I’ve thought for some time about how to “come out” with this information. I haven’t wanted anything to impact the release of the new Redemption CD, or to draw attention away from that, so I’ve kept very quiet about this until now, only telling a few people. But as I will be at Progpower, and people may notice things like the fact that I’m bald, I figured I might as well open up about it now so as to avoid speculation that might go on were I not to say something.
Last November I was diagnosed out of nowhere with something called Multiple Myeloma, a particularly bad form of blood cancer which is generally considered incurable and which has a five-year survival rate of 34%. Myelo = immune system prefix, oma = something that will kill you. Tumors happen throughout the body’s bone marrow rather than in one localized spot, hence Multiple Myeloma.
I am going to beat this disease. I also have some strong feelings about healthcare which may or may not be popular here. You can imagine I don’t particularly care what others think on this topic any longer – I’ve lived in a very extreme corner of the healthcare universe undergoing treatment that was totally unimaginable to me ten months ago. However I've decided to (almost entirely) depoliticize this post, even though there are many points to be made. I'm sure other threads will emerge over time on this board and I'll have the chance to make my points there if need be.
Myeloma kills by having certain types of blood cells divide and multiply out of control, crowding out the proper blood cells and thus destroying the body’s ability to fight infection and carry oxygen around the body. It also destroys bone, and heightened calcium in the blood interferes with the kidneys and can lead to renal failure.
Nobody knows how it occurs (it’s not from smoking, for example). But it’s not a disease that one wants. If one gets cancer, it is not even a type of cancer that one wants (though I would put it above pancreatic cancer).
I was completely asymptomatic (other than tiredness, which as it turns out was early stage anemia) when I was diagnosed. I went in to have my blood checked as routine followup for the Lipitor that I was on for cholesterol. Had it not been for the extremely talented primary care physician that I have, this would have gone undetected for several more months, which would have had disastrous implications for my ability to beat this disease. The likelihood of a nurse in a lab – who would have been qualified to draw blood and run the liver tests that are standard for Lipitor and other statins, but who would not have thought to look at stuff like elevated protein – catching this is virtually nil. It took a doctor, and a good one at that, to find this and thank God he did.
So anyhow, my primary care doctor found the elevated protein. It was retested and confirmed. I was then sent to a hematologist. Long story short, a few days later I had my first bone marrow biopsy and a very bad diagnosis was delivered.
Since the medical community generally does not believe this is a curable condition, there is no universally recommended course of therapy. Rather, there is a spectrum of approaches. It would not be too much of a stretch to say that no two hematologists / oncologists agree on exactly what to do.
At the least aggressive end of the spectrum, some specialists believe the best course of action is to control the disease with drugs. When the disease no longer responds to one set of drugs, other drugs are then used. The goal is to buy time, I suppose, for new therapies to emerge since nobody believes this treatment modality will meaningfully prolong life. And to give you an idea of how bad the disease is, one of the earliest forms of drugs in this line of therapy is ARSENIC.
The “mainline” therapeutic route, if in fact there is one, begins with using a combination of a two or three drugs to suppress the cancer as much as possible. There are several combinations used, but the most common includes thalidomide (yes, THAT thalidomide) and high doses of a horrible corticosteroid called dexamethasone (this is not the type of steroid that builds muscle – rather, it destroys it, and has many other terrible side effects), and in recent years something called Velcade which has made a significant difference in treatment (survival rates used to be even more dire). After the cancer has been suppressed, the patient then undergoes what is called a stem cell transplant (there are several types, the least risky of which is called an autologous transplant, which means you are getting your own cells back – the mortality rate from this is only about 1%, versus around 25-30% from getting a transplant from a matched donor). In this procedure, one receives a bunch of painful injections to force immature blood stem cells (which are too young to have become cancerous) out from the bone marrow and into the bloodstream. One’s blood is then circulated through a machine to separate these immature cells from the rest of the blood. The immature cells are stored. One is then given a massive megadose (100X a standard dose) of a chemo drug called Melphalan, which is literally liquefied mustard gas (most chemo is chemically very similar to mustard gas, I have learned). This kills 99.99% of the cancer cells, and also destroys the blood supply – it destroys all white cells, (they fight infection), all platelets (they clot the blood) and most red cells. If this were allowed to happen without countermeasures, the patient would die in short order. Thus, the day after the chemo is administered (give or take), the patient receives an infusion of his/her stem cells, which over the course of a couple of weeks “engraft” in the bone marrow and begin to create healthy blood. In the interim, the patient has no immune system and is susceptible to infection, so injections are received to boost white cell production and massive IV antibiotics are prepared in case of infection. Blood transfusions are required to keep red cell counts in an acceptable range. Platelet transfusions are required in order to allow blood to clot, otherwise bleeding out (or massive internal bleeding in the case of a simple bruise) become serious concerns.
If this sounds like fun, it is not. More on that in a moment. But also bear in mind, the physicians that recommend this course of action readily admit it will not cure the disease, and more than a few do not even believe the transplant itself prolongs life. They all say that remission is temporary – though in some cases it can last for years – and that recurrence is a given. Some say the only reason to have the transplant is to be free of going to the doctor’s office for the duration of remission.
At the most aggressive end of the therapy spectrum is the belief that newly diagnosed patients whose disease has not built up drug resistance can have a good chance of being cured if they undergo unconventionally extensive amounts of chemotherapy plus other drugs to suppress the cancer, have not one but TWO of these stem cell transplants several weeks apart, with additional drugs after each of the transplants, follow this all up with more chemotherapy, and then go on three years of what is called “maintenance” therapy which consists of steroids, a cousin of thalidomide called Revlimid, and Velcade. Essentially this is a carpet-bombing / kitchen soup approach. Instead of using all drugs in sequence, everything that is known to work is thrown at the cancer all at once. This overkill approach, proponents believe, is strong enough to kill every cancer cell in your body, and then to keep the body as inhospitable as possible for Myeloma cells until there is no chance of recurrence.
There is no consensus viewpoint on how to be treated. Most of the medical community doesn't believe the aggressive approach works -- in part because of the severity of the treatment and in part because the results have only been achieved at one place, in Little Rock, Arkansas (more on this in a bit) and the man behind the program there refuses to put his patients into a double-blind study to compare his results versus other therapies.
Because of my early diagnosis, I had a couple of months to research the path I wanted to take. Based on talking with about half the leading specialists in the country representing the full spectrum of treatment possibilities, I decided to take the most aggressive track possible. In February, my wife and I basically moved to Little Rock, Arkansas to be treated by Dr. Bart Barlogie, who is the creator of the super-aggressive treatment protocol known as “Total Therapy” for Myeloma. Why Little Rock, of all places, you ask? Good question. I had the same one. Turns out Sam Walton of Wal Mart fame died of Myeloma. He donated a lot of money to the University there to start a center specifically for this disease and hired Bart, the top Myeloma specialist at MD Anderson in Houston (the leading cancer center in the country) to set up shop there, giving him free reign.
Total Therapy consists of initial treatment with five kinds of very nasty chemotherapy, plus thalidomide and the steroid I wrote about earlier, plus Velcade. Once this is completed, then two consecutive high-dose chemo stem cell transplants are performed, with a break after each one during which the patient is on thalidomide and the steroid. Then the same up-front cocktail of chemo and other medicines is given again. Then the patient is put on maintenance therapy for three years. Importantly, Total Therapy is predicated on the disease not being prepared for any of these drugs – that is, drug-resistant disease doesn’t respond nearly as well. Bart’s data shows that in the “low risk” subset of Myeloma patients (about 85% of the patient population, and I am fortunately included in that group although I have a bad “subtype” of the disease) he can achieve a cure rate in excess of 80%, provided one has not been treated for the disease previously. He is steadfastly opposed to a double-blind test, and so many in the medical community do not believe his data. I am, of course, a believer, having studied it extensively and also having questioned him about accusations of selection bias, his refusal to do the double-blind test, etc. and having received satisfactory answers.
My disease progressed rapidly, as my original hematologist expected it would given my age (Myeloma is rare in young people – the median age at diagnosis is, I believe, 71). If you get it when you’re young, it means your immune system is not good at getting rid of it and it’s likely to progress rapidly. Older people can sometimes live with it for as long as several years before it advances beyond what is called the “smoldering” stage.
By March, the disease was well on its way to destroying my bones. I had early signs of renal failure. I had five major lesions in my bones and over 100 sites of early activity. I went into the hospital one night for extraordinary abdominal pain from all the therapy I was on, and an MRI revealed four newly broken vertebrae in my back. By the time my broken back was identified as such, the initial course of chemotherapy had acted to destroy my immune system so no surgery was possible until the immune system came back as any infection from surgery could kill me. I was thus hospitalized for basically the month of March with four broken vertebrae, bilateral pneumonia and a collapsed lung, the whole time on 24/7 high dose Dilaudid (very potent synthetic morphine). This was not a barrel of laughs.
Fortunately, I had the early diagnosis. Otherwise I'd have shown up in the ER one day in Los Angeles with no idea what caused it but with a broken back, and whomever the on-staff hematologist was would immediately have started me on whatever protocol he or she thought was best since the Myeloma was, by then, stage 2 if not stage 3 and immediate treatment would have been called for. By the time I learned about the aggressive option, it would have been too late to pursue it since my disease would have already been exposed to some of the drugs.
After March, things got a little better. I eventually had surgery on the broken vertebrae and was released from the hospital. I received my first stem cell transplant in May, and my second in June. After each of these, I was on more thalidomide and dex, both of which I really hate. I finished my last treatment of chemo in mid July and after my immune system recovered, I was discharged from Little Rock on July 31st and returned to Los Angeles. My bloodwork and bone marrow analysis (by the way, bone marrow biopsies are not a lot of fun either) shows no evidence of the disease. I have a follow-up visit to Little Rock immediately after Progpower, which will hopefully confirm that I am in complete remission. The trick, of course, is staying that way – which maintenance therapy will hopefully take care of. If I make it six years without recurrence, the data shows I am most likely cured. I believe I will get there.
A very few people here have known about this, and I’d like to thank them for their discretion and, more importantly, for their support. You know who you are, and you are dear friends to me.
I am going to do my best to be scarce at Progpower. My immune system is still recovering and I cannot afford the “Progpower flu” whatsoever. I was actually not going to go but circumstances changed a couple of weeks ago for reasons that I don’t want to discuss here. If you do see me, I trust you will understand that I’m going to try to avoid handshakes and I’ll be bathing in antimicrobial handwash, basically.
So…that’s about it, I suppose. I’m still standing, and I’m not going to crawl.