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.

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.

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

Wish me luck.

Categories
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

MRD negative Multiple Myeloma Status

Who is your daddy!?

OK, I’m old, so that doesn’t mean what you think it means. I mean it in the Ace Ventura, “First I’d find a motive, then I’d lose 30 pounds PORKING HIS WIFE!” sort of way.

Fighting Multiple Myeloma

When I fought through my autologous stem cell transplant (ASCT) and its aftermath only to achieve “multiple myeloma not having achieved remission” as my official diagnosis, I tried to look on the bright side. My numbers were way down, and my M-protein stood at 0.6, which my oncologist mused might be from MGUS that I had prior to being diagnosed with myeloma.

No remission for me…

I asked my doc if that meant my stem cell transplant failed. He said no, and the numbers being way down were proof.

He didn’t sound like he believed it.

So, we started in on a daratumumab and revlimid treatment that proved disastrous for me. I spent much of the summer in the hospital, lost my stem cell graph, and had to get a replacement infusion of stem cells in what my doctor termed a “stem cell boost,” in order to restart my immune system that had failed all the way to 0.0 neutrophils.

Check out my Acorns vs Stash review

I stayed alive (luckily), got through all of the fevers, the night when I was drowning from the fluid in my lungs, and all the aching, needles, getting a port inserted, and frequent infusions of platelets, and blood transfusions.

Maybe that is what people mean when they say, “fighting cancer.”

But, what if there was a silver lining?

Multiple Myeloma MRD Negative

If you think about it, I essentially had back to back stem cell transplants. For the first SCT, they deliberately killed my immune system with powerful chemo in the form of melphalan. For the second SCT, my body spontaneously killed my immune system by overreacting to daratumumab (and exposed my body to a dangerous fungal infection… thanks for nothing 🙂

Either way, my immune system was cleared out twice.

The result?

The myeloma tests after checking out of the hospital showed no trace of multiple myeloma cells in my body.

That’s myeloma remission.

But, how much remission?

Certain tests are only so sensitive, so when those tests read zero, they send you for more sensitive tests to detect even the smallest amount of myeloma cells. My blood tests said zero, so it was time for a bone marrow biopsy.

However, this time, in addition to the usual bone marrow biopsy testing, they took some extra bone marrow and shipped it off for the most sensitive testing possible for multiple myeloma.

Measurable (or minimal) residual disease (MRD) refers to the small number of cancer cells that can remain in a patient’s body during and after treatment and may eventually cause recurrence of the disease. These residual cells typically cause no physical signs or symptoms and are present at such low levels that more refined and sensitive techniques are required to identify them.

https://www.clonoseq.com/the-importance-of-mrd/

In my case, a test called colonoSEQ, which they run on a bone marrow sample. This same test works on related blood cancers like leukemia.

ColonoSEQ can detect one single cancer cell among 105 healthy cells. The idea is that if this test cannot detect myeloma cells, then the amount of such cells in the body is so small that the patient can be said to have no myeloma, or remission. The technical term is minimal residual disease (MRD).

See my look at Acorns investment returns.

Unfortunately, multiple myeloma has no cure, and relapse will occur eventually in almost all cases, but MRD negative is the least amount of disease possible in the human body.

Guess who is MRD negative?

I guess that means I’m in remission.

Categories
Multiple Myeloma Treatment

Bone Marrow Biopsy Results Multiple Myeloma

My multiple myeloma bone marrow biopsy results came in.

And, today we Google.

As is always the case, I have a visit with my oncologist coming up after having done some testing to check on the status of my multiple myeloma. Talking to the doctor will give the actual, real results of my MM condition and how it applies to me.

But, we have this health care portal thing, and my test results show up there, and I kind of like knowing what is going on.

Since my diagnosis, I’ve picked up some terminology and understanding of what certain tests are, and what we are looking for, and how they apply to me. As always, there are different forms of myeloma and they affect different people in different ways, so what is important for me sometimes overlaps with everyone else, and sometimes does not.

If you haven’t read along my journey, it can be helpful to know where I am now while interpreting these results:

  • Diagnosed with multiple myeloma 18 months ago
  • Did standard revlimid, velcade, dexamethasone treatment for six months
  • Stem cell transplant 11 months ago (successful – partial remission)
  • Started maintenance mode of daratumumab and 10mg revlimid
  • Immune systems crashed – all maintenance drugs stopped
  • Spent two months in and out of hospital — lost my stem cell graph
  • Got “stem cell boost” four months ago
  • Multiple myeloma results started showing complete remission
  • Blood weak – numerous platelet transfusions and several blood transfusions
  • Neuropathy in feet – if only I could get that to go away, I’d be mostly normal

Interpreting Bone Marrow Biopsy Results Multiple Myeloma

Bone marrow biopsies, or BMB, take a few days to process, and that is often just to first results. If I recall correctly, some of the results come in even later. So, it’s been 7 days since my BMB, and the first stuff is showing up in the health care portal. Unlike other tests, I’m not really sure what I’m looking for in the results.

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At least the summary doesn’t say anything overly scary in layman’s terms, but that doesn’t mean it isn’t bad (or good). It does however, have some sentences that are the conclusions. It’s just that I don’t understand them. We’re going to google it, but it isn’t as easy as it sounds.

Variably normocellular marrow with trilineage hematopoiesis.

Holy crap! Spellcheck got the word hematopoiesis. I’m impressed.

After some looking, the point of this sentence is how well my stem cell infusion is working. Trilineage hematopoiesis refers to my bone marrow making the three kinds of blood cells, white blood cells, red blood cells and platelets. The word normocellular is good too. This refers to the fact that as we age the amount of these cells decreases. Later on the comment says that the marrow is variably normocellular, ranging from 30% to 70%. That’s also good. — So we’re going to chalk conclusion #1 up as a win.

No morphologic or phenotypic evidence of plasma cell neoplasm

Alright, this one was easier to suss out. The main thing of multiple myeloma is that plasma cells, which usually make make antibodies to fight bacteria and viruses, go nuts and keep making antibodies whether the body needs them or not. Plasma cell neoplasms are caused by myeloma cells and end up forming tumors in the bones and soft tissues. This is what wrecked my back last year causing a pathological 25% compression fracture.

So, if there is evidence of plasma cell neoplasm, that’s good news. Even if there is some myeloma running around in my body it is not, as of now, causing trouble.

So far, this is good news for your’s truly.

Peripheral Blood Results:

This lists, without comment Thrombocytopenia and macrocytic anemia.

Thrombocytopenia means that my blood has an abnormally low amount of platelets. We already knew this one. My latest result is 69, the normal range starts at 150. I get a transfusion of platelets below 30. But for normies, numbers beneath 50 require “emergency treatment.”

So, this number is shockingly bad for the normal population, but not at all terrible for the current state of my body. Also, the number it trending up, albeit very slowly.

Macrocytic anemia means both that my red blood cells are abnormally large, and that there are less of them than normal. This is bad, but it isn’t new news. Again, my marrow should be making more red blood cells than it is. This number has been trending up, so while it means that I have little energy and tire very easily, I can live with it.

There is no increase in plasma cells with no
monoclonal plasma cell population

Whoo hoo!

This is wicked good news.

Monoclonal plasma cells make the dreaded M-protein that this the calling card of multiple myeloma. If there is no increase in plasma cells (myeloma is characterized by overproduction of plasma cells), and there is no monoclonal plasma cell population, that means there is basically zero m-protein in my body right now. — That’s continued remission.

Woot! Woot!

The Rest of the Bone Marrow Biopsy Results

Yeah… welcome to the thunderdome of medical words and jargon. I’m not going to bother googling all of this because interspersed within the jargon are words like, “within normal range,” “no significant,” and “adequate,” and “appropriate.”

Scattered kappa positive and lambda
positive plasma cells with appropriate proportions

This was buried down in the notes, but it is also very good news. One of the telltale signs of myeloma is out of proportion kappa and lambda light chains. So, if I have “appropriate proportions,” that’s very good.

Good News for Multiple Myeloma

As near as I can tell, this confirms what we have been seeing in my blood work. There is currently no myeloma detectible myeloma in my body. That’s full remission. Woot!

What’s Next?

After seeing zeros on the usual tests for all of myeloma stuff, my doc sent off for a specialized test that can detect the tiniest traces of multiple myeloma in my body. According to this report, that will be reported by some genetics laboratory later.

So, I’m not dying. Not any more than you are, at least. I still have issued. My stem cells aren’t kicking out my red blood cells, or platelets as well as they should. I’m still anemic, which is concerning because I’m not currently taking any chemotherapy, so there is really no reason for me to continue being anemic other than my body just isn’t back to full function yet.

If it is coming, just very slowly, then I’ll take it. I just hope this isn’t maxed out.

Similarly, while my platelets no longer require regular transfusions, they aren’t “normal” in any way. That is the same problem, the bone marrow needs to crank them out faster.

Until then, I’m taking all those vitamins (folic acid, and B-12) to help anyway I can.

Multiple Myeloma Life

Did you know that Tom Brokaw has multiple myeloma? He wrote a book about it if you are looking for some connection and, frankly, some hope, because he has obviously continued to do very well. He’s 80 now.

Categories
Multiple Myeloma Treatment

Cancer and CBD Oil

No matter what any CBD zealot tells you, CBD oil will not treat or help your actual cancer in any way. However, CBD can help many of the side-effects you get from from cancer.

I have multiple myeloma, a blood cancer. Like many of my fellow myeloma warriors, our cancer causes pain. CBD oil helps pain in some cases, but not all. It’s important to find out if CBD oil will really work for you.

Recommend CBD Oil for Neuropathy

One common reason to for cancer patients needing CBD oil is the pain caused by neuropathy. Neuropathy exists outside of the cancer population as well and has numerous causes. For cancer patients CBD is typically needed after chemotherapy causes neuropathy.

Neuropathy pain is tricky to treat. Some patients respond very well to some treatments, while others don’t respond to similar treatment. I take gabapentin three times a day. I know others who take higher or lower doses. Gabapentin is well tolerated in most people, so oncologists have no problem kicking up the dosage.

Sometimes though, even high doses of gabapentin don’t help. For me, the gabapentin helps quite a bit, but I still have significant pain in my feet. As you can imagine, this is limiting when it comes to being able to walk long distances or stand in line. This is a particular problem for my desired cancer comeback trip to Disneyworld and Universal Studio.

My physical therapist recommended CBD oil, but only after saying check with your doctor first. My oncologist said it was a good idea, and couldn’t hurt.

CBD Oil and Neuropathy

I live in Colorado where CBD oil, and marijuana itself are legal. It’s pretty easy to come by, maybe too easy. Both my PT and my doc warned me that CBD oil is not well regulated, and many oils are mostly just oil.

The solution is to buy CBD oil from a dispensary, instead of Amazon, or the back of the grocery store. The catch is that once I got to a marijuana dispensary, the very knowledgeable, and very honest, sales person informed me that to actually penetrate into the nerves and help with neuropathy, I would need higher concentrations than available as “recreational marijuana.” What I needed was “medical marijuana.”

I didn’t realize there was a difference other than licensing and taxes.

Effective CBD Oil and Neuropathy

The salesperson (excuse me, “budtender”) also recommended a tincture of at least 2,000. (I forgot the units). This got me wondering:

  • a) is CBD oil really effective for neuropathy?
  • b) if CBD oil is effective for neuropathy what dose is required?
  • c) is CBD oil not effective for neuropathy?
  • d) if CBD oil is not effective for neuropathy what is?

Like most people my first instinct was to Google. The top several results were dubious at best, composed of phony colleges, institutes, and organizations. Fortunately, the NIH was there to save the day.

The NIH, or National Institute of Health is a government organization that offers actual research studies on numerous topics, including legitimate CBD oil research and real CBD for neuropathy research included. Of course, this result is half way down the page, because the NIH does not spend big money and time on using SEO to rank highly for CBD topics.

Real CBD Oil for Neuropathy Research

One of the results I found was about the effectiveness of topical CBD oil on neuropathy of the lower extremities. In other words, does rubbing CBD oil on your feet help neuropathy pain?

There are two important things this true research about CBD oil for neuropathy in the feet tells us. The first is that yes, it does help neuropathy pain. Second, it tells us what dose they used. Most published research happens after the scientists involved already put some effort into the parameters. In other words, they already had and idea of what does would work for neuropathy of the feet. The does in the study was 250 mg CBD/3 fl. oz.

This means I’m looking for that dosage of CBD oil to be effective on foot neuropathy. Where do you find CBD oil for neuropathy and what does it cost? Most importantly, does CBD oil work for neuropathy from chemo?

I’m getting ready to find out. I’ll let you know.

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.