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!
Thanks for this summary! I can add one data point to support these findings (so far): my mother (age 71) was diagnosed 3 months ago with MM, only because a blood test (done because she’d just had shingles, which does seem to be a significant herald or at least correlates with malignancies) showed total protein of about 6000! No clinical symptoms, mild anemia by the cell count but no fatigue. I convinced her to start curcumin right away (2g, 2xdaily is all I can get her to tolerate currently-seems to cause some mild GI distress). Her residual neuropathy from shingles has decreased and her numbers have somewhat stabilized over this 3 month span, with no treatment except curcumin. RBC, WBC and platelets are just south of “normal,” and total protein and IgG are still at those high levels, but again no outward symptoms. Not sure if the curcumin is doing anything right now as it may simply be slow progressing, but there is enough in vitro and anecdotal evidence to support its continued use.
I would love to hear what else was said at the meeting, if you want to email me.
great post – are you also posting this on the FB page? PLEASE! DO!
Thanx 4 sharing. I still can’t locate what Dr. Durie wrote re l0 grms of Curcumin.
The issue then becomes for long time smolders, then how do they treat once they become symptomatic? Of course, the longer one smolders & is asymptomatic the better off she/he is….
Thanks, Margaret! RE: short CR vs. long PR: could it be that a partial response is due to treatment knocking out a virulent subclone, while allowing less-virulent subclones to persist and continue to produce m-protein? Leaving the patient with an MGUS condition, until/unless those subclones progress too, or some remnant of the virulent type climbs out it’s dungeon and sprouts again like a weed? At my recent meeting with a “transplant doctor” (I was progressed to SMM 6 months ago but no treatment required yet), he was explaining how each plasma cell clone produces it’s particular signature of heavy chain/light chain, often not putting them together and hence free light chains….I have 3 abnormalities identified by FISH, each 7-14% of plasma cells. I suppose each of these are producing a different signature of m-protein/light chains etc? That is fascinating about treatment working faster with more aggressive cell lines – ? Somewhere I read that patients with long-lasting MGUS and SMM tend to have less aggressive MM if they progress.
Margaret – did you see that recent study of the bio-availablity of different curcumin preparations (linked on Facebook)? Do you have any idea if the D3 fits in any of those categories, or any other commercially-available preparations? It was Greek to me.
Me too about the different curcumin preparations – would love to know how they relate to actual products..
Re: Elizabeth’s post “…. recent study of the bio-availablity of different curcumin preparations (linked on Facebook)….” which FB page is this linked on? I’d like to see it, if I can find it. Thanks. -Julie Z
Julie – Hope it’s OK to show a link. I can’t remember which group the Facebook post was in, but this is the article in question: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3918227/
I think you have the plugin that automatically posts your blog posts to your fb page, right?
Soooo… I’m one of those slow growing people, I’m pretty sure. This might explain why only myeloablative chemo worked for me. Or does it?
Note for Rob:
If your mother has shingles again, try giving her Lysine tablets. Also Google “shingles lysine arginine” for an explanation of the best diet to prevent shingles.
Cheers,
Paul
Thanks Elizabeth. Now, how to link this information to the brands of cucurmin/turmeric on the market. We are meeting on Mar 11 with a complimentary/alternative medicine specialist at Mayo. Timely question. Armed with printed out information.
Margaret……as always, thank you for your wealth of information! Quick question about “protein numbers” mentioned by Gertz…… as these numbers/markers all have me confused. 🙂
On my blood work I have total protein, albumin and globulin (all within normal range). My total protein is 5.5 g/dl, which seems very low compared to the numbers in the thousands being referenced in your blog, so I’m sure I’m looking at the wrong thing. When speaking to protein numbers as markers of progression, which numbers are you referring to?
Thanks so much for your help!
Beth,
What you’re reading is a measure tested in your blood chemistry metabolic panel. That test is important; however, it doesn’t measure the protein levels that are associated with the measure of cancer involvement. The protein levels referenced in MM are determined by a serum protein electrophoresis test. This assesses the amount of abnormal monoclonal protein. A good start in understanding tests involved with MM treatment is the International Myeloma Foundation. They will send you free pamphlets explaining tests, etc.