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.
It’s as scary as a word gets. For millions of Americans it’s one of those things that happens to other people. There is maybe a friend or a family member, maybe a friend of friend with cancer, or maybe just someone you heard about that one time at your company or on Facebook.
Until 2019, I was one of them.
Not a lot of people have heard of multiple myeloma. That’s not surprising. It is considered a “rare” cancer. In 2018, approximately 125,000 people were living with myeloma in the United States. That might sound like a lot, but consider that there are 327 million people living in the U.S. and that percentage looks pretty small.
Or, if you want to compare multiple myeloma to more common cancers, consider that 268,000 new cases of breast cancers will be diagnosed this year alone. That’s more than the total ongoing cases of myeloma. Multiple myeloma’s closest, more famous, cousin is Leukemia, with 200,00 new cases diagnosed in the United States each year.
Getting Rare Cancer
Not only is multiple myeloma a rare cancer, it is most frequently diagnosed in people aged 65-74 years old. So, imagine how “lucky” you have to get to be diagnosed with multiple myeloma at age 45.
Yeah. I’d have rather gone to Vegas, thanks.
Why Another Website
So, what is the point of this whole thing?
Well, I’m a writer. I always have been. It’s my way of talking and actually getting to say what I mean to say. Also, I build websites. What’s one more?
Most importantly, writing can be therapeutic. I find that such writing is more therapeutic when I put it “out there.” Whether anyone ever finds it and reads it, or not is irrelevant. The fact that I publish what I think, write, and feel, is similar to actually talking to someone for me.
And, if you see one of these in the literature holders at your oncologist’s office, or at the hospital, I highly recommend picking one up. It’s called the Multiple Myeloma guidelines for patients.
It’s nice to be able to thumb through a book when you’re brain is filled with a fog of worry and fear. (The same thing is available online at NCCN.org/patients.) You’ll have to click on that “more cancers” button in order to find the multiple myeloma one though. Might as well start getting used to it, this is an”other” cancer.
However, when you write advice like that for a broad audience you have to careful to not be too specific lest you write something that does not apply to everyone. One of the most frustrating things about multiple myeloma is constantly being told that everyone is different, so no one will really give you any answers.
It is true of course. Everyone is different. Not only that, there are a ton of different kinds of multiple myeloma characterized by which genes are mutated and what kind of light chains you have, and so on. And, that’s all before you account for the fact that it will affect younger people differently than older people. That some people tolerate treatment very well, while others don’t tolerate it at all. Still others respond well to some things while others don’t.
The purpose of this website then will be to provide MY experience and MY discoveries that I make about MY multiple myeloma along the way. Such specific, real world, understand of what it is like to actually have multiple myeloma is incredibly useful, even if not everything applies to your specific case. As such, I hope to provide a myeloma resource that I wish I would have found back when I was first diagnosed, and frankly, ever since.
It will take a while. I’ve been “meaning” to start writing this site for almost six months now, but one of the things that MM does is rob you of time. Between doctor appointments, fatigue, medication side effects, and mental stress getting to things like extra projects can be tough. The good news is that I’ve got ideas, and now I’ve got it started. That means it will come easier and faster now.