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…
I have more things to say on this topic, based on a study that I am reading right now, but this post is long enough, I will stop here for today…
How scary was that! I would like to have numbers like his! It sounds as if his haemotologist skipped the SMM stage altogether! I can relate to his fears and concerns. Thank goodness you were able to share the much needed information and comfort he needed!
MM is such a rare cancer, I’m afraid many oncologists/haemotologists aren’t as familiar with the stages and treatments as they should be. That’s why it is so important for us to do our own homework and be proactive in our own treatment. I appreciate everything I’ve learned from reading your blog. It has brought me comfort and hope and information I’ve needed on many occasions. Knowledge is power and we need that to fight this battle. I’ll come down from my soap box now! Thanks, Donna
The amazing thing is that the haematologist considered recommending chemo based on one set of results – and the key ones (paraprotein, clonal plasma cells in the BM) were relatively low. I certainly wouldn’t agree to chemo at this stage unless I knew that the paraprotein level was rising fast – and it will take 3-6 months to find that out.
I read about a study of “long term” survivors of MM. They consider ten years the long-term point. Researchers found few commonalities. However, I was surprised to learn that a long gap between diagnosis and treatment was predominate in that group.
The long term survivors represent only ten percent of the mm those diagnosed, so there are many in the short term population who also had long interval between diagnosis and treatment too, but there was no evidence that early treatmenbt correlated to better outcomes and perhaps some evidence to the contrary.
So, unlike other cancers, you can let it run a bit amok before you whomp it. You may even help your odds. Once you start chemo, you need to stick with it. The bad news is there is still a ceiling on survival.
lots of info on mm
The problem is that myeloma is occult. By the time it can be seen (e.g., usually in the for of lytic bony lesions), it is clear that treatment should have begun earlier. Yet the disease can be diagnosed long before the point where it shows up on x-rays, ct-scans, or PET.
If the first time it is seen is on a routine CBC, it has also progressed to the point to where it should have been treated earlier. Myeloma is hidden from most of the usual screening tests as well. There’s an argument to be made for adding an immunoglobulin panel to the annual physical, except that there aren’t annual physicals any more and even then the Ig panel might miss it.
So somehow a person is diagnosed at an early stage and the question becomes, is it time to treat? Or do we watch and wait? We know that treatment earlier-than-necessary does almost as much harm, in the long run, as waiting too long. I’ve been fighting MM eleven years and there still is no good answer to that question.
But the doctor above has violated a principle that should have been drummed into him in medical school: treat the patient, not the disease.
With this comes the modern corollary for multiple myeloma: treat the patient, NOT THE LAB TEST. Ultimately, one gets a picture of the state of the disease by looking at it’s reflections in many non-routine tests. However, the obvious question that the doctor has to answer is whether or not the patient is in trouble and needs to begin therapy. Part of the answer comes from another question that can only be answered over time: is the disease progressing? Other questions have to do with the presence or absence of verifiable damage. It’s common sense, really. Is there pain? Have we looked for extramedullary plasmacytomae? Are there lytic lesions visible on flat film? Are CRAB symptoms absent?
In other words, how is the PATIENT doing? A difference of a single percentage point in a somewhat iffy measurement (drill a different place, get a different answer) is irrelevant at this point. I agree that it is mindless to decide to treat or not based upon a single number.
Good catch, good work.
I agree with all of the above especially the comments by Lonnie Nesseler. As a family doc myself I totally agree with treating the whole patient and not just a lab test. And this is especially true with myeloma which is such a protean and varied condition.”Is the disease progressing?” is certainly the key question here.
We know there are several parameters to follow and the FreeLite test for light chains will help a lot with many people. In my case I have virtually no M-spike but lots of LC because of my particular MM abnormality. However the LC analysis is relatively new and Dr Bradwell said they are still collecting data on how to use it diagnostically.
Of course you’re right that it is the TOTAL picture that really counts. For patients and doctors MM is a real challenge!