Every time I think I don’t need to worry, I find more to worry about.
In the wake of last week’s little goof-up with the remission terminology, BJ wrote to advise me that the people filling out those forms don’t know the difference between the two diagnoses and I shouldn’t worry about it, but instead should focus on what BB says and does.
He did say, via text, that I had not lost remission.
Reading his clinical notes from my last visit, though, there’s enough here to create low-grade unease.
As always, he dictates his notes in a letter addressed to all my doctors in LA on which I am copied (this is routine and a wonderful aspect of what BB does). I am reminded that my doctors in LA — SF, GD and especially RV — constitute a pretty darn good team as well, alongside BB. Anyhow…the salient points:
“I am reporting to you on nick who has IgG lamba myeloma in complete remission…” so far so good.
“Immunofixation analysis [this is sensitive blood work] suggested that the original IgG lambda band might still be present and I am going back to a March investigation when this was not hte case and I am not sure about the implications.”
No longer very good.
This is the thing that I saw in my blood more than a month ago when I was told not to worry about it. By BB, BJ and CR. BJ again said not to worry about it when I asked her before leaving the clinic the other day. It seems like I’m “not sure” if it’s a big deal or not…that’s enough to justify a bit of worry.
Then, some good news.
“The bone marrow examination dated September 4, 2013 showed no morphological evidence of myeloma…No MDS changes [this is good: don’t want MDS, which is pre-leukemia, essentially, and which Revlimid can impact]. The MRD, or minimal residual disease, test was again negative.”
Fine and dandy.
“The DWIBS [a type of MRI] study by MRI showed again sub centimeter focal lesions remaining in thoracic spine and pelvis also noted on dedicated STIR weighted image analysis [another type of MRI] of the axial skeleton showing 1 cm lesions at T2-4, T10 and T12. No focal lesions in the pelvis.”
These are a frustration, but by themselves would be no big deal. However, here’s the upshot.
“Thus, the patient appears to continue in complete or near-complete remission of IgG lambda myeloma qualifying for MRD negativity with persistent FDG non-avid focal lesions on MRI.”
Worried emphasis mine. These are not confident words, and BB chooses them carefully.
The clinical follow-through is as I have explained:
“I would like to see the patient back here in January 2014 when I would like to perform fine needle aspiration examination from at least 2 or 3 of the persistent focal lesions…and I would like to resume Zometa at 2 mg monthly.”
I have had a couple of extraordinarily helpful email exchanges with two other patients, both of whom know a lot about the disease. The first conversation helped me dig into the abnormalities in my marrow at diagnosis. The second provided the perspective of another doctor (GT) on these persistent lesions, thyroid issues, cure fractions and that immunofixation test. I’ll post about these topics over the next couple of days.
Lastly, for fellow patients or caregivers that follow along, I wanted to report that it’s okay to have moments of despair. I am generally pretty strong, being mindful that it’s easier to be strong when you are responding to therapy. I had a bit of a breakdown Saturday night when I read this letter for the first time. I felt a little like I was being told not to worry when in fact there is reason for concern. Normally BB is as straight a shooter as it comes…so I should perhaps take at face value his telling me not to worry, except that it does contradict the letter if not the spirit of this particular dictation.
Anyhow, it’s okay to be weak. Once in a while, anyhow. Back to being strong for now.