With my next post, I had hoped to simply catch up on some interesting things that I am late to report — like the CureTalk conversation, etc.
But this has been preempted.
I remain in complete remission, but the MRI has not changed. This was, at first, just frustrating…because I know I don’t want to stop medicine until those remaining pits have resolved.
Unfortunately, there’s more to it. BB was concerned that they haven’t gone away. Not only out of principle, but also because they have learned more about genes in the last four years and one of the genes that was expressed in my myeloma is something called MIC and that can cause “sudden and unexpected loss of remission.” This is what happened to my friend BB (not the doctor, but with whom I had dinner the other night here) and that BB was low-risk, and suddenly lost remission, and now has high risk disease and a pretty grim diagnosis, though he is fighting and there is always hope.
My disease has the same propensity to do that.
Now the MRI didn’t change — there are still five residual “small” lesions in the spine. They are too small to be aspirated. But the former region in my hip — which was fully resolved but which Bart says indicates some potentially undesirable marrow characteristics — is large enough for them to stick a needle in.
So I agreed, provided they are knocking me out. I discussed with BB (the patient, not the doctor ) that FNA doesn’t stand for “fine needle aspiration” but rather for “keep that F*@#ing Needle Away from me!” :)
Regardless of outcome, I will continue on Velcade at a higher dose than before. He is okay with me dropping Revlimid because he is concerned about secondary cancers at this point, particularly given my squamous cell carcinoma and the preliminary myelodysplastic cells in my marrow from last time. He is okay with me dropping dex so long as I can tolerate the Velcade. But the Velcade continues. I can get it subcutaneously, so that’s something, I suppose.
If the FNA shows something, then I may be looking at another round of the original chemo — VTD-PACE. Not something I’m looking forward to, but if it’s necessary, I’ll do it, I guess.
He said he is now taking me off protocol and “going out on a limb” but “we’re in this together.”
That’s not what I wanted to hear. I wanted to hear “the myeloma is gone and will not be coming back.”
I have so many concerns, I don’t know where to begin, really…among them, will I ever be confident that this is really gone forever? I suppose if all those lesions resolve and the marrow returns to normal, I can be confident.
I’ll need to come back here for more testing, almost certainly, at some point in the next few weeks.
My thoughts are scattered…apologies for the incoherent post. Pretty shaken right now.