It’s been two years since I was diagnosed with multiple myeloma. It has tried to kill me twice. The second time caused my oncologist to parse his words very carefully in front of me, “That was… that was a save. Mucor is usually fatal.”
I should feel lucky. – I do.
I should be happy to be alive. – I am.
Is It Anger Still
Apparently I’m angry. I’ve only just noticed, my wife is astonished I haven’t been aware for quite some time.
Anyway, my biggest problem is that cancer makes me angry. Not just my cancer, and not just cancer the disease, but everything that has anything to do with cancer. I get mad when someone is on TV, “He had stage 73 super cancer, but now he runs marathons for babies.”
Fuck that guy.
I saw a tweet about a useful resource in Conquer Magazine. I’ve never heard of Conquer Magazine, but my first thought was, “Fuck this. They suck.” Then, I judged their covers and decided they were too Journal or McCalls. It’s actually a well done magazine that tries to be a resource for cancer survivors and patients.
(I’m also angry that I’m not technically a cancer survivor since myeloma always comes back. I’m in remission, but it’s only a matter of time. I guess I’m a cancer pauser, or something.)
The resource came from Takeda Oncology. Yeah. I had crummy thoughts about them too, especially when I found out they make Velcade. I blame Velcade for some of my neuropathy.
Then I hated their color-coded chart.
All of these people were just trying to be helpful. (I can’t give full credit to Takeda. They charge obscene prices for their drugs like all companies that make drugs you need to keep living do. — It’s evil, frankly. Pure evil. — But, this chart wasn’t evil.)
I ranted on Twitter.
And then I came here. I might delete this later, but it’s important to know that even when you are in remission there can be negatives. Plus I haven’t updated here in a long time, so… here’s a freebie update.
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.
This is one of those things that I’m going to put into a nice graphic when I have the time. For now, hopefully this table proves useful as a thesaurus of myeloma drugs, and their brand names vs generic drug names.
Myelo – A prefix meaning marrow or of the spine
Myeloma – a tumor of plasma cells, usually in the bone marrow or spine
Multiple Myeloma – same as myeloma – since myeloma technically means ONE tumor of plasma cells, multiple myeloma relays that there are usually more than one tumor of plasma cells
dexamethasone – steroid commonly used in treatment of myeloma. Used both to interfere with fast growing cells (cancer cells) and to reduce or block allergic reactions to other treatments – this is why you can’t sleep
Selinexor – treatment drug that blocks cellular export of proteins involved in cancer-cell growth (newish – approved 2019) – Approved to be used with bortezomib and dexamethasone (in place of Revlimid)
Revlimid – brand name for lenalidomide – part of the RVd (Revlimid, Velcade, dexamthasone standard induction treatment cocktail) – This is why you have fatigue.
Velcade – brand name for bortezomib – the V in RVd – this is why your hands and/or feet hurt (neuropathy) also fatigue
inductionor induction therapy – the first in a series of treatments, like being inducted into the club, only the club sucks, it’s a cancer club. For multiple myeloma patients, induction is usually taking chemotherapy pills for a while with the goal of reducing (eliminating) the amount of cancer in the body and reduce (eliminate) tumors caused by multiple myeloma. Induction therapy comes before stem cell transplant (ASCT) if your treatment includes a transplant.
ASCT – autologous stem cell transplant – a stem cell transplant that uses your own stem cells (as opposed to getting stem cells from a donor) – usually a treatment for those under 70 and in good health
melphalan – the drug they give you at the beginning of ASCT that destroys your immune system – may be used as an ongoing treatment at a much lower dosage
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.