An update, with help from a fellow patient

I have had the good fortune to connect with two fellow MM sufferers on a couple of different topics recently and would like to acknowledge both of them.

Today's thanks go to SuzieRose, aka Myeloma Cinderella.  SuzieRose and I differ on our opinions of Arkansas, BB and Total Therapy but she is a remarkably educated patient and has been extremely kind to help "talk me off the ledge" with respect to the recent lab results, as well as digging into my cytogenetic abnormalities.

I'll be acknowledging the help of another friend, DC, in my next couple of posts.  But I'd like to share what SuzieRose told me.  By the way, she keeps her own blog, which can be found here.  It can be rather technical, which may make it somewhat more challenging to approach at times, but it is incredibly well-researched.

Anyhow, in the wake of the last update, I emailed BB and told him I was concerned that he didn't know the significance of the Immunifixation results that showed a faint monoclonal band, noting that I had first reported this result several weeks ago and was told it was nothing to worry about but that it seemed this might have changed.  I reminded him I was negative for MRD, but was concerned that we were no longer confident I remained in complete remission based on his carefully-worded letter.  I asked if I should come back sooner than January for the fine needle aspirations of the persistent focal lesions in my vertebrae (again, these are not active lesions -- they are holes in the bone, essentially, where active lesions used to be).

BB and BJ both wrote back, assuring me that I shouldn't be concerned, and that they'd be reviewing my case with their colleagues to discuss, but that the MRD trumps the IFE test.

This was somewhat calming, but not as much as I'm sure they intended.  After all, if your life depends on your car working, and there's a funny rattle, and the mechanic says "I'm not worried"...well, it's still a little worrisome.

Now, I'm no dummy when it comes to this disease.  I'm a pretty smart guy and I've researched this as well as a non-biologist is generally able to do.  But I don't hold a candle to SuzieRose in this area.  She is the most informed patient I've ever come across.  So I emailed her to ask her opinion about the biology of somebody who is MRD negative but IFE not-so-negative.

Her response was very helpful, citing research from three institutions that indicated that protein bands in the blood were a sign of successful treatment.  Some of this research refers to oligoclonal bands -- multiple monoclonal bands that appeared in my blood in the months after my transplants and which BB at the time said were consistent with profound remission.  However, my current bloodwork doesn't say that there are multiple monoclonal bands.  It says there is a faint monoclonal band that may or may not be the original protein.  So I wasn't going to get any comfort from that.

On the other hand, some of the research indicated that a "second MGUS" of sorts -- a single abnormal protein -- can also emerge after treatment.  And further, this research notes that this cannot be interpreted as disease recurrence, but in fact may be consistent with "eradication" of the disease.  I rather like that characterization.

So for others out there who may find this type of signature in your blood, take heart.  I'm still spooked, of course, and probably will be until the remaining lesions have either fully resolved (more on this in a future update...some doctors don't think they ever resolve) or at least until the marrow from each is tested for MRD and is negative for myeloma.

That said, the research that SuzieRose pulled together for me that references the monoclonal bands was comforting, and is recounted here:

MAYO:

... during the course of MM, new monoclonal gammopathies of an isotype (heavy and/or light chain) distinct from the original MM can emerge.17^,18 This entity, termed secondary MGUS,17 has been hypothesized to be caused by recapitulation of early B-cell ontogeny after stem cell transplantation (SCT).18 Previous investigations suggest that the appearance of a secondary MGUS is associated with better outcome.19^,20 We studied the frequency, characteristics, and natural history of secondary MGUS in MM.

"we have shown by ASO-PCR and sequencing that oligoclonal serum Igs post transplantation is not caused by myeloma related clonal B cells but rather by the regenerating B cell compartment, indicating that the oligoclonal serum Igs post transplantation can not be considered as a sign of relapse of the disease."

Australian Group

"Thus, the initial development of APB (abnormal protein band) appears to be associated with marked reduction in the malignant plasma cell clone as evidenced by the achievement of complete remission and may be a surrogate marker for myeloma eradication.In summary, the development of small APB post-transplant in patients with myeloma is common, appears to have no adverse clinical significance and cannot be considered a sign of disease relapse. "

I'll post again on how SuzieRose helped me understand the incredibly complex lab report that described the cytogenetic abnormalities (i.e., things wrong with my cells) in my bone marrow at diagnosis.