That’s exactly what a dear friend of mine (whom I met via my blog many years ago, by the way) wrote to me after learning the news about Stefano’s uncle.
Now, as you read this post, please keep in mind that Stefano’s uncle and I are NOT related by blood. He is Italian; I am U.S. There is no Italian blood in me at all, as far as I know. So this is definitely NOT a case of familial myeloma or of familial predisposition to myeloma.
It’s just a…weird…uncanny…coincidence. I mean, of ALL the cancers…??? Puzzling.
Okay, here’s the story…or rather, the basic summary of a very long story:
Last month, while Stefano and I were still visiting my parents in the U.S., we received an email from one of Stefano’s cousins, informing us that his father (that is, Stefano’s uncle) had just been diagnosed with multiple myeloma, the light chain type. You can imagine our reaction…
After taking a look at the uncle’s results, I realized that he must be in stage III (this was later confirmed by the MM specialist, see below). His level of Bence Jones protein was very high – more than 10 grams. Other important indications: quite a bit of anemia and high-ish creatinine. And yet, incredibly, the uncle has NO SYMPTOMS. Nothing. He’s very active, never gets tired, etc.
Myeloma is a sneaky beast, isn’t it?
The uncle’s hematologist had wanted to start him immediately (in August, that is) on the VTD protocol (the acronym stands for Velcade, Thalidomide, Dexamethasone), but, after what we had both learned from my own experience back in 2005, Stefano and I thought that the uncle should get a second opinion. I also didn’t care for the fact that some of the crucial tests for myeloma were missing — skeletal survey, C-reactive protein, and Beta-2 microglobulin, to mention the main ones. So we suggested that he make an appointment with the internationally well-known and respected Italian myeloma specialist that I myself had seen in 2005, when I knew almost nothing about multiple myeloma. The uncle and his family agreed.
And so last Wednesday Stefano and I accompanied his uncle, aunt and cousin to a big city in Northern Italy, where we spent about an hour with the myeloma specialist. Stefano’s aunt told the specialist what had happened, how the uncle had begun having mild anemia in 2009 for which he was given folic acid (folic acid? Interesting…must check that out…).
She said that in June 2014 the thing sort of “exploded” by pure chance, when the uncle went to the dentist for an unrelated problem, and the dentist recommended that he have some blood work done. That is when the Bence Jones protein problem was discovered, and the uncle was sent to a hematologist. I don’t know why it then took more than a month for the hematologist to come up with the myeloma diagnosis, but…whatever.
Well, the Northern Italian specialist confirmed my suspicion — that the uncle was in stage III (in spite of the missing pieces of the puzzle that I mentioned above). And he said that VTD was the correct treatment…to be followed by an autologous stem cell transplant.
Stefano’s aunt said that her husband was already taking curcumin and asked if he could continue doing so during the VTD treatment. The specialist didn’t roll his eyes or ask what the heck curcumin was (which indicates that this isn’t the first time he’s heard about curcumin), but merely indicated that it wouldn’t hurt, although it probably wouldn’t help, either. Bah humbug. But I remained silent…no point in getting involved in a useless debate…
After the aunt had run out of questions, I piped up and asked the specialist something (I forget what, exactly)…something that evidently surprised him enough to ask me: “you’re an M.D., aren’t you?”
An M.D.? Moi?
No, I’m not kidding (and I have witnesses, too). 😉
I laughed and said no, I wasn’t, adding that he probably didn’t remember me, but that I had seen him as a patient in 2005, that I was still smoldering, hadn’t had any conventional treatments, etc. I told him that I have been taking curcumin since January 2006 and was doing very well, as he could see. And that I had a blog detailing my own personal experience with curcumin, mainly…
He and I then had an exchange about possible alternative therapies and other drugs and whatnot…I asked a bunch of questions, and the aunt asked some, too. In the end, though, it all came back to the old VTD treatment. This sort of induction therapy leads to an autologous stem cell transplant. The uncle has almost reached the age where he won’t be eligible for a transplant…so we’ll have to see what happens and how he is doing 4 months from now.
I’m very hopeful, I must say. The uncle is in good physical and mental shape. Most importantly, he will be taking curcumin.
Besides, as the MM specialist told the uncle at one point: “you’re more likely to die of a heart attack than of myeloma.”