Round Two of Multiple Myeloma cancer chemotherapy is underway.

OK, I admit that, in my last blog, Drug side effects and horror film characters: Turning normal people into crazy serial killers, I didn’t exactly let the piece go where it was initially set out to go. I went off on a tangent. 

I had initially intended to provide a report summarizing my current status in Round Two of my chemo, but I ended up allowing myself to indulge in telling you a story that recalled the time when I was refreshing my memory regarding the potential side effects of the drugs to which I was about to be exposed.

Don’t shoot me for going off on my occasional flights of fancy! 

I’ll re-focus my thoughts now, and I will concentrate on going more directly from Point A to Point B without any detours. However, I’m not promising that I will never go off a tangent again: consider this a one-time deal!

Round Two of my battle with cancer: Multiple Myeloma chemotherapy resumed February 2014.

As I started out saying, I am now in my fourth cycle of active chemo, with each cycle lasting one month and consisting of four weekly visits to the infusion center at Roswell Park Cancer Institute in Buffalo, NY to get my treatment. Oncologists refer to the phases of treatment that one gets in a battle against cancer in fighting terms, so I am now in Round Two of my adventure with this blood cancer called Multiple Myeloma. So far, things seem to be going well.

Dr. Hong Liu, the doctor who had been supervising my care following the stem-cell transplant I got at Roswell in August 2012, has been transferred back to the Bone Marrow Transplant. I have been assigned to the care of a new doctor, Dr. Kelvin Lee, a specialist in the field of Multiple Myeloma. On the research side, as an immunologist, Dr. Lee is also supervising the development of a Multiple Myeloma vaccine at Roswell. In early May 2014, I with Dr. Lee met for the first time to go over my status and to discuss the overall strategy for my treatment plan.

Original cancer chemotherapy regimen of Velcade, Cytoxan, and Dexamethasone repeated.

Although I am being given exactly the same triple cocktail V-C-D treatment regimen, consisting of Velcade, Cytoxan, and Dexamethasone (i.e., Bortezomib, Cyclophosphamide, and Decadron) that I got in my First Round of chemo two years ago when I was first diagnosed at Stage 3-B of this plasma cell blood cancer, my body is responding well to the drugs. 

Since I am responding well to the same triple chemo cocktail which I originally received throughout 2012 when I was first diagnosed and treated at the Erie County Medical Center (ECMC), the strategy is to keep on using this regimen for the next 2 to 4 monthly cycles to see how things go. It is a pragmatic approach based primarily on the evidence of my lab report findings, yet supplemented, I believe, with the fact that I am tolerating the chemo quite well, with the only untoward side-effect perhaps being the energy boost and insomnia I get from the steroid Dexamethasone, which can keep me up for 48 to 60 hours at a shot.

Which Multiple Myeloma “tribes” are fighting for dominance in my body?

Chemotherapy is not a game of chance. It’s a game of strategy and will. Cancer cells tend to be smart. They evolve. They adapt. They remember what drugs were used to slap them around, and they find ways to resist being killed or neutralized by the drugs used in chemotherapy. 

While it is not usual, says Dr. Lee, for someone to respond so well to the same chemo regimen in Round 2 of a treatment plan as they did in Round 1, it is possible to reproduce the initial success, because everyone reacts differently to the drugs. Besides that, he said there are actually various types of Multiple Myeloma cancer cells, with each type displaying different kinds of behavior, just like people. 

There is “old” myeloma, which behaves slowly and indolently, like old people who can barely get across the room before lunch without a walker; and there is “new” myeloma, which behaves much more aggressively, like frisky gazelles sprinting across a savanna towards a fresh patch of grass.

Within these old and new types of myeloma cells, you can also find different families, or tribes, each one competing against each other, as well as against all the other elements of my immune system, to become the dominant force in my bone marrow and in my blood stream.

These fighting cousins of the Multiple Myeloma family are characterized not only by their various degrees of aggressiveness, but also in their ability to resist the effects of the pharmaceuticals tossed in their face. The drugs may have a great impact on some of the myeloma tribes, but a lesser impact on others.  Only time can tell.

Did my Stem-Cell Transplant “reset” the malignant plasma cells in my body? 

While there is no definitive, scientific evidence to indicate what might allow for my current success in being able to thus far get a good response as well as to tolerate the chemo, Dr. Lee mentioned that some people in his line of work theorize that some sort of “reset” may have occurred within the body when I got my stem-cell transplant.

This implies that only some variations of Multiple Myeloma tribes got wiped out, while others got severely damaged but are making their way back up the food chain. As plasma cells, myeloma cells are actually part of the immune system gone bad, and their bad re-wiring—in my poor layman’s understanding of their mechanism—is driving them to try beat the hell out of the good guys in my immune system, you know, those red blood cells, those white blood cells, those platelets and all their well-intentioned friends who are dedicated to sustaining Life. 

But these maladapted, malformed, misbehaving myeloma cells are different: something in them drives them to take control. They don’t want to play nice with all their other cousins in the immune system; these guys are rebels. They need be the top dogs in the system. The problem, of course, is that, in their greed for power, these cancer cells foolishly and irrationally end up killing the host which has to foot the bill for their ravenous feasting in my bone marrow. 

When you come right down to it, cancer is irrational: it is a self-destructive process that makes no sense. 

Dr. Lee does not necessarily subscribe to that “reset” theory. He doesn’t know why, or how, it is possible that I am responding so well to the same chemotherapeutic regimen in Round 2 as I did in Round. But he does know a good thing when he sees it, so his approach seems to be “Let’s-continue-doing-what-works” and “Let’s-wait-and-see” what happens over the next few months. Let’s see which miscreant myeloma tribe eventually turns up so that we really get a good idea of what we’re dealing with.

Right now, many questions remain unanswered. Will this regimen of chemo send me into complete, or near-complete remission, as is hoped? Or, will a really mean faction of ugly, red-necked myeloma cells emerge from their inbred pack of hostile cousins to cause havoc in my bone marrow, in my skeletal structure, in my kidneys, and anywhere else in my body such that they attract a lot of negative attention and compel Dr. Lee to make changes in the course of my treatment?  Those are the questions for which Dr. Lee is taking a wait-and-see attitude before making any alterations.

Trend Line of M-Protein (M-spike) markers for Multiple Myeloma shows good response to chemo 

So far, the  M-protein (M-spike) marker in the blood, which indicates the degree, or amount, of the Multiple Myeloma threatening my life, has been decreasing over these last three months’ cycles since I resumed active, induction chemo following the failure by the end of 2013 of the maintenance chemo with low dose Revlimid to do the job of suppressing the myeloma deep enough well enough.

Since climbing to 1.20 in February 2014, at which point I resumed active chemo with Velcade, Cytoxan, and Dexamethasone, the most recent report indicates that my M-spike is now at 0.32 Grams/decaLiter. Following the commencement of chemo, lab reports show that my M-spike trend-line, which is the key marker to determine the presence of Multiple Myeloma, has progressed in a downward trend, like this:

• 1.20 Grams/decaLiter at 2/11/2014
• 0.70 Grams/decaLiter at 3/10/2014
• 0.46  Grams/decaLiter at 4/7/2014
• 0.32 Grams/decaLiter at 5/8/2014

While these measurements are an indication of the degree, or depth, of the cancer burden in my body, they do not also indicate the behavior of these mischief-makers. Dr. Lee says that it is too soon to come to any conclusion about their personalities. We cannot yet tell if the tribes fighting for control are young or old, aggressive or reserved, smart or stupid. 

Obviously, we’d like them to be so old that they can barely move; so shy that they’ll never ask anyone to dance; and so stupid that they’ll never be able to outwit the arsenal of chemotherapeutic agents that is available to throw at them. So, the present strategy is to continue with what works, until it doesn’t. At least for 2 to 4 more cycles. We will evaluate the strategy, over time, as the circumstances dictate.

Bowling average trend line indicates wellness and good quality of life

Besides the scientific markers which the doctors use to evaluate and indicate the status of my health, there are  some basic, personal markers which I use to determine how I’m doing. Fortunately, all those signs are good, too. I feel good. My energy level is up. My outlook is optimistic. My will is strong. My attitude is positive. I have been able to concentrate my mind on writing my eBook and on developing the ThenCameCancer.com website for its presentation and distribution. And I can bowl!

I had joined a four-man team bowling league back in September 2013, and I had a very good time socializing each week as I managed to end up with a 207 average for the season. In the first half of the winter season, I averaged 201; in the second half I averaged 213. Not too bad, all things considering!

As anyone with any sophisticated understanding of the game knows, averages in recreational bowling leagues are contingent upon how easy or how hard the oil pattern is on the lanes we bowl on. I bowled on a “house shot,” which is an oil pattern at the easier end of the spectrum, causing averages to be inflated when compared to the much tougher, professional “sport” shots. Nonetheless, I am still quite pleased with myself to have been able to bowl at all, let alone do decently well this past season. Not too long ago, I was not even able to pick up a bowling ball, let alone swing one at my side and roll it accurately down a lane. Two years ago, when I was first diagnosed with Multiple Myeloma, I could barely walk, and I was in a lot of pain. The concept of being able to bowl again was nothing but a dream, a distant illusion, a mirage. 

Bought new bowling balls and joining a competitive summer league featuring “sport” shot conditions.

Well, it took about a year-and-a-half of slowly rebuilding my strength, and then testing myself with a lightweight bowling ball—only 11 pounds—before I finally got to the point where I could again throw a bowling ball well again. I can no longer use the 16-pound bowling balls I used to hurl down the lane, so I have settled on 14-pound balls. At first, a friend donated a three of his older 14-pound balls to get my through the season. But in the final month, I splurged and bought three (3) balls of my own. 

Now, to keep up the momentum, I plan to bowl in a summer “shootout” league. This weekly shootout league will be no easy, high-scoring competition. Quite the opposite. Every two weeks, the lanes will be oiled with a different “sport” shot. Sport shots are tough; scores will be low. No matter. What counts is that I am presently strong enough to bowl, so I have decided to do things that I like to do, things which make me happy. 

Is cancer remission possible? Who knows? Why wait to find out? Carpe diem.

Now, if my blood counts can get even better over the next few months to push the cancer back into remission, that would be even better. Life being much shorter than anyone can imagine, I do not need to wait for those results in order to take advantage of where I am at right now. So, I will bowl. And I will finish my website. And I will move on to another project to keep my mind as active as my body wants it to be, and vice versa.

Except, of course, when they fight each other about who’s to blame for either of them getting enough sleep. To get the whole story on that, you’ll have to read my blog piece: Body to Brain: Shut Up and Let’s Go To Sleep!

Drug side effects and horror film characters: Turning normal people into crazy serial killers.

Cancer won’t go away nicely, so I’m back on full chemo

I am now in my fourth month of active chemo in Round Two of my adventure with this blood cancer called Multiple Myeloma. So far, things seem to be going well.

Although I am being given exactly the same triple cocktail regimen—namely Velcade, Cytoxan, and Dexamethasone (i.e., Bortezomib, Cyclophosphamide, and Decadron)—that I got in my First Round of chemo two years ago when I was first diagnosed at Stage 3-B of this plasma cell blood cancer, my body is responding well to the drugs. 

Side effects are minimal, but I still ride the Dexamethasone roller coaster

Just as significantly, my body is also tolerating the side effects of the chemo quite well—even better than the first time around. I am not experiencing any of the neuropathy, or tingling in my fingers, which occurred the first time around. Food tastes great: there are no more weird, metallic flavors messing up my taste buds. And the roller coaster rides of weekly energy highs and fatigue lows that I rode throughout the entire course of Round One chemo is significantly mitigated in this round, although, as another blog testifies, I still do get a hell of an energy kick from the steroid Dexamethasone.

In fact, soon after getting my doses of Dexamethasone—it is spread out evenly over two consecutive days—I find myself physically and intellectually boosted into a realm of high energy that can keep me awake and alert for two or three days at a shot. When the effects of the drug wear off, some fatigue does set in, but nothing like the order of magnitude which turned me into a couch potato for the second half of each weekly administration in Round One. 

Forever chasing the goddess of sleep

I get my sleep OK, not in any normal diurnal fashion, but piecemeal, throughout the week, in chunks of abnormal time that could involve deep, four-hour naps at any time of the day or night in between bursts of activity. As I noticed the first time around, when I find that my eyes droop uncontrollably, or when I can no longer concentrate on completing the tasks I am working on at my computer, or when the movie I was watching ends and I can’t remember seeing how it all turned out, then I know that my brain is exhausted and I have to crawl into bed to get some long-overdue sleep. 

As far as I am concerned, though, having insomnia or a disrupted sleep pattern is a relatively small price to pay to get the much larger benefit of knocking down the cancer burden in my body. I’d rather suffer the loss of Small Sleep due to the steroid’s effects on my mind and body than be relegated to the Big Sleep too soon due to the effects of the cancer on my body. So, for my money, the Dexamethasone roller coaster is still the most exciting ride you can climb aboard if you happen to have the ticket of admission that all Multiple Myeloma patients are given upon entering the chemotherapy amusement park.

How long before I become psychotic?

Of course, all drugs have their long-term side effects. One of the long-term liabilities of taking Dexamethasone, as I gathered from an app called Medscape, which I downloaded to my iPad, is psychosis. The drug can literally drive you crazy! 

I remember coming across that rather unsettling information back in the first week of Round Two of my treatment, when I was in the infusion center at the Roswell Park Cancer Institute. I wanted to refresh my memory regarding all the side effects that I might be heir to as a result of resuming a full course of chemo. 

Since lab results at the end of 2013 were indicating that the cancer was creeping back into my bone marrow and blood stream to make life difficult for me, my doctor reached the conclusion that the maintenance regimen of Revlimid had apparently failed to give me the same duration of benefits that other stem-cell transplant patients were receiving. Statistically speaking, my case had fallen at the short end of the longevity scale. Within only one year of getting a stem-cell transplant, blood work indicated that the maintenance level dosage of Revlimid was not able to stop the spread of malignant plasma cells above the guideline at which full chemotherapeutic treatment should be commenced.

What make a serial killer tick?

Anyway, with the prospect of facing several months—perhaps a lifetime—of active chemo again, I was sitting in a chemo chair, going through the Medscape app and reading aloud selections of the side effects to which I was about to be subjected. Naturally, to make the whole experience entertaining for my nurse and the staff who wandered by, I was cherry-picking side effects from the excessively long lists in order to combine them into patterns that were especially interesting or amusing. 

“Oh, look,” I said, as I scanned through the list of side effects you can get from taking Dexamethasone, “this steroid I’m going to take can not only cause insomnia, but it can also make me psychotic. “That’s cool! Everyone thought I was crazy a long time ago: now I am going to have an actual medical excuse.”

One of the nurses, Grace, is a horror film fan. She chimed in by saying that the reason why a serial killer in one of her favorite horror film franchises knocked people off was because his doctor had over-prescribed steroids. 

“Great! Whoever wrote those scripts was quite a clever scriptwriter!,” I declared. He got viewers hooked on the blood and the gore and the suspense involved in figuring out who the supposedly amoral killer might be, but what he was really doing was dramatizing the abuses inherent in our drug-obsessed health system when doctors give the wrong meds to the wrong people.”

No one wanted to touch that insight, except me, eagerly sitting there, waiting for my package of pharmaceutical wonder drugs to come along and rescue me from the agonizingly painful death which my cancer would inevitably bring me without the relief—however temporary—which my chemo could offer me. But I wasn’t quite done yet going through that Medscape list and milking it for all it was worth.

“So, Grace,” I said, “since you’re such a horror film fan, maybe we should collaborate on writing a screenplay for a horror movie. Let’s see now, what should our killer’s character and motivation be based on?,” I said, as I looked over the list of side effects associated with taking Dexamethasone. “It says here that, among the many adverse effects one can get from taking this steroid are: acne, depression, emotional instability, glucose intolerance, increased intracranial pressure, insomnia, perianal pruitus, rash, seizure, weight gain, menstrual irregularity, and psychosis.”

“That’s a hell of a selection you picked out,” laughed Grace.

“Well,” I said, “if you don’t like those, there are plenty more we can choose from.”

“No, those will do fine,” she acknowledged.

“OK, great. I agree. We can save the rest for the sequels. But, for the pilot movie, this set of will be more than enough to get us started. Hmmm, as I see it, our main character could be a lonely, obese, pimply-faced teen-age girl who can’t buy a date come hell or high-water. She’s got an itchy ass, she can’t sleep, and she feels like her head is about to explode. No one understands her; no one can figure out what’s wrong with her.”

“You got all that from the list of side effects?” wondered Grace.

“Sure.” I answered. “It’s all here. This poor girl just wants to be loved, but because she’s over-medicated on some steroid that makes her crazy, she can’t help herself. She finds creative ways to off the popular kids at her high school who ignore her and make fun of her.”

 “So, it’s not her fault. It’s the drugs,” Grace deduced.

“Exactly,” I said. “She is merely an innocent victim of the system, just like the kids she kills are innocent victims of her drug-induced psychosis. What do you think? Will it sell? We can make it a thriller.”

“I’ve watched worse,” Grace admitted.

Of course, neither Grace nor I have begun any work on yet another serial killer slasher movie that contributes absolutely nothing to the current literature on ghouls, ghosts, and goblins I’d sooner forget. Yet, when you look over the laundry list of ailments that can befall you on your way to find a cure for an allegedly more serious health condition, it does make one pause to imagine what could conceivably happen, given a certain set of circumstances. 

Unless we take their drugs, on what grounds can we judge someone else?

It also makes me hesitant to make any moral judgements on people, who, through no fault of their own, commit actions that we would normally consider reprehensible. Although we may detest their behavior, we have no absolute right to judge those who find themselves victimized, trapped, or controlled in a system that they did not design.

You could say that such things are far-fetched. You could claim that people’s characters are not shaped by influences like side effects of drugs. You could even assert that such things only happen in the movies. But none of that is not quite true, for there are plenty of things which happen in real life that never get developed into fictional movies, because, in a pitch session, they get rejected as unrealistic. We only eventually hear about them when they finally make the news. Then we are compelled to extend our scope of reality to include those horrifying portions of our imagination that we would rather not think about. Imagination does not exist outside of the realm of reality, and it never will.

There is very little certainty when the world goes crazy, or when it seems to, from any individual’s perspective. Not to worry. If and when I go crazy, the one thing you can count on is that I won’t also suffer from menstrual cramps. I  would just hope that I don’t get perianal pruitus again. Something like that can drive you nuts.