I had my consultation with my specialist today. She said she is SO HAPPY with the results!
That said, things weren’t quite as good as I thought, because I misunderstood the interaction between the “Complete Response” categorizations and the MRD test result.
So I don’t cause needless worry by burying the lede: Yes, I am in remission. And yes, I am MRD-.
However, I thought that the MRD test, being especially sensitive for the amount of myeloma in the bone marrow, conferred some kind of “super-remission” status. Turns out it’s more complicated than that. (Because: biology!)
Yes, MRD- means I have no measurable myeloma cells in my marrow. And that’s good! When I started a year ago, I apparently measured about 40% of my marrow being myeloma cells. Some people start with a lot more, and plenty do not respond as well to treatment as I have.
But. In addition to plasma cells in the marrow, there are other indicators for myeloma, because it's not just biology, it's complicated biology. (As if there's any other kind.) So MRD- means that I aced one indicator. A very important indicator, sure, but I didn’t ace all of the indicators.
Specifically, another indicator is the presence of free immunoglobulin light chains in the blood. These light chains come in two types in mammals: kappa and lambda.
(Stick with me here.)
Where there are light chains there are also, you guessed it, immunoglobulin heavy chains, which come in five classes in mammals: IgG, IgD, IgA, IgM and IgE.
Light chains and heavy chains team up to make Y-shaped immunoglobulins, of which there are thousands of types, and which are also known as antibodies -- yes, the things that fight bacteria and viruses in our system, and which we’re all counting on for eventually combatting things like SARS-CoV2.
Myeloma shows up when one of the plasma cells that produce these different kinds of antibodies starts proliferating in the marrow out of control -- that is, becomes cancerous -- and consequently not only starts taking over the bone marrow, but also overproduces the type of antibody it was designed to produce. In my case, the type being overproduced falls in the IgG and kappa classes. It can also start producing too many free light chains.
The number of free kappa and lambda light chains in the blood should not be too high, and the ratio of the two should also not be too high (or low). I have a few too many kappa light chains showing up, and the ratio is also a little higher than the normal range.
My specialist said this isn't problematic and doesn’t change my prognosis, but it does knock me out of the “stringent Complete Response” designation. But hey, if they're out of "sCR" on the menu, I’ll gladly settle for “CR” with a side order of “MRD-”...
My specialist also confirmed that my PET scan showed that places where the myeloma was previously present -- especially my neck, where the tumor was -- are now clear of myeloma. Hooray!
(If you’ve never heard of a PET scan before, you’re in good company. I hadn’t before the first of the three I’ve had now. A PET scan involves getting an injection of radioactive sugar that spreads throughout your body and gets absorbed by cancer cells, after which you get scanned by an MRI-like machine to create an image of where the cancer is. There are other things besides cancer that it can scan for, depending on the substance injected. The scan itself isn’t bad, it’s much quieter than an MRI. The daunting thing about the process, though, is you have to wait for about 45 minutes in a darkened room for the sugar to spread through your body and get absorbed, and they tell you to try not to think because that will increase radioactive blood flow to the brain and too much radioactivity near your brain isn’t good. Well! There’s certainly no better way to get someone’s thinking to calm down than to warn them that thinking is dangerous!)
As expected, my specialist recommended a pretty standard maintenance treatment of 10mg Revlimid, in a cycle of three weeks on, then one week off. I won’t have the Velcade or dexamethasone that were part of the induction chemotherapy. (And yes, that’s the dexamethasone that everyone got really concerned about Trump being hopped up on…) This will be under the care of my local clinic hematologist-oncologist.
I’ll be back at UCSF in three months, though, to start getting my childhood immunizations again.
In the meantime, I also have to follow up with my UCSF neurologist, once they have received copies of my brain MRI images, to assess what’s going on with the stroke.
And, apropos nothing else, it might amuse you to hear that my hair is, at the moment, growing back surprisingly soft and fuzzy. We'll see if that keeps up.
As always, thank you all so much for your interest and support.
Much love to you all,