“If progression is slow, it’s harder to treat with chemo…”

This morning, after doing some work (as usual), I finally got around to going through the copious notes I took during the patient-doctor meeting with Dr. Morie Gertz (Mayo Clinic in Minnesota) that took place last month, on January 18, right here in Florence…well, just outside Florence, to be exact.

In this post I’m going to focus on the new/most interesting bits of his excellent presentation, which compares myeloma to a garden that is more or less choked with weeds. I’ve heard, and written about, the presentation before (do a search for “Morie Gertz” on my website, using my handy “Search” box, = top, right-hand side). I still took notes on it, since I find it fascinating, so if you have any questions or comments, please get in touch with me, and I can check my notes for you.

Interesting excerpt: “There are no absolutes in this disease, but doctors agree that if the percentage of plasma cells in the bone marrow is above 10%, it’s myeloma.” The part of this sentence that struck me is that there are “no absolutes.” No absolutes…

A bit further on he added that the average patient at diagnosis has 30% plasma cells in the bone marrow. More plasma cells = fewer red blood cells, as we know. And anemia, which gives us fatigue and shortness of breath, is a “cardinal feature of myeloma.” It occurs, he said, in 70% of MM patients.

75% of MM patients experience bone pain/fractures…”All bones are at risk in this disease.”

But how does a doctor figure out that someone–without any obvious symptoms such as the above-mentioned ones–has myeloma? The first signal, he said, is increased protein in the blood. Total protein is mostly the sum of albumin and globulin, he said. A normal person has more albumin than globulin…say, 40 and 30, respectively. But if the numbers are 35 and 50, well, that’s “abnormal.” Total protein is a “useful marker of disease activity,” he added.

Interesting: he said that the “quantity of protein” is different from person to person. Patients ask each another: “What’s your protein level?” But, Dr. Gertz stated, that means absolutely nothing: “you can’t compare across patients. Some make 400, and they’re having terrible problems. Others have 5500 and are fine,” he said. (And I add: no absolutes, right?)

Smoldering myeloma should NOT BE TREATED. I definitely wrote THAT down! :)

A few of the patients at the meeting had had allogeneic stem cell transplants, so he talked about allos a bit. Again, if you’re interested in this topic, write to me, and I’ll try to transcribe that part of my notes for you.

Note: he confirmed what I’ve read about our immune system not being very good at recognizing and exterminating MM cells. Big problem.

He also spoke about the post stem cell transplant issue of complete response (CR), partial response (PR), very good partial response (VGPR), etc. Patients always want a CR, of course. He noted, however, that some patients might not achieve a CR but have a protein level that remains the same for 10 years, whereas others might have a CR, but only for one year. So, he asked us, in your opinion is it better to have a short-lived CR or a much longer-lived PR? You can imagine our response…! Again, no absolutes…

Staging (= Stage I, II, III): he said that this is useful mainly for DOCTORS, not really for us patients. It enables doctors to talk about results and clinical trials, mostly. His example: let’s say there are two doctors, one from Rome, the other from Torino, who are comparing notes on their clinical trials (same drugs, of course). The trial in Torino: 80% of its MM patients are in Stage I; 10% in Stage II, and 10% in Stage III. The trial in Rome: 10% in Stage I, 10% in Stage II, and 80% in Stage III. The exact opposite, basically. No matter WHAT you do, Dr. Gertz said, the group in Torino will always do better. And that is why staging is important…

But now we get to what for me was THE MOST INTERESTING THING HE SAID…and I quote (yep, all modesty aside, I’m very good at taking notes…All that training, especially in grad school, has paid off; I guess! ;-) ): “If you’ve had MGUS or SMM for a long time, and progression is slow, it’s harder to treat your myeloma with chemo because of the slow-growing cells.” (Chemo targets fast-dividing cells.)

I couldn’t help it…I blurted out the first thing that popped into my head: “Well, that’s the best argument AGAINST early intervention…” I don’t think he replied…

And I think I’m right…

Just my opinion, as usual!