Discosis – Bran Van 3000 (feat. Big Daddy Kane and Dimitri From Paris)
Back to the hospital for my tests. The woman opposite me in the waiting room is coughing and spluttering. I’m not taking any chances, after last week, so I put my mask on. I wonder if she realises I’m protecting myself from her? All my counts are good. I don’t need any transfusions. My neutrophils are holding up ok, considering I’m no longer taking my “stimulating factor” injections to pump them up. All good. They stand me down to weekly tests (instead of biweekly). If things progress like this, I may be able to have my line (the pipes) out in a couple more weeks. Most importantly, no temperature, so I am in my own bed again, tonight. (I inevitably worry, each time I visit the hospital, that they might not let me out!)
Part of the purpose of this blog is to address frequently asked questions. There have been a few recently, as I’ve begun to recuperate. What happens next? When will I be fully recovered from myeloma? I thought it might help to explain a bit, because myeloma (quelle surprise) is a bit more complicated than that.
There are three horizons to determining if the transplant (SCT) has been successful. The first measure of success is if it hasn’t killed me. Looking good so far! People do get infections and die, even months after their SCT, though that is rare, for SCTs like mine, where you are your own donor.
Second is if it has achieved better remission than I was in before: less myeloma in my marrow, as measured through fewer light chains in my blood. We won’t really be able to tell for a few months exactly what level of myeloma grows back with my bone marrow. I expect they’ll measure my light chains monthly, for now, and I’ll have another bone marrow biopsy (yippee) around day 100.
Third is if it achieves a long remission: how long without the myeloma increasing. Myeloma is so “individual” (the politically correct term for unpredictable and poorly understood) that there’s little indication of how long the remission off my SCT will be. On “average” (median) I can expect about 4 years. Some lucky souls get 10 or more. As an absolute minimum, if it lasts more than about 18 months we might consider it worth repeating, if we needed to, whereas if it lasts less, we probably would not.
So I’ll continue to have blood tests regularly to check all’s well and to see if anything is changing in my light chains. I will almost certainly live with regular tests, and the nervous wait for the results (is my myeloma relapsing?), for the rest of my life. The chances are (highly likely), that one day, it will relapse. At that point I might need another SCT, maybe from a donor. I might need more chemo. I might need “maintenance” therapy – i.e. low dose chemo taken indefinitely. We don’t know, until it happens. Hopefully, when the time comes, it responds to treatment again.
But we’ll also be keeping a look out for other things. Myeloma can sometimes cause plasmacytomas (soft tumours of myeloma outside the bone marrow) or amyloidosis (deposits of light chain proteins in the blood and beyond). It can also progress into leukaemia. There’s no way of knowing what my “individual” myeloma will do. Let’s hope it does none of these things.
Most of those who die quickly from myeloma were diagnosed in their 70s (most myeloma is diagnosed in the over 70s). Still, we can’t hide from the fact that myeloma is pretty vicious. I have a support group of “under 50s”, whose friendship matters to me enormously. Every now and then, someone in that group dies, and I have to recite my little mantra
“That wasn’t my myeloma. It wasn’t me”.
But, equally, there are people out there who have lived a very long time with myeloma. Some docs think a subset of myeloma sufferers are already being cured. My consultant does not, but he does think we’re getting to the stage where we may have a group of people who live long enough to die of something else. Think of that as a functional cure, or myeloma as a chronic disease. And there are a lot of new drugs being developed, tipping the balance further in my favour.
So that’s how it goes from here. Never an all clear. But I intend to be fit and healthy and not thinking about myeloma. Or at least, not much.
Go Shopping – Bran Van 3000 (feat. Eek-A-Mouse)