at diagnosis: 64
7 posts
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