Damn. That hit hard. The nurse re-weighed me. They had to remix my infusion to match my body weight.
Ouch.
Multiple Myeloma Weight Gain
There are lots of ways to gain weight because of multiple myeloma. Dexamethasone is a steroid. If you weren’t using it to cure cancer, you might be using it to gain weight and muscle.
Coming off of a stem cell transplant (SCT), my oncologist warned me that I would basically go back through puberty. Oily skin, acne, improved sex drive… Oh, yeah. Increased appetite.
Eating Too Much Food
There are a lot of things, and I mean a LOT, that I can blame on my new cancer. The weight gain might, kind-of, sort-of, be the cancer’s fault. I did come back with a voracious appetite after spending 90 days after my SCT nervously swallowing single bites and waiting to see if they’d make me feel like throwing up. But, in the end, I’m overweight for the same reason most people are overweight. I ate too much.
The Multiple Myeloma Diet
When I first was diagnosed with multiple myeloma I asked my doc if there was a diet I should be following. After all, at first blush, it looked like someone with myeloma had just 5 to 7 years to live. When you’re only 46 and you’ve got two kids still in school, you need all 7 of those years. I was willing to eat a sucky diet if that would help.
Unfortunately, my doc told me, “You already have cancer. Eat what you want.”
There is no way to get enough iron in your diet to overcome the anemia you get from chemo. The doc told me that the chemotherapy was like dropping atomic bombs on my system. Eating more iron was like passing out umbrellas.
The good news is that myeloma life expectancy can be way longer than 7 years. And getting to eat what you like during those years of life is a good thing too.
Too Many Calories
You can read all the books you want, and check out and follow all the weight loss gurus you like, but in the end, the reality of the human body is that if you put more calories in than you use, it will turn the excess into fat. If you don’t pay enough attention, one day the nurse has you get up on the scale and it says 229. Then she resets it and has you try again because your last weigh in, a few months ago, said 209.
Resetting the scale didn’t help.
It’s not a secret. I’ve noticed that my shirts that used to be loose fitting are now snug. I can’t even button any of my shorts without putting the waist band “under” the fat around my belly. When I bend down to tie my shoes, part of my body that should be separate come into mushing contact.
I’ve gained weight. A lot of weight. It’s embarrassing. It doesn’t feel good. There will be no “Before” pictures.
Losing Weight With Multiple Myeloma
So, here we go. I have to lose weight while taking elotuzumab and dexamethasone, both of which will be fighting my in the other direction.
The good news is that I don’t necessarily need to do anything extreme. I know exactly where my weight gain comes from. I eat out a lot. Sometimes I eat lunch and dinner out.
There are ways to dine out and lose weight. That isn’t how I eat out. When I roll through the drive thru at Arby’s, I eat like I finally made it to the end of a long journey. Not only do I get a roast beef meal, but I get another roast beef sandwich on top of that. When I eat at home, I make one sandwich, and maybe I eat some chips. Even a lot of chips won’t add up to a box of curly fries.
So, eating out less, and not eating late night Oreos.
I don’t know where I picked up this habit, but I like eating Oreos and dunking them in milk at night. If I do it at a regular hour, my family is still awake. My wife is there to judge me. My kids are there to think they need Oreos too.
So, I wait.
After everyone has gone to bed around 10 pm I wander over to the pantry, pull out 8 or 9 Oreos, pour a small glass of milk and enjoy my snack.
Sometimes you deserve something nice, but I was doing this a few times every week. That’s too much.
I mean, that’s 500 calories right before bed. They say that a five hundred calorie a day deficit will cause you to lose a pound a week. I’m sure the reverse is true too.
So, I won’t be going out to eat, and hopefully the number the nurse gets off the scale next week isn’t in the 230s.
Exercise
If there is one thing that multiple myeloma has beat down on for me it is my physical strength and endurance. I can’t do much of anything without getting winded, and I can’t remember the last time I tried to run.
We’ll start easy: 10,000 steps every day.
It doesn’t sound like a lot, but 10,000 steps is a hearty amount. You can “accidentally” get 7,000 steps by wandering around and doing errands and stuff. You won’t get to 10,000 steps without either a fairly large endeavor, or deliberate intention. Either way is a good way to use up some of those extra calories and build strength and endurance back up.
Here we go.
I’ll keep you updated.
Update
Here is where I’m supposed to tell you how great I’ve done and how well everything worked out. Unfortunately, that’s not what happened. I blew up to 250 lbs. I’m not even sure how it happened.
I joined the local recreation district gym and I’ll be going at least twice a week, so hopefully that helps. The reality is that I don’t want to change my eating too much, so I’m hoping building back some muscle and doing some exercise will be all I need.
For those of you who haven’t followed along from the beginning, let me explain how we got to elotuzumab treatment.
No. There is too much. Let me sum up.
Once upon a time (2018) I was diagnosed with multiple myeloma when my chiropractor sent me for x-rays after months of me complaining to doctors about my back pain. To be fair, back pain is almost always caused by a muscle strain, and myeloma is rare, and typically seen in people two decades older than me.
Anyway, I started on the dex-velcade-revlimid initial treatment cocktail, but when the velcade gave me terrible neuropathy in my hands, and my M-spike started to climb, I had my autologous stem cell transplant (ASCT, or around these parts, just SCT). It worked, but my m-spike didn’t go to zero. For “maintenance” therapy we started daratumumab and 10mg of revlimid.
Dara, as it is affectionately known is the current darling of the multiple myeloma treatment world. It works very well, and is less toxic than a lot of other treatments.
And, that’s when the wheels came off.
My white blood cells and neutrophils plummeted. We stopped the dara and dex, but it was too late. Eventually with zero nuetrophils, I ended up in front of the ear-nose-and-throat (ENT) doc who wheeled me from her office in the outpatient building straight into the emergency room to prep for surgery.
Do not pass go. Do not collect $200.
I had lost my stem cell graft. It might have been the dara.
Although, my oncologist says if it was the dara, that’s a case study. Unfortunately, the only way to find out is to give me dara again and see if it ruins my immune system. Neither me, nor my doc, is willing to take that chance.
As an upside, after coming close to death and getting a LOT of transfusions, including having more of my collected stem cells infused, it turns out my new “transplant” worked. Every test for myeloma is negative including the COLONOseq test that can detect 1 in 105 myeloma cells.
Long-story, made short: MRD-
My doctor wants to keep it that way.
My Elotuzumab Treatment Plan
I just got off the phone with the pharmacist, who is apparently a required step toward getting the elotuzumab (I’m gonna call it elo from here on out) transfusion. I also have to talk to the nutritionist *power eyeroll*.
Remember I’m MRD- here, so we aren’t trying to knock down active myeloma, we are trying to eliminate any tiny traces, and when it tries to come back, be there with stuff already circulating in my blood stream ready and waiting to kick ass.
Elotuzumab Infusions
I don’t know why (I’ll research it and write it up someday), but dexamethasone goes with myeloma treatment like bread goes with sandwiches. So, my infusions will start with dexamethasone. It’s only 20 mg instead of the usual 40 mg. Again, that’s the benefit of being MRD-, you can take the lighter dose.
Elo is preceded by some pre-treatment meds, mostly allergy meds. Then, it’s infusion time. They start slow. The first one takes 4 hours. I get them weekly for two cycles (4 weeks per cycle) and then down to monthly. By the end, they should only take 90 minutes.
I’m gonna need a good book.
I’m trying to fill out and update my Goodreads. You can check it out for other book recommendations. – I highly recommend Once Upon a River. Great writing. Wonderful characters. Satisfying story. — I’m in the middle of Sleeping Giants and like it, but there are a lot of ways to disappoint me going forward, so I’m reserving full judgement. — I’ve only read the first couple of chapters in The City We Became, but I LOVED N.K. Jemisin’s Broken Earth Trilogy. I can’t recommend it enough, and so far The City We Became seems well written and interesting. (Living earth again?) There are some glitches in the writing style and point of view early in the first book of Broken Earth called The Fifth Season. IT’S PART OF THE PLOT! Just stick with it. It will so be worth it in the end.
Maybe my next post can be book recommendations for myeloma infusions and other treatments 🙂
Then, elo works best with pomalyst, or pomalidomide. According to the pharmacist it is chemically very similar to revlimid. But, we are going very light on the dose, 1 mg every other day. Like Revlimid, it has to come from a specialty pharmacy which will mail it to me. The cost will undoubtedly be another indictment of the American healthcare system. Fortunately, I’m one of the lucky ones with good insurance.
For me, after clearing my out-of-pocket-maximum the first month, I get the free healthcare most Americans wish they could have. In other words, I’ll never pay a penny of the $10K+ they likely charge for pomalidomide. I do however have to answer their questions about not getting pregnant (pomalidomide causes birth defects), and then wait for them to overnight the package to me, which requires me to hang around all day because it is a signature required delivery.
A small price to pay to keep the myeloma away until they can find a cure.
This article is in progress as I put together resources on the latest multiple myeloma (MM) research for patients. This article represents advanced information about multiple myeloma for patients and care-givers that already understand the basics of multiple myeloma.
If you want to do your own search for real multiple myeloma research use the site operator on your Google searches. The way it works is that you search for your keyword and then add ‘site:gov’ at the end. This tells Google to only return results from websites that have a .gov domain.
You can go a step further and search ‘site:nih.gov’ but you’ll miss some things that way. Generally, just making it .gov filters out a lot of the noise.
Multiple myeloma research studies and papers I am looking at:
Alternative strategies include the use of agents to disrupt BM-myeloma cell interactions. One of these agents is elotuzumab, a humanized mAb that binds to SLAMF7 (family member 7 of the signaling lymphocytic activation molecule), an immunomodulatory receptor expressed on several hematopoietic cells, including myeloma cells and NK cells (160–162)
Elotuzumab activates Natural Killer cells and the marks myeloma cells to be killed… but it’s complicated and involves SLAMF7, which is my new wrestling name.
I wasn’t going to write this article, but my brain won’t stop writing it in my head whenever I stop moving for a second. So. I’m going to write it, so my brain can do something cooler.
Why The Airport Can Give You Covid
Alright, let’s start with the basics. There are a lot of airports out there. And, some of those airports do a better job with trying to reduce the spread of Covid than others. The smaller and less used an airport is, the better. That being said, they all have very similar problems that make it likely you are going to get Covid if someone there has Covid.
All of the following is doubly true if you fly during a higher demand time like holidays, weekends, and Monday mornings and Friday afternoon/evenings.
More People = More Covid
Math is never wrong. More is more.
You don’t have to be an expert in epidemiology, or understand statistics, to know that the more people there are, the more likely at least one of them has Covid.
Here in Colorado our restaurants are operating at 50% capacity with six-feet between parties. That is actually pretty safe, especially if people are wearing masks when they are up walking around. Six feet turns into zero feet if someone has to walk by your table on the way to the bathroom.
But, it isn’t just the six feet that makes restaurants safer during Covid. Lower capacity means less people. Our local Mexican food joint holds maybe 30 people at 50% capacity. If there is only 30 people, then the odds that one of them has Covid is pretty low, especially when compared to something like 300 people.
If there is no one with Covid, you can’t get Covid, no matter how close people stand to you.
Airports Have Lots of People
Airports have way more than 30 people in them. Sure there is more space, but the odds are still much greater that someone in there has Covid. The only way you can get Covid is if someone has Covid, and it is almost a mathematical certainty that in any airport, there is at least one person somewhere with Covid. – Do you feel lucky? Well do ya?
Does your local airport have just 30 people?
Nope. There are more. Lots more. Even at the smallest airports there are more than 30 people before you even count the passengers.
And that six feet thing?
Airports Are More Crowded
It’s cute that they blocked off some of the seats. Although one airport seat isn’t really six feet across in most cases. It takes three or four airport seats for me to lay across. I’m a couple inches over six feet tall. You do the math.
But it doesn’t matter.
Because, when you go through security you’re going to get close. Really close.
Even if people somehow remember to stay six feet away from you in the security line (they don’t), they won’t think twice about getting right up next to you as you load your carryon bags onto the scanning conveyor belt. And, they’ll stand right behind you as you wait your turn to go into the X-ray, lest someone cut the line.
Oh, and remember one of the X-ray machines is a semi-enclosed tube, that you will walk into seconds after someone else stood in there exhaling. (Probably exhaling more than usual, because people get stressed going through airport security. Oh, and you are probably breathing harder than usual for the same reason, which means inhaling more than usual. You get the point.)
Remember these?
It gets worse. Spacing on escalators and people movers? Nope. People have to wait to get onto those things. When people have to wait, they take their turn as soon as possible. And when they take their turn, they get on right behind others, lest someone else cut them off. Even if you space, the guy behind you won’t.
How about lines for the restaurants? Coming out of the relatively quiet San Diego airport, the line for Einstein Bagels was chest-to-back and 20 people deep. Don’t even look at the small area customers have to stand in to wait for their food. To get everyone six feet apart, you would be too far away to hear your name called when your food was ready.
Boarding Lines Are Never Six Feet Spacing
And when people line up to finally get on the plane, they’ve been waiting for a long time. Expect that line to be front to back, with people trying to cut in as well.
Ever see the lines used to board for a Southwest plane?
All five of you stay six feet apart, in 10 feet of space…
They have these pillars where you line up by number. Numbers 11-15 between two poles that are maybe 10 feet apart. That’s 5 people in 10 feet, or two-feet of space per person.
Oh, but it’s worse than that. There are also five people lining up on the other side of those poles as well. That’s another five people in less than 10 feet of space, going sideways. That’s 20 people in a 10×10 area. Good luck getting six-feet each.
It’s not just Southwest. The other airlines don’t officially mark it, but their boarding lines are just as close together once they call everyone seated in Group 2, or whatever. Often it’s worse because it is first come first serve, and you have to stay close together so no one cuts in.
Then, there is the jetway. Spacing? Nope. That would require another employee to stand in the jetway ensuring passenger spacing, and that costs too much money, and takes too many people.
DIA Is Covid Spreading Dream
Some airports are even worse than others.
Does your airport have a train?
A closed-in train?
A train with standard, not-that-great, ventilation? (Know how you can tell? If you can smell someone’s body odor, you can inhale their breath too.)
At Denver’s airport, DIA, you MUST get on that train to get to the concourse. There is no way to walk and avoid the train.
There is a comical sign in the train waiting lobby (which is often filled with people) that says to space out by moving to the middle of the platform, which works great during very limited “off-hours”. Otherwise, there are likely enough people to fill the beginning, middle, and end of the hall by the time a train arrives.
And, that train you are waiting for is going to have a bunch of other people on it with you, because there is no reasonable way to wait for an empty train.
Sure, you could try and wait, and then, after all of the passengers in the waiting area with you get on the train you will be by yourself — for a moment or two. But, over the next three to five minutes that it takes for the next train to arrive, more passengers will arrive too.
You could wait there for hours and never have a chance to get on a train car with less than 10 or 20 people in it, unless you’re lucky enough to be flying very late at night, or maybe very early in the morning (but there are a lot of flights that go out starting at 6 am). Plus, it is the same train for all three concourses. So even if you get on an empty train out on Concourse C, it’s likely a dozen or more people will pour in at Concourse B (and then Concourse A…)
Masks? Oh sure. If they aren’t eating, drinking, talking on the phone… or just don’t feel like it because they’re tired (or jerks).
Your only saving grace is that the train ride only takes five minutes or less.
The Airplane Will Give You Covid Too
Airplanes love to cite that one study that says you should be safe from Covid on an airplane based on a model that assumes EVERYONE WEARS A MASK THROUGHOUT THE FLIGHT.
But, do you know what happens on every flight?
On all flights but the very shortest ones, at some point during the flight, the flight attendants will come down the aisle and ask if you want a drink and hand you a bag of in-flight snacks. And do you know what happens next?
THE ENTIRE AIRPLANE TAKES OFF ALL THEIR MASKS AT THE SAME TIME AND LEAVES THEM OFF FOR SEVERAL MINUTES SO THEY CAN DRINK AND EAT THEIR SNACK.
Remember, it is ok to remove your mask while you are eating or drinking. Some people nurse that Coke for 20 minutes, not wearing the mask the whole time. That would be fine if it was only that person, but it is almost everyone at the same time, including the guy in the middle seat right next to you. You better snarf down that snack and get your mask back up and hope for the best. Better yet, sit there with your mask on for 20 minutes until most of the planE has put their masks back on.
Southwest doesn’t keep middle seats free anymore like they used to. United, Delta, and the others never did. They just said screw it, we need the money, and they put someone in a seat less than one foot away from you.
Prove It
I’ve been in four airports since the whole Covid thing started. These are my observations, and my opinions. I’m not a scientist, or a doctor. However, all you have to do is look around your airports and you’ll see the same things I saw. Don’t have a ticket? Just go into the airport and start looking around. Head for security. You don’t have to go through it to verify quite a bit of what I said.
Restaraunts?
Escalators?
People Movers?
Security Line?
Baggage Claim?
Security While Preparing to scan carry on luggage?
How Do I Know?
How do I know all of this? Well… *deep inhale, blurt it all out in one breath*
Last year, Colorado’s Governor shut down the state. It worked. Covid numbers (we were still calling it coronavirus then) dropped like a rock. Hospital ICUs had plenty of space, the graph looked great. I heard stories from friends of mostly empty airports and planes that were less than a third full. I had been locked down longer than most people because I started my lockdown in January because of my stem cell transplant. I was dying to get out. To do SOMETHING. To go SOMEWHERE. Especially before I had to start maintenance mode chemo. I figured this might be my last chance to do something while still mostly healthy. So, I booked a trip to the Outer Banks. Then, just before we left, the numbers started getting worse. The day we got back, they started saying, “third wave.” When I got to the airport I got a pit in my stomach. The airport wasn’t mostly empty after all, and United sent me a text saying that my flight was going to be full too, but you can change it if you want. To when? All the other flights were also fairly full.
“Fairly full,” by the way meant all but a few middle seats were full.
I put my head down and hoped for the best.
It worked.
Until we flew home.
Shortly thereafter we tested positive for Covid. We almost certainly got it when we flew home based on incubation period. We were by ourselves (beach house, empty beaches) before, during, and after, when we relocked down. That day we flew home was the only time we were out of our bubble that corresponded to symptoms. I can’t prove that is how we got it, but anyone can go to an airport and prove that the safety of spacing is nonexistent. If you can on a plane you can verify the rest of what I said is true as well.
The rest of the family, ironically, tested positive for Covid antibodies a few weeks later even though none of us got very sick. So, when we flew again this Spring, we did so with an ace behind each of our facemasks, antibodies. This time, I saw all the same Covid issues, but it was even more crowded. The trains were fuller, the sit-down restaurants were spaced, but all the carry away places had un-spaced lines, and those passengers took their food to the gate area where they took off their masks and ate it.
Vaccines for the Win
So what?
So nothing.
Do what you want, just know what the reality is.
The truth is that it’s over. The vaccines are here and millions already have them. Every vaccinated person is a person who “doesn’t count” when it comes to spacing or wearing a mask. That doesn’t mean you shouldn’t wear one, just that if you take it down to drink your Diet Coke, no one will get Covid from you.
But, in another way, that makes the risk so much worse. How much would it suck to get Covid now that you are less than a few weeks away from a vaccine? How much worse is it for someone to die of Covid now when the numbers will be plummeting by summer?
Unless you’re vaccinated, or have antibodies, I’d stay away from air travel for another month or two. After that, you don’t have to worry about being one of those bummer stories about catching Covid right at the end.
My oncologist said this would happen. More specifically, he predicted this would happen following my autologous stem cell transplant (ASCT or just SCT).
At my 100-day post-stem cell transplant appointment, conducted as a virtual appointment thanks to coronavirus (we weren’t calling it Covid yet), my oncologist said, “Let me tell you what is going to happen to you.”
It seems that most people go through a series of fairly specific steps as they recover from the initial devastation of a stem cell transplant. It was curious to note that many of those steps matched the steps of puberty, oily skin, acne, increased libido, but much faster. At the end, he predicted my appetite would come back stronger than before the transplant, and that it would be important to manage it to avoid excessive weight gain.
I heard, but tuned out that last part.
Gaining Weight After SCT
At the time, I was almost 40 pounds lighter than before the stem cell transplant, down in the 170 pound range.
Playing ‘will I throw up or won’t I throw up’ with every single thing you eat will do that to you.
That worked out to me being 30 pounds underweight. (Actually, if I had more muscle, the 40 pound difference could all be healthy, but we’ll get back to that if it ever matters.)
Now, 14 months after my SCT, my weight is back up to about 214 pounds.
Healthy Weight Following SCT
As a 6′ 2″ adult male (down from 6′ 3″ thanks to kyphoplasty), 214 pounds is not out of the range of healthy weight. Unfortunately, I’m still stick-like, skinny in my arms and legs. All of the weight is in what is becoming a cartoon-like belly.
My former “fat pants” only fit me if I button them under my belly instead of at my waist. And by fit, I mean, I can button them and the crushing compression of the waistband will eventually stretch out enough that I can wear them. I’m sure my waist is something like 42″ instead of 36″ but I refuse to buy anything bigger.
The solution is a combination of weight loss and strength building in the form of exercise.
Post-SCT Exercise Program
If you’ve just come off of SCT, please, please, please, check with your doctors and physical therapists before you dig into anything other than minor exercise. There is a point where you are too fragile to do real exercise. Make sure you are past that before you go out and try stuff.
For me, getting in some real exercise is long overdue. I’m still weak, and I shouldn’t be. I’m still easily fatigued, and I shouldn’t be. I’m still anemic even though I haven’t had a drop of chemo in over six months. I need to start exercising, and not just counting a bit of incidental walking as exercise.
So, here we go. I’ll be doing two things. One recommended by doctors and health professionals, and one not.
The first is ramping up an exercise program based upon walking at least 10,000 steps per day. This will be a combination of walking outside thanks to improving weather, and some nice trails around my house, and using the treadmill that we bought when the pandemic shut everything down. As I build up this stamina, I’ll move forward to running.
Do not run until your docs say it is OK. Myeloma can screw up your bone density and running is already tough on your bones.
I will also incorporate some weight lifting in the form of basic exercises using our 5 lb, 10 lb, 20 lb, and 30 lb dumbells.
Those two things together should work to build my strength and endurance.
Post-SCT Diet
The not-recommended thing I will be doing is a crash diet. Dietitians and doctors hate crash diets, but I hate waiting more. If I can’t see this belly shrinking, then I’m just going to start hating everything and give up.
So, crash diet it is.
My current plan is protein shakes for breakfast and lunch and some sort of plain protein (salmon, chicken breast, and so on) with salad. I will ignore all advice beyond this.
The truth about dieting is that doing anything is better than what you are already doing. Salad dressing is not what makes me fat. Fruit is not what makes me fat. Steak is not what makes me fat.
Eight Oreo cookies at 9:00 pm makes me fat. Eating as much pizza as I possibly can makes me fat. Eating piles of potatoes swimming in butter and sour cream makes me fat. Eating three bowls of Frosted Flakes makes me fat. Chicken wings, nachos, beer, candy, cookies, chips, and so on, makes me fat.
Ironically, just stopping the above would probably be sufficient to make me lose weight, but unless I’m on some sort of militant regimen, my brain won’t fight for me and kick those things out.
This is true of most humans, which is why saying “Don’t eat carbs” becomes a successful diet while the equivalent, “Don’t eat junk food and so much bread” doesn’t get any traction among most people. The more squishy your diet is, the less likely you can make your angry face and say no to your cravings. This way, when I break down and have a baked potato it won’t really hurt me.
Yoga
I should probably throw in some yoga too because my flexibility is non-existent, but for now I’m only committing to the exercise and diet.
If I can get my body back into a useful state, we’ll worry about tricking it out, but for now, the belly goes. Everything else is a luxury for the future.
And, when you have cancer, the future is everything.
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.
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 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.
GoodRx works to get a cheaper price on prescriptions.
OK, look. I’m a skeptic. I write a personal finance blog about financial independence, and one of the key things I do is analyze the fine print to find the gotchas.
Things are almost never what they seem, and there is always a catch somewhere. As they say, “If you can’t spot the fish at the table, it’s you.”
To avoid being the fish, let’s take a look at how GoodRx works.
How Does GoodRx Work?
GoodRx works by offering you a cheaper price for some medications via a GoodRx coupon, or other price. To use GoodRx, just give the pharmacist the numbers on your GoodRx coupon.
I blocked out the numbers just in case they are specific to me or private or something.
How To Use GoodRx Step by Step
Like almost everything these days, there is a GoodRx App.
The GoodRx app is the best way to use GoodRx, but you can also use the GoodRx website and print out a code, or email yourself the numbers, or whatever.
You need a prescription from a doctor to get medication with GoodRx. It doesn’t help with that step.
Once you have a prescription go to a pharmacy. Check the GoodRx price before you have your doctor send in the prescription. Have them send it to where you get the cheapest price. Or, if your doctor still has the ability, get a paper prescription, then you can figure out which pharmacy to use later.
For my purposes, I need pregabalin, or Lyrica. It turns out that it is restricted somehow, so I have to get an electronic, direct-to-the-pharmacy prescription, so I had to choose my GoodRx pharmacy first.
It’s cheapest at Costco, but Costco isn’t as easy to get to for me, plus you have to deal with Costco. So, for my purposes the nearby King Soopers is the way to go. I had my doc’s office send a prescription over there. I specifically asked them NOT to include my insurance information.
GoodRx and King Soopers
GoodRx mentions that some pharmacies may not work with GoodRx, or that some won’t realize that they have to work with GoodRx. There is a phone number that you can call when that happens.
At King Soopers (it’s the Kroger grocery store in Colorado), they not only accept GoodRx, but it is up on some of their own signage. When I went to the pharmacist to get my prescription, she set it down on the counter and said, “You don’t want to pay that.”
I said, “I have this GoodRx thing.”
She replied, “I was hoping you would say that.”
So, however GoodRx works, King Soopers is fine with it. The difference for me was $477 with no insurance coverage to $17.26.
To get that price, she had me read off the Member ID, Group Number, BIN number, and PCN number. She punched them into the computer and my new cheaper GoodRx price came up. She also said that now it would be in the computer and they would use GoodRx automatically for my next refill.
(Here is a curious note that I don’t have time to look into. According to the GoodRx app, it will give you a price of $15.97 at Costco. The interesting part is that is from the regular price of just $60. Everyone says Costco is the cheapest way to get prescriptions. I see more and more evidence that, that is true. If you don’t have insurance, check out Costco pharmacy prescriptions.)
GoodRx With Insurance
Let’s start at the beginning. I have cancer. I take tons of medications. For all of my medications, except pregabalin, I pay $0. That’s right, nothing. Every once and a while a pharmacy tech will comment, “Your prescriptions is free. You must have good insurance.”
The full pharmacists never say this. They have a better understanding of how health insurance works for prescriptions. They probably have an inkling that my medications are “free” because I’ve already paid out a lot, which is true. I hit my out of pocket maximum within a few days of the new insurance year.
I happened to be in the hospital this year, but it wouldn’t take long anyway. A single dose of most chemo medications costs thousands of dollars.
The only prescription I have a problem with so far is pregabalin, or Lyrica. It is not that my insurance does not cover pregabalin, it does. However, it only covers a certain amount, which is lower than what I need to maximize my pain relief. So, I need a way to pay for the rest of the pregabalin I need.
At my usual pharmacy, the extra, uncovered pregabalin would cost $117. That’s not terrible, but, I’m not looking to add another $1,400 per year to my medical expenses.
You can’t use GoodRx and insurance at the same time. Using GoodRx prescriptions is like paying cash. That means that the amount you pay for GoodRx medications will not count toward your deductible, or annual out of pocket maximum.
GoodRx works to get you a lower price without your insurance, so it may be worth pay a little more if that helps you hit your insurance company deductible, or other benefits.
Like so many Americans with high medical costs, I’m always on the look out for an alternative. I’ve seen plenty of GoodRx commercials and advertisements, so I thought I would look into how GoodRx works and if it would help me.
Is GoodRx a Scam?
My biggest concern was for a GoodRx scam. There are two ways to know something is not a scam. First, they didn’t ask me for any payment information.
There is a GoodRx upgrade called GoodRx Gold. It appears to be a subscription program that offers you cheaper GoodRx prices than the regular users get. People who need more prescriptions might find GoodRx Gold worth it, but for me just getting this one medication, GoodRx Gold is not worth it to me. I did not use it so I can’t do a GoodRx Gold review.
The second way to know something is not a scam is to figure out how it makes its money. That’s harder than it sounds. It isn’t obvious how GoodRx makes money.
I did a lot of research about GoodRx prices and how GoodRx makes money. First GoodRx offers insurance network or pharmacy benefit manager (PBM) prices to customers. In exchange, GoodRx owes the PBM a fee for using the network.
But, when you use GoodRx the pharmacy pays GoodRx a fee based on being part of the PBM.
GoodRx refunds part of that fee to the customer create an even cheaper price. This is kind of how Rakuten works to pay cash back. GoodRx works by passing on the part of the fee paid by the pharmacy to the PBM, and keeps whatever is left over.
It doesn’t sound like much, but like with a lot of things, if you turn a few bucks per customer into lots of customers, you make lots of money. That is why GoodRx is free and spends a ton of money on advertising.
According to GoodRx investor relations, GoodRx made over $100 per quarter with this business model, so I guess is no need for GoodRx scamming me 🙂
Where GoodRx Does Not Work
Nothing is perfect. I found good prices for GoodRx Adderall coupon, and also my previous neuropathy drug. The GoodRx gabapentin coupon price is also a discount if your insurance doesn’t/won’t cover it.
On the other hand the GoodRx Vyvanse coupon price is still in the $400 range in my area. I guess they don’t offer as much of a discount via the PBMs GoodRx works with.
GoodRx Review
I have only tried GoodRx with one drug, and only at one pharmacy, but so far, I am thrilled with how well GoodRx works. I would recommend GoodRx to anyone looking for a way to get cheaper prescriptions.
Neuropathy Review
You can also try alpha-lipoic acid for neuropathy. It is over the counter treatment for neuropathy that lots of folks swear by. So far, I don’t think it really seems to be helping me.
You can also try CBD. If you live in a state with medical marijuana, studies show that using a 200:1 or 100:1 type of CBD:THC product provides the best relief. You may need a medical marijuana card or equivalent in your state.
About the Author
Brian Nelson is an expert via first-hand knowledge, but is not a doctor. Brian was diagnosed with multiple myeloma in 2019. He has been living with it ever since. All information is form informational purposes only, and is not medical advice. Check with you own doctor about your specific situation for medical advice.
If you’ve been reading the news, you know that the Covid vaccine rollout has had its share of problems. You also probably have seen that virtually all states have come up with a tier system that tries to get the Covid vaccine to the most vulnerable people the fastest.
Cancer patients count as vulnerable in most of those systems.
I tried to get a Covid vaccine stock photo, but didn’t want to spend all day on it, so I took this one from the Pfizer oncology press kit. – I figure we count for that, eh?
What Tier is Multiple Myeloma for Covid Vaccine?
While the tiers are not the same across all of the states, most states have set Tier 1 as health care professionals that work directly with Covid patients, as well as various first responders that potentially come into contact with Covid victims. Obviously, this tier would not include multiple myeloma patients.
However, the second tier, or Tier 2, in most Covid vaccine rollouts include patients who are immunocompromised. Multiple myeloma patients should fall into this tier. Myeloma is a disease of an important component of the immune system, after all. That being said, there can be a lot of interpretation between who is immunocompromised, and who is more immunocompromised than those suffering from other aliments or diseases.
Vaccine Availability
It is also important to understand that the availability of the vaccine plays a role in when I will receive the Covid vaccine as a multiple myeloma patient.
In my individual case, my oncologist has informed me that I will get a message directly from the hospital system that I got my SCT from. The bone marrow transplant unit there has a database of immunocompromised patients. As one of the largest hospital systems in the state, much of the vaccine supply comes in through their doors, especially the Pfizer vaccine due to its difficult refrigeration requirements. And, finally, as one of the largest facilities in that hospital system… well, you get the idea.
My oncologist thinks that I will likely get vaccinated in February, but to keep an eye on my health care portal messages starting now.
The trick to a quick vaccine rollout is that you have to keep moving forward instead of getting caught in bottlenecks like finding and contacting immune compromised patients. As a result, while the state is figuring out how to find and contact multiple myeloma patients in more rural areas, my BMT group will be reaching out and vaccinating us. I suppose this is another reason that all things being equal, you want to be near the research if you have cancer — a university-affiliate hospital is probably the best unless you live near one of the major cancer centers like Anderson, or Mayo.
Multiple Myeloma and Covid Vaccine
All three of the Covid vaccines approved for emergency use by the FDA are non-live vaccines. That is, the material in the vaccine is not weakened virus like the MMR vaccine is, so it cannot give you coronavirus, no matter how weak your immune system is. (If your immune system is too weak, however, it won’t mount a response which means the vaccine will be wasted. They might not give it to you right after ASCT, or even some chemo if your immune system is knocked too far down.) If the Covid was a live vaccine, they probably would not give it to myeloma patients at all, or at least not until they had studied it in the strongest of us.
These mRNA vaccines are actually a great advancement, and might prove useful for other future vaccines as well, which would be great for us myeloma patients.
Vaccine Covid Antibodies and Multiple Myeloma
One of the most interesting facets of getting the Covid vaccine with multiple myeloma for me is that I have already tested positive for antibodies to coronavirus despite never having actually developed any Covid symptoms. (Lucky, right?)
The oncology team still wants me, and all of the multiple myeloma patients who had Covid, vaccinated anyway. And, for bonus fun, they’ll be monitoring our blood draws to see if, how, and when people with multiple myeloma mount a response to the Covid vaccine.
So, while cancer patients like us won’t be skipping the Covid vaccine line, we won’t be at the end either, which is a nice change from last year, when we were put at the bottom of people to treat if there was ever a need to triage Covid care.
Covid Vaccine Reactions Multiple Myeloma
If you get the Covid vaccine and you have multiple myeloma, let us know how it goes. So far, the people I know that did get it report fevers, sweats, and pains, ironically, kind of like getting the flu. But, it only lasts for one or two days. The fevers are so common, that my doc even said if I got a fever after taking the Covid vaccine to just take Tylenol and get some rest, not call in like I’m usually supposed to if my temperature ever goes over 100.4 degrees.
Welcome to the post-Covid age, my myeloma friends.
When I got blasted with melphalan last year as part of my autologous stem cell transplant (SCT), it chewed up the nerves in my feet leaving me with some pretty substantial neuropathy.
What Is Neuropathy?
You can find the official medical definition of peripheral neuropathy here. For, those of us with multiple myeloma, neuropathy is a pain and numbness, usually in the fingers and feet. It is caused by the chemotherapy drugs.
Velcade side-effects caused neuropathy in my fingers until my hands hurt so bad I told them to take me off it, and figure something else out. (This is why I switched doctors. You shouldn’t have to beg for your own quality of life.) It left me my feet mostly alone.
My fingers are largely better now. There is no pain, but there is a numbness or missing nerve sensation that makes things like separating two book pages, or counting out cards, or money difficult. I have to really focus, and rely on my sight as well.
Neuropathy in Feet with Myeloma
These days, nearly a year after my SCT, my real difficulty is the neuropathy in my feet. I started, like so many patients with gabapentin. It seemed to work for a while, but the dose went up and up, until it wasn’t really working.
My current doc considers quality of life actually suggested medical marijuana and/or CBD. I need to look into that. In the meantime, I wanted the ease of a prescription.
He set me up with pregabalin. I haven’t had any pregabalin side-effects, which is very nice.
Pregabalin for Neuropathy Pain
Here we go with the sucky US healthcare system again. It’s a shame that Republicans can’t fight over how to make healthcare better, instead of just tearing down anything Democrats made. You don’t like Obamacare? Fine. Make something else, but quit pretending the nonsensical system we have in place doesn’t need any fixing.
You see pregabalin costs a lot of money of money because there is no generic version yet. It is sold under the brand name of Lyrica.
Fortunately, for me, I have pretty great insurance. It will cover Lyrica with some sort of deductible, and some sort of co-pay. As a cancer patient, those numbers are meaningless to me. I blew past my out-of-pocket-maximum in just days. All that matters to me are coverage limits.
In this case, my insurance will only cover 300 mg per day. I really need 400 mg per day to make my feet manageable. (Don’t get me wrong. This doesn’t bring my feet anywhere near to normal, but I can ignore the nerve issues… unless I step on something.)
Doctor versus Insurance Company
One of the reasons you want to have a good doctor who really considers patient care the most important thing they do, is because in situations like this, the only hope I have is for my doctor to do some sort of battle of words with my insurance company to get them to cover the 400 mg.
If he loses, I’ll make do with 300 mg and maybe see if I can get a double prescription for nortriptyline, which I have a prescription for, but it’s for bedtime. Supposedly, a side-effect of nortriptyline is that it makes people very drowsy. It doesn’t necessarily have that effect on me, so rolling out of bed with that, and then, doing the 300 mg pregabalin might just do.
It is easy to forget that first and foremost, multiple myeloma is a blood disease. That means that in addition to being a cancer treated by oncologists, it is also right in the wheelhouse of hematologists.
This year, it’s the 62nd ASH Conference. Like most things this year, the conference was converted from a big meeting in San Diego, California to an all-virtual event to avoid issues from the Covid-19 pandemic.
Hematology and Multiple Myeloma
Obviously, not all of the presentations at a hematology conference have anything to do with multiple myeloma, but a lot a research does get presented at the conference. There are numerous Twitter users that do a good job of getting out summaries and notes about various presentations that might be of interest to the myeloma community, and, of course, to me.
One of the topics that keeps coming up is particularly disturbing to me.
An increasing amount of research shows that daratumumab is very effective against myeloma in almost every stage of treatment. Of particular concern to me is this concept.
Daratumumab increases the length of sustained MRD negativity
If you’ve been following along with me, you know that last year, I was put on a dara and 10mg revlimid cocktail for my maintenance regimen post-ASCT.
We stopped the revlimid almost right away. I took four infusions of dara. During that time, my immune system blood numbers went down, and down, and down, until they basically hit zero.
Shortly thereafter I ended up in the hospital where otherwise trivial bacterial and fungal infections forced me into the hospital for pretty much the whole month of June.
My oncologist suspects that I had a rare reaction (Oh goodie, here we go, a rare cancer, and a rare reaction) to Daratumumab in which it affect my immune system, and apparently made me lose my stem cell graph. We had to reinfuse stem cells that were left over from my ASCT to get my immune system back.
So… unless something has changed, dara and me do not go together. This looks increasingly like a bummer as much of the research presented this year at the ASH conference shows how great dara is at treating multiple myeloma, in pretty much all phases of the disease, and how adding it to other standard treatments improves outcomes in myeloma patients.
What Next Myeloma Treatment
If it sounds like there isn’t really a point, and that I’m mostly whining, you are not wrong. Fortunately, there were a lot of other presentations that I haven’t even got to looking at yet. There may be alternatives, and there are definitely new things coming down the pipeline.
It’s hard not to be encouraged by sentiments like this:
