Categories
Living with Myeloma

229 lbs

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.”

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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.

myeloma weight gain scale

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.

Good luck to you all. Brian out.

Categories
Multiple Myeloma Treatment

My Elotuzumab Regimen

My Myeloma History

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.

elotuzumab-journey-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.

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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.

So, that’s it. It all starts next week.

Wish me luck.

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.

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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.