By The Numbers

Reading the different articles I find on Multiple Myeloma, it occurs to me that people discuss treatment alternatives the same way they might discuss clothing purchases from Old Navy. Patients are listening to other patients and telling their physicians they want this or that, and there are the doctors who have their own ideas on how to deal with Multiple Myeloma –without regard to type or progression. Smoldering MM is treated the same way that advanced stage 3 cases are: a course of chemo, a stem cell transplant and then maintenance doses. Whether it’s a patient urging treatment on the basis of recommendations from total strangers or a doctor following a specific game plan regardless of the circumstances, I think both of these methodologies are foolhardy.

I’ve said it here a number of times; patients are like snowflakes and fingerprints. Each one of us is different and we need our treatment to be specific to our personal need. Even with the reduced side effects of some of the newer chemotherapies, these are still toxins. As a matter of fact, I can’t bring myself to refer to them as drugs, instead I call them compounds. At the moment, the chemo employed by the medical community cannot target only cancer cells and so collateral effects are going to occur. The severity of the collateral effects determined by the drug and the patient’s reaction to it. Those of us who haunt the forums can offer our knowledge about treatments as we experienced them only, yet I see a lot of folks who are quite literally practicing medicine; telling readers what chemo they should take, what supplements should be employed, and what medications should be used to combat side effects. Some forums are possessed of certain people who are self-appointed experts who dive in to answer every question asked, often with an abundance of words, especially keywords/buzzwords of the medical profession to give themselves a greater air of authority.

It’s bad enough that a physician might make the diagnosis and reach for the Lenalidomide/Bortezomib/Dexamethasone combo treatment and start scheduling for a cell transplant. When I was taken to a civilian hospital when I have a severely toxic reaction to Doxorubicin, the staff oncologist who came to see me after I had been stabilized commented that he didn’t understand why my hematologist had chosen the Dox. “I would have put you on Thalidomide and Dexamethasone,” he said. When I explained that I had a sensitivity to corticosteroids and so Dex wasn’t an option, he replied “That’s ridiculous.”  It made me very glad he was not my oncologist because when I was given steroids they sent my blood pressure well into the realms of stroke and possible anhurism and gave me a totally erratic heartbeat. Actually, the oncologist, a hematologist actually, had prescribed the Dox for a number of reasons based on the way I was presenting my cancer and my history of drug sensitivities. My body’s reaction to Dox was way beyond what was expected, but at least it was an attempt at a solution customized to my particular case.

As it turned out, Lenalidomide and Thaidomide were “instant severe peripheral neuropathy antagonists” to me.  Later experimental treatments using them caused tremendous harm in spite of the low and trepadacious dosing I was given.  Chances are good that if I had drawn a “procedure doctor,” I wouldn’t have survived treatment. My forays into chemotherapy came pretty close to lethal as it was. That happened because the oncologists assigned to me at the time believed that some form of treatment was necessary. What we all learned over three very uncomfortable years is that it would have been better to focus on pain management and keeping a close eye on my cell counts, and treating the infections permitted by my anemia.  Especially as a non-secretor, immune to the organ damage of unwanted proteins (because I didn’t secrete them), a good case for watchful waiting and situational maintenance would have brought me to the same place I am today, however having suffered much less from the treatments born of a sense of obligation.

I am not saying that no-secretors shouldn’t take treatment. I’m also not saying that standard symptomatic MM should be treated. I am saying that I believe physicians should exert greater caution and reluctance to commence treatment rather than reacting with a cookie cutter formula. If treatment is indicated, then depending on the patient’s particular case, one or more compounds be chosen for chemotherapy. The following agents are in use at this time:

Clafen (Cyclophosphamide)
Cytoxan (Cyclophosphamide)
Doxil (Doxorubicin Hydrochloride Liposome)
Doxorubicin Hydrochloride Liposome
Dox-SL (Doxorubicin Hydrochloride Liposome)
Evacet (Doxorubicin Hydrochloride Liposome)
Kyprolis (Carfilzomib)
LipoDox (Doxorubicin Hydrochloride Liposome)
Mozobil (Plerixafor)
Neosar (Cyclophosphamide)
Pomalidomide (Pomalyst)
Revlimid (Lenalidomide)
Synovir (Thalidomide)
Thalomid (Thalidomide)
Velcade (Bortezomib)
Zoledronic Acid
Zometa (Zoledronic Acid)

Each of these might be used alone or in combinations, perhaps concurrently or consecutively. I hold the same belief in regards to stem cell transplants. I don’t think they’re for everyone with Multiple Myeloma. The SCT is about the most traumatic thing that can be done to the body, completely robbing it of its immune system. That’s especially true when you consider that the immune system is never able to re-achieve the degree of effectiveness it had prior to treatment. A sad fact is that quite a few of the mortality statistics for the cancer result from secondary infections due to therapy, both chemical and transplant. Yet some physicians launch into the same therapy for smoldering MM as they would for full symptomatic cases.

I’m not a physician and my words are not intended to be used as a guide. I write them to make people think about therapy. We patients should be participatory in our own treatment to the degree that we discuss treatment intentions with our oncologists and hematologists. They should be ready and willing to discuss whether or not treatment is a good idea and be able to debate the question from either side, pro and con. Treatment should be approached with caution and never done as a matter of course, by the numbers.