December 17 2009 post. If you had a cavity, would you let your dentist pull out all your teeth? Nope, didn’t think so. Well, today I am going to tell an incredible (from my viewpoint) story, which might have had a different development, had I perhaps not intervened…sometimes I just cannot remain silent, even though I do try NOT to give any advice to my blog readers, I really do…but this was too much…

An upset and understandably very scared MGUS blog reader wrote to me on Monday night (I read the message on Tuesday morning before leaving for work) about his most recent haematologist appointment. For obvious reasons (of privacy), I cannot and will not provide too many details, including revealing my blog reader’s country (not Italy, that’s all I will say)…

Based on what he told me, it seems clear that my blog reader doesn’t have any CRAB symptoms. His protein and calcium levels are low, and he reports “no significant organ damage.” Ah, wait, let me make a slight amendment: he doesn’t have any “CRA” symptoms. As for the “B” in CRAB, the only test result that wasn’t ready on Monday was the skeletal survey, which should arrive within a few days, though. So we don’t know about the “B” yet.

He did receive some bad news, though. His bone marrow biopsy, or BMB, revealed 10% clonal plasma cells. And here is the shocker (again, from my point of view): his haematologist told him that he has now reached the boundary between MGUS and MM. If his BMB had been 11%, she said, he would have had to have started chemo immediately.

When I finished reading my blog reader’s e-mail, my first thought was that doctors should really undergo some serious sensitivity training courses. This particular haematologist instead must have attended the course titled “scare your patient out of his/her wits for no good reason.” I mean, here you have no idea if he has any bone lesions AND his bone marrow biopsy is less than 11% bad cells AND the rest of his tests are fine…yet you tell him that he might have to start chemotherapy? Where’s your common sense, for Pete’s sake? Besides, the implications of what she told him are absurd: if you have 10% cancer cells in your bone marrow, sit back and relax, you are fine. But if that number is 11%, then you have been plunged into the middle of a danger zone and have to undergo immediate treatment. A ONE PERCENT change in only ONE myeloma marker? Does that make any sense at all?

No, it doesn’t. And I have proof.

This haematologist must not be familiar with the 2002 report of the International Myeloma Working Group, composed of illustrious myeloma experts from all over the world. (see the list on page 756: http://tinyurl.com/yc5ucmw.) My blog reader’s story should remind us to have a copy of this report at our fingertips. Always. Okay, let’s have a quick look…

• The most important characteristics of MGUS: M-protein < 30 grams/liter; < 10% bone marrow clonal plasma cells and no end organ damage (including bone lesions).
• SMM, or smoldering myeloma: M-protein > or equal to 30 g/l; > or equal to 10% bone marrow clonal plasma cells and no end organ damage (ditto).
• As for active MM: high calcium and creatinine levels (the C and R in CRAB), anemia (the A in CRAB), bone lesions (the B in CRAB), in addition to other things, such as symptomatic hyperviscosity and recurrent bacterial infections. Or plasmacytomas. See Tables II and V in the report for more details.

Now, concerning Table V, you will notice that there are no numbers for the amount of M-protein in the blood or urine. The authors explain that Approximately 40% of patients with symptomatic multiple myeloma have an M-protein less than 30 g/l. However, 97% of patients with multiple myeloma will have an M-protein in the serum or in the urine. No minimal level of clonal bone marrow plasma cells was designated because 5% of patients with symptomatic myeloma have fewer than 10% plasma cells in the bone marrow. The most critical criterion for symptomatic or treatable disease is the evidence of organ or tissue impairment (end organ damage) manifested by anaemia, hypercalcaemia, lytic bone lesions, renal insufficiency, hyperviscosity, amyloidosis or recurrent infections.

So what is important for symptomatic myeloma are CRAB symptoms…

This excerpt is important: Definitions of multiple myeloma and criteria for treatment adopted by study groups in various countries have differed. Agreement to adopt a uniform approach would be advantageous in collating data internationally and carrying out treatment overviews and meta-analyses. An agreed-upon definition of symptomatic multiple myeloma requiring treatment would also remove the need for the use of older staging systems. (For more, see page 754.)

Even so, though, let’s never forget or let our doctors forget (!) that we, patients, are INDIVIDUALS, not numbers or statistics.

I told my blog reader to ask for at least one other medical opinion, if not two. I gave him the names of a few of the very kind and knowledgeable multiple myeloma experts that I contacted in 2005 (and whose names are on the Int Myeloma Working Group report, incidentally), when my progression toward active myeloma seemed inevitable and I began to get scared. Contacting those specialists was one of the best things I have ever done…