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Multiple Myeloma Treatment

Elotuzumab Multiple Myeloma

Empliciti is the brand name for elotuzumab. (*Adds elotuzumab and empliciti to autocorrect dictionary*) I will be using elotuzumab and Empliciti interchangeably so that I can focus on facts and not what elotuzumab is called.

I will be taking elotuzumab soon, so it is time to review elotuzumab and look at potential elotuzumab side effects and dosing for multiple myeloma treatment.

Why Elotuzumab or Empliciti

As I understand the term, my current multiple myeloma status is MRD negative. The short-short version is that there is no MRD detected anywhere in my body, even by a test so sensitive that it can detect just one cancer cell among one-million cells. This is good news.

In all of my tests since they changed my patient status last fall to multiple myeloma in remission, my myeloma markers all come back negative, or in the green (normal) range. This is also good.

But, in every monthly meeting with my oncologist, as he stares intensely at the screen with my numbers on it, he fidgets terribly with his fingers as he reads off the good news. He is nervous.

And when he is nervous, I’m nervous.

I’m still in remission and my tests all still say zero, so we’ve been working on my other health issues. I’ve stopped taking the powerful antifungal, posaconazole. My blood pressure is finally coming down from ridiculous highs.

I got my sleep apnea results back, and apparently I have “severe” sleep apnea, so I’m getting a CPAP machine, but it will take a couple of weeks. When it comes to sleep there isn’t much of a sense of urgency. After all, you won’t die from crummy sleep so… Apparently, sleep apnea can cause higher blood pressure. Who knew?

My blood pressure is mostly under control with a combination of lisinopril and carvedilol, but my guess is that if the sleep apnea thing works, then maybe that is one more medicine I can stop taking. Besides, maybe I’ll get deeper, more restful sleep.

Check out my Stash vs Acorns and more review.

My hemoglobin shows me as anemic, but just barely so. This has been the big concern. Anything my oncologist can give me will lower my blood counts, so having normal, stable, healthy blood counts first is ideal.

So we wait.

But, he’s nervous.

Elotuzumab Maintenance for Multiple Myeloma

So, the issue is that while my myeloma is zero now, it can explode back to very-not-zero in a short period of time. The way to avoid this is with some maintenance chemotherapy.

The idea is that if a cancer cell does try and start something, there will already be chemicals in my body ready to kick it in the teeth before it can even get started, instead of it getting a running head start in between monthly (or longer) monitoring.

Enter elotuzumab.

The similarity in the elotuzumab and daratumumab names is not a coincidence. The drugs are related, but not the same.

As my doc explains it, elotuzumab is a relatively benign chemotherapy that does a great job at keeping myeloma from increasing, but a bad job at lowering myeloma counts. Since I’m already zero, stability is good.

We didn’t start it today, but it is coming next month. He gave me what he called, “a bunch of medical marketing material.”

I like my oncologist. 🙂

elotuzumab information dosing side effects and package insert
Elotuzumab package insert and marketing material

Why Elotuzumab?

I need to understand my myeloma treatments and the chemo they are giving me, including why I take elotuzumab for multiple myeloma maintenance.

The short answer is that daratumumab didn’t work for me, or rather it worked too well, taking out my immune systems along with myeloma. Daratumumab is the darling of the multiple myeloma treatment world. Papers are starting to call for daratumumab to be a first-line treatment, adding it to the standard Revlimid, Velcade, dexamethazone treatment regime. Elotuzumab is the red-headed stepchild of daratumumab.

Elotuzumab Dosing

According to the elotuzumab package insert and brochures I received, elotuzumab dosing usually involves dexamethasone and either Revlimid (lenalidomide) or Pomalyst (pomalidomide). My oncologist says we’ll be adding Pomalyst.

So Empliciti dosing is done by infusion, whereas Pomalyst and dexamethasone are taken as pills.

How Does Elotuzumab Work?

According to the medical marketing material supplied by Empliciti’s manufacturer, Emplicity helps mark, or identify myeloma cells making them easier to find. Then, it activates NK cells (Natural Killer cells) which attach and destroy multiple myeloma cells.

Sounds good, but apparently it doesn’t work at well as daratumumab. Maybe, in my situation that doesn’t matter since I’m starting at MRD negative. All I need is to make sure it doesn’t come back. I don’t need it to root it out.

Elotuzumab Side Effects

Like all chemotherapies, Empliciti can cause other cancers. There really isn’t anything you can do about that if you are taking chemo.

Other side effects include liver problems, fever, rashes, trouble breathing (fun!), dizziness, light-headedness, and as always, infections.

I’m already familiar with the dexamethasone side effects. I guess it depends on the dose. I tolerate the smaller doses pretty well.

I will have to look up Pomalyst since I have never taken it before.

As always, we’ll hope for the best.

Elotuzumab Schedule

The schedule for Empliciti dosing looks familiar to my old Revlimid schedule, with a 28-day cycle.

For the first two months, you take elotuzumab once a week via IV infusion. You take dexamethasone every 7 days, on the same day you get your empliciti infusion. You take pomalyst every day. Starting on day 23, you stop taking everything (no dex or pomalyst) until the next infusion. Basically, a one-week off period.

After the first two cycles, it goes monthly. You get the elotuzumab infusion on Day 1 and take dexamethasone on Day 1 and then every 7 days. You take Pomalyst every day, stopping on Day 23, and taking a week off from all meds until the next cycle where you repeat the same dose schedule.

About the Author

Brian Nelson is an expert on multiple myeloma via first-hand knowledge as a patient but is not a doctor. Brian was diagnosed with multiple myeloma in 2019. He has been living with it ever since. All information is for informational purposes only and is not medical advice. Check with your own doctor about your specific situation for medical advice.

Categories
Multiple Myeloma Treatment

Myeloma Chemotherapy

Myeloma chemotherapy generally starts out pretty well for a lot of myeloma patients, depending on where they were in the course of the disease when they got diagnosed. For weeks, friends and family remarked on how well I looked. It seemed like nothing had changed.

It turns out that the various myeloma chemotherapy drugs all have huge possible side effects. That isn’t surprising considering chemotherapy is essentially a nice medical word for targeted poisoning.

Chemotherapy side-effects can take a while to build up in your body. You see, if you lose 20,000 healthy stem cells, your body has more. But, if you lose another 20,000 the next month… and the next… well you get the idea.

myeloma chemotherapy healthy cells chemo
Hello, little cells… the chemo drugs are here… AGGGHHHH!!!

All chemo drugs are poisons. They kill both healthy cells and cancer cells. In general, they target fast dividing cells. Cancer cells divide very quickly, but so do some other important cells in your body. The hope is that the drugs kill cancer cells faster than healthy cells, thereby giving a net win to the body overall.

But, even if it works out as a net win, you still killed a bunch of healthy cells, and your body needs those cells to do things.

Chemotherapy For Myeloma

For multiple myeloma, the front line of chemo usually consists of dexamethasone, velcade, and revalimid. There are many variations depending upon the patient’s circumstances and things like allergies and other reactions, but my oncologist calls this combination the peanut butter and jelly of myeloma treatment.

Dexamethasone and Myeloma

Dexamethasone is a cheap steroid that has been around for years. It is usually administered in small doses. The biggest size pill is 4 mg.

For multiple myeloma patients, the dose is 20 mg. That’s five of the highest dose they make. If people actually took this dose as a normal standard of care, they’d make a larger pill. But, only us cancer patients take this much at a time.

I take dexamethasone on a sort of bizarre schedule of on two days, off one day, on two days, off the weekend. Either way, that’s a crap ton of dexamethasone.

Wondering about Credit Karma?

When you take a lot of steroids, it gives you energy and power. It also keeps you awake. I take the first dose and spend the night with very little sleep and very little tiredness. I am invincible!

But, when the steroids leave your body, it causes a terrible energy crash. Think chugging Red Bull and eating sugar all night and then the crash that comes after and multiply it by 10. This is where they start giving you medicines to fix the problems caused by the medicines they gave you before. Welcome to cancer medicine.

Many patients get some form of sleeping pill that helps, but cannot overpower the second day of taking dexamethasone in a row. I have temazepam, it works sometimes, but not on Day 2.

Velcade and Myeloma

Next up is velcade. I’m not sure what dose of velcade I get. It is an injection that I go into the clinic twice a week for. They draw my blood. Then, we wait until the results show up saying that it is okay to give me the velcade without triggering a major medical event, or outright killing me.

I got a really nice talk from the “financial counselor” at the clinic about the bills I would be getting. Fortunately, I’m lucky enough to have good insurance. As near as I can tell, it is $4,000 per shot… I go in twice a week. I hit my insurance plan out-of-pocket maximum the first week.

It just takes a while for all the computers to update. In the meantime, I have to make payments, and copays, and so on, and then wait for the refunds to come in the mail.

Velcade causes neuropathy. My fingers hurt. The tips are less sensitive. It’s not that I can’t feel them, it’s that they seem a tiny bit numb, like if they were minorly burned. I can touch stuff and type, but I have trouble being able to tell if there is one piece of paper or two. I can’t really feel the distinction.

If there are two pages, I have trouble putting my fingers in the right place to separate them. I can’t shuffle a deck of cards anymore.

You should be starting to get an idea about how these drugs are not subtle.

Revlimid for Myeloma

Finally, revlimid is a relative of the drug thalidomide. Yes, that thalidomide. For those of you too young to be in on the “joke” thalidomide was a drug given to pregnant women in the 1960s to help with morning sickness, insomnia, and other stuff. The punch line? It can cause major birth defects.

So, what am I doing taking a version of this drug in 2019? Killing cancer cells.

I take the 25 mg tablets. I think after my stem cell transplant I will take 10 mg tablets as part of maintenance mode, so I guess 25 mg is a lot. I take it on weekdays for three weeks, then I take a week off. I’m not 100% what this does. Maybe the idea is that if I stop poisoning myself for a week some of the healthy cells will grow back before I die.

In order to get revlimid I have to answer a series of questions both with a pharmacist, and with a representative of the company that makes it. All of which are recorded. Essentially, I have to say that I’m using birth control (if sexually active with a woman with a “functioning uterus”). That I won’t share my medication, and that other people shouldn’t touch it. In other words, if a baby shows up with birth defects around me, and I try to sue, they have dozens of recordings of me saying it’s my own fault because I knew better.

As a man, I get off easy. Women have to take a pregnancy test each month.

Oh, and by the way, it costs $10,000+ for each month’s supply. Having cancer without insurance is a big problem in America.

Myeloma Chemo vs Other Cancers

It turns out that I don’t know very much about cancer in general. Taking pills and shots while walking around doesn’t seem like the chemotherapy I see in movies and on TV shows. I guess I get the more typical chemotherapy experience in a few months when I do the stem cell transplant and they kill my immune system (stronger poison for better health!) and I spend a few weeks in the hospital.

It could be worse. I could have pancreatic cancer. As far as I can tell that’s the worst one. I’ll do more research when me and my dexamethasone can’t sleep.