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.
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:
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.
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.
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 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.
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).
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.
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
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.
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!
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.
Cancer is a tough beat. That being said, for the most part, I tend to keep my spirits up. Unfortunately, a large part of that relies on the optimistic belief that I’ll “get my life back,” somewhere in the future.
Cancer and Optimism
The truth is that I’ve spend most of the year-plus since my diagnosis weaker, and sicker than I have ever been in the past. The pain from the neuropathy in my feet doesn’t really seem to be going away. And, the cracks in that optimism start to appear.
Even before cancer, I found that it is all too easy to look up. The house that you want that is a little bit bigger, has a library, and pool in the backyard. The job that offers more money, more respect, and paid trips to the coolest conferences. And so on.
While looking ahead to these things is meaningfully motivating, it is also important to acknowledge what you’ve already achieved.
The house on the quiet street with a nice-sized bedroom for each kid. The job that allows you to work from home while you have to juggle doctor’s appointments and bouts of sickness. The solid life insurance and paycheck that covers all of your bills and a little bit of fun.
The fact that your back no longer hurts so badly you can barely stand.
The fact that you can throw the ball to your son while he still wants you to.
The fact that you can be clever and interesting to your teenage daughter… at least in short bursts.
A loving spouse that may be one of the best caregivers of all time.
No Going Back
And, so while it is entirely possible that I won’t ever get my old life back, the reality is that the one I have is pretty wonderful in so many ways. I’m glad to be here, and I’m glad to keep soldiering on.
And, if it turns out I get “back” to whatever I had before, I’ll be sure to be grateful instead of automatically looking ahead. After all, there are always mountains that I could have climbed, 5Ks that I could have ran, and exotic places left to visit.
Health care in America is dumb. Anyone who says differently is peddling political talking points. Still, in America these days, all that matters is “winning” against the other party, and on talk shows, and Twitter. That means taking care of actual Americans falls pretty far down the list, which brings us to today’s topic.
Cancer Health Insurance and the US Election
Hi. My name is Brian. I’m a real person. I’m a real American. Not that it really matters, but I was born here, right in the middle. I’m from Colorado. My dad, and his dad, and his dad (you get the idea) served in the military.
When the leaders of this country talk about health care and health insurance, they should be talking about what is best for me. They don’t. They talk about what is best for their party.
Here’s the deal. If you want to talk about what is, and what should be, there are places for that. Here, I have cancer, right now, today, in America. The only thing that matter is what is.
So, how does the election affect Cancer health care in America?
Health Care and Cancer and New Politicians in Washington
I know what you constantly see on Twitter, and maybe even on the news about health care in America. Believe it or not, I’m actually one of the Americans for whom the current system works just fine. Unfortunately, I can’t really take any credit a lot of it is luck, and any one of several changes would bankrupt, and then kill me.
As a white color worker, I’ve always had some sort of employer sponsored health care. In America, the best health plans come from employers. That’s dumb, but that’s the way it is.
Luckily, my wife is also a white color worker with a better, higher paying job than me. (I run my own business.) So we are on her health plan. We pay a reasonable monthly premium for family coverage.
When you have cancer, the only thing that matters is the Out of Pocket Maximum. I see people all the time complain about how their plan “doesn’t cover anything,” because they haven’t hit their deductible yet. That isn’t my world anymore.
During the first couple of days of the new plan year, I had a daratumumab infusion. With that comes administered dexamethasone and four hours in a transfusion chair. The cost of that one day started at 100% out of pocket, then hit my deductible and was covered at 80%, before smashing through my annual out of pocket maximum. The rest of my health care for the year is “free.”
When I got sick, I stopped working. Since we were on my wife’s health insurance, that didn’t affect my care. If you seriously think that your boss determining what kind of health care you have is a good system, you are wrong. Don’t bother commenting. The only reason you think differently is because you care more about your “team” winning than you care about what is smart, and makes sense.
Pre-existing Conditions and Cancer
You would think my biggest concern would be the whole pre-exisiting conditions thing. That is a big concern. Fortunately for me, even the previous law worked such that if you had “continuous” health coverage for six months, then your new insurance had to cover your pre-existing condition.
For anyone else with cancer, not covering pre-existing conditions is a death sentence.
Forget those people who say you can always get care at an emergency room. For people with cancer that’s too late. If I’m in the emergency room with out of control light chains and tumors, there is no emergency treatment that will help. I’ll be dead soon. Even if they could save me, without ongoing non-emergency treatment, I’d be back in a few months.
I would hope that there would be enough compassion — even in Washington — that no one would consider not covering pre-existing conditions, but that just isn’t the case. You see, the other “team” passed the law that makes insurance companies cover pre-existing conditions, and therefore, it is bad. People who need care don’t matter as much as beating the other team.
Lifetime Maximums and Cancer
What I’m really afraid of are lifetime maximums. Remember how I told you about blowing through my out-of-pocket maximum in one day? How long do you think it would take me to crush through a lifetime maximum?
It would be even easier to sail through an annual maximum.
I have multiple myeloma. It is a blood cancer that weakens the immune system. So, why am I flying across the country to spend a week on a beach on the Outer Banks of North Carolina? Because time marches on.
My kids are getting older. One of them will be leaving the house soon. I DO have cancer, which means that none of my days are promised to me, even more so than they are not promised to you.
Covid sucks, but with proper precautions, the spread appears to be slowing. My oncologist says to get an N95 mask if I can (it looks tricky) and to wear gloves on the airplane (will do).
Besides, I’ve been on lockdown longer than most anyone. I had my stem cell transplant in January and they told me not to leave the house for three months back then. — Plus I was throwing up all the time so I wasn’t really up for it anyway.
Long story, made short, I’ve been on mostly lockdown since January while most of you didn’t start until March.
Does that make me special?
Does that mean that Covid will leave me alone?
What it does mean is that I’m willing to risk certain death against taking all the proper precautions. Hopefully, all goes well and my quarantine will, for at least a week, be a sweet day at the beach.
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.
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?
Alpha-lipoic acid helps with neuropathy according to studies.
Chemotherapy-induced peripheral neuropathy (CIPN) is a frequent side effect in cancer patients. For multiple myeloma, Velcade is a primary cause of neuropathy for patients receiving the traditional triplet cocktail of Revlimid, Velcade, and dexamethasone. Neuropathy from stem cell transplants is also common in multiple myeloma patients. In this case, stemming from the powerful dose of melphalan, or other chemo used to kill off the immune system as part of ASCT.
Peripheral neuropathy manifests in many different ways. For me, the Velcade caused increasing pain in my fingertips, and then hands, before I basically insisted they stop giving it to me. The melphalan, on the other hand, has given me neuropathic pain in my feet since my transplant.
A 1999 study suggested that alpha lipoic acid (ALA), which is a natural antioxidant, helped patients with diabetic neuropathy.
Diabetic neuropathy is different in some ways that CIPN. But, a different 1998 study suggested that did work for CIPN that was not from patients treated with Taxane. (Melphalan is not Taxane)
On the other hand, this 2020 study review says that there isn’t a lot of evidence for ALA being effective for CIPN. What it does say is that glutamine and omega-3 fatty acids were potentially effective treatments.
A lot of people in the multiple myeloma community swear by it, and not all CIPN is equal. Studies show that the neurotoxicity caused by oxaliplatin and cisplatin are not responsive to ALA. But, I never used any of those. Those are both for treating non-myeloma cancers.
Ideally, I would like to see more recent studies with more positive results, but they just aren’t out there. Fortunately, ALA is easy to find and not expensive. If it doesn’t work for me. I will just stop taking it. But, if it does, then maybe I won’t have to try so hard to get the right dose of pregabalin for myself.
A lot of multiple myeloma patients will experience neuropathy. Peripheral neuropathy (peripheral just means at the extremities like your hands and feet) is caused by chemotherapy for myeloma patients.
Velcade is one of the main neuropathy culprits for myeloma patients. Another is the melphalan used for stem cell transplants in treading multiple myeloma.
If you are in pain, or the numbness has gotten out of hand, do not stay silent. There are neuropathy prescriptions your doctor can give you.
The catch is that not everyone has the same neuropathy, and not everyone responds the same to each medicine. That means that you might have to try a few different neuropathy medicines and doses before you find the right combination for you.
Unfortunately, there is no cure for neuropathy, and the treatments can be iffy. That doesn’t mean that there is nothing that can be done.
Originally, I was prescribed Gabapentin. Keep your doctor up to date on how you are feeling. As it turns out, you can go up to pretty high doses of gabapentin, so long as your body will tolerate it. So, if you are still in pain, tell your doctor. If they don’t offer, specifically ask about increasing your dosage.
Your oncologist’s job is to keep you alive. You are responsible for the quality of that life.
Over time, I seem to have gotten all of the relief I could from gabapentin. It felt like the gabapentin stopped working for me, although I’m sure the reality is that I would have been much worse off without any. Either way, I wanted to get more improvement.
Pregabalin is the generic name for Lyrica. Unfortunately, Lyrica is still under patent. That means it is expensive. For this reason, your doctor will likely look to this as a treatment last, even though it may work better for many myeloma patients.
Your oncologist will have you step up your dosage over time for two reasons. One, is to ensure that you tolerate the medication. You don’t want pills making you worse. Myeloma already gives you plenty to worry about.
The second reason is to get an idea of what the minimum dose is that works for you. For me, the best dosage seems to be 400 mg per day.
Neuropathy Medication Costs
Gabapentin is generic, so your insurance should cover it. If not, it shouldn’t be too crazy.
Pregabalin is another story. Lyrica is still under patent. That means it is pricey. I have pretty good insurance and most of my medications are actually free because I hit my annual out-of-pocket-maximum already. That does not mean I get to go around the insurance policy limits though.
My insurance plan only covers 300 mg per day of pregabalin. My doc tried to get them to allow me to have 400 mg per day because that is what works form. This is successful more often than you might think, but in this case, apparently that is not what is says on the medication’s “label” and it also is not in some book, or prescribing manual, so they will only pay for 300 mg per day.
Unfortunately, that leaves me short 30, 100mg pills per month. At my usual CVS pharmacy that costs an extra $111. I’m not looking to get into another $1200 per year of medical expenses.
I have a plan to try and get around it. We’ll have to see how it works out.
GoodRx Myeloma and Cancer
I have seen ads for GoodRx and my research makes it seem as though GoodRx is legit. According to the website, I could get the extra pregabalin I need at another pharmacy with a GoodRx coupon for a very reasonable cost. So, theoretically, all I need a prescription with no insurance information and the GoodRx app coupon, and I could get it for like $20.
I am having my doc’s office crank out the extra prescription and I will keep you posted about how it works out.
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.
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.
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.
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.