As with most cancers, and really anything medical, there are a lot of multiple myeloma terms and vocabulary out there that you might not know from the beginning. Getting to know the definition of multiple myeloma terms will help with understanding information about the disease.
What Is Relapsed Multiple Myeloma?
It is often said that there is no cure for multiple myeloma, but it is treatable. At first, this can be confusing. An easy analogy is diabetes. Certain types of diabetes are incurable, but the person can live a normal life with regular insulin injections.
With multiple myeloma the problem is that no matter what treatment you use and not matter how well it works, chance are myeloma will come back at some time in the future. This is what relapsed myeloma means.
Relapsed myeloma means that multiple myeloma has returned. For example, I am currently MRD negative, which means that there is no detectable myeloma in my blood. When (if) my myeloma returns, we say that I have relapsed.
What Is Refractory Multiple Myeloma?
Refractory myeloma means that the myeloma stopped responding or does not respond to a particular treatment. For example, if a patient with multiple myeloma is taking Revlimid and that is working to keep their myeloma number low, but then the patient’s myeloma stops responding to Revlimid, then their myeloma is refractory to Revlimid. It is unlikely the body will ever respond to Revlimid again.
This is where the lines of multiple myeloma treatment comes in. If a patient has done one kind of treatment, but then needs to switch to another, then that is two lines of treatment. The lines of multiple myeloma treatment are important because they determine which treatments a patient can use. Some drugs, or trials are only approved for patients who have already undergone four lines of treatment, or whatever.
Other treatments like CAR-T are approved for relapsed/refractory myeloma, which basically means it can’t be the first treatment a patient tries.
About the Author
Brian is an expert on having 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.
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.
Damn. That hit hard. The nurse re-weighed me. They had to remix my infusion to match my body weight.
Multiple Myeloma Weight Gain
There are lots of ways to gain weight because of multiple myeloma. Dexamethasone is a steroid. If you weren’t using it to cure cancer, you might be using it to gain weight and muscle.
Coming off of a stem cell transplant (SCT), my oncologist warned me that I would basically go back through puberty. Oily skin, acne, improved sex drive… Oh, yeah. Increased appetite.
Eating Too Much Food
There are a lot of things, and I mean a LOT, that I can blame on my new cancer. The weight gain might, kind-of, sort-of, be the cancer’s fault. I did come back with a voracious appetite after spending 90 days after my SCT nervously swallowing single bites and waiting to see if they’d make me feel like throwing up. But, in the end, I’m overweight for the same reason most people are overweight. I ate too much.
The Multiple Myeloma Diet
When I first was diagnosed with multiple myeloma I asked my doc if there was a diet I should be following. After all, at first blush, it looked like someone with myeloma had just 5 to 7 years to live. When you’re only 46 and you’ve got two kids still in school, you need all 7 of those years. I was willing to eat a sucky diet if that would help.
Unfortunately, my doc told me, “You already have cancer. Eat what you want.”
There is no way to get enough iron in your diet to overcome the anemia you get from chemo. The doc told me that the chemotherapy was like dropping atomic bombs on my system. Eating more iron was like passing out umbrellas.
The good news is that myeloma life expectancy can be way longer than 7 years. And getting to eat what you like during those years of life is a good thing too.
Too Many Calories
You can read all the books you want, and check out and follow all the weight loss gurus you like, but in the end, the reality of the human body is that if you put more calories in than you use, it will turn the excess into fat. If you don’t pay enough attention, one day the nurse has you get up on the scale and it says 229. Then she resets it and has you try again because your last weigh in, a few months ago, said 209.
Resetting the scale didn’t help.
It’s not a secret. I’ve noticed that my shirts that used to be loose fitting are now snug. I can’t even button any of my shorts without putting the waist band “under” the fat around my belly. When I bend down to tie my shoes, part of my body that should be separate come into mushing contact.
I’ve gained weight. A lot of weight. It’s embarrassing. It doesn’t feel good. There will be no “Before” pictures.
Losing Weight With Multiple Myeloma
So, here we go. I have to lose weight while taking elotuzumab and dexamethasone, both of which will be fighting my in the other direction.
The good news is that I don’t necessarily need to do anything extreme. I know exactly where my weight gain comes from. I eat out a lot. Sometimes I eat lunch and dinner out.
There are ways to dine out and lose weight. That isn’t how I eat out. When I roll through the drive thru at Arby’s, I eat like I finally made it to the end of a long journey. Not only do I get a roast beef meal, but I get another roast beef sandwich on top of that. When I eat at home, I make one sandwich, and maybe I eat some chips. Even a lot of chips won’t add up to a box of curly fries.
So, eating out less, and not eating late night Oreos.
I don’t know where I picked up this habit, but I like eating Oreos and dunking them in milk at night. If I do it at a regular hour, my family is still awake. My wife is there to judge me. My kids are there to think they need Oreos too.
So, I wait.
After everyone has gone to bed around 10 pm I wander over to the pantry, pull out 8 or 9 Oreos, pour a small glass of milk and enjoy my snack.
Sometimes you deserve something nice, but I was doing this a few times every week. That’s too much.
I mean, that’s 500 calories right before bed. They say that a five hundred calorie a day deficit will cause you to lose a pound a week. I’m sure the reverse is true too.
So, I won’t be going out to eat, and hopefully the number the nurse gets off the scale next week isn’t in the 230s.
If there is one thing that multiple myeloma has beat down on for me it is my physical strength and endurance. I can’t do much of anything without getting winded, and I can’t remember the last time I tried to run.
We’ll start easy: 10,000 steps every day.
It doesn’t sound like a lot, but 10,000 steps is a hearty amount. You can “accidentally” get 7,000 steps by wandering around and doing errands and stuff. You won’t get to 10,000 steps without either a fairly large endeavor, or deliberate intention. Either way is a good way to use up some of those extra calories and build strength and endurance back up.
Here we go.
I’ll keep you updated.
Here is where I’m supposed to tell you how great I’ve done and how well everything worked out. Unfortunately, that’s not what happened. I blew up to 250 lbs. I’m not even sure how it happened.
I joined the local recreation district gym and I’ll be going at least twice a week, so hopefully that helps. The reality is that I don’t want to change my eating too much, so I’m hoping building back some muscle and doing some exercise will be all I need.
I wasn’t going to write this article, but my brain won’t stop writing it in my head whenever I stop moving for a second. So. I’m going to write it, so my brain can do something cooler.
Why The Airport Can Give You Covid
Alright, let’s start with the basics. There are a lot of airports out there. And, some of those airports do a better job with trying to reduce the spread of Covid than others. The smaller and less used an airport is, the better. That being said, they all have very similar problems that make it likely you are going to get Covid if someone there has Covid.
All of the following is doubly true if you fly during a higher demand time like holidays, weekends, and Monday mornings and Friday afternoon/evenings.
More People = More Covid
Math is never wrong. More is more.
You don’t have to be an expert in epidemiology, or understand statistics, to know that the more people there are, the more likely at least one of them has Covid.
Here in Colorado our restaurants are operating at 50% capacity with six-feet between parties. That is actually pretty safe, especially if people are wearing masks when they are up walking around. Six feet turns into zero feet if someone has to walk by your table on the way to the bathroom.
But, it isn’t just the six feet that makes restaurants safer during Covid. Lower capacity means less people. Our local Mexican food joint holds maybe 30 people at 50% capacity. If there is only 30 people, then the odds that one of them has Covid is pretty low, especially when compared to something like 300 people.
If there is no one with Covid, you can’t get Covid, no matter how close people stand to you.
Airports Have Lots of People
Airports have way more than 30 people in them. Sure there is more space, but the odds are still much greater that someone in there has Covid. The only way you can get Covid is if someone has Covid, and it is almost a mathematical certainty that in any airport, there is at least one person somewhere with Covid. – Do you feel lucky? Well do ya?
Does your local airport have just 30 people?
Nope. There are more. Lots more. Even at the smallest airports there are more than 30 people before you even count the passengers.
And that six feet thing?
Airports Are More Crowded
It’s cute that they blocked off some of the seats. Although one airport seat isn’t really six feet across in most cases. It takes three or four airport seats for me to lay across. I’m a couple inches over six feet tall. You do the math.
But it doesn’t matter.
Because, when you go through security you’re going to get close. Really close.
Even if people somehow remember to stay six feet away from you in the security line (they don’t), they won’t think twice about getting right up next to you as you load your carryon bags onto the scanning conveyor belt. And, they’ll stand right behind you as you wait your turn to go into the X-ray, lest someone cut the line.
Oh, and remember one of the X-ray machines is a semi-enclosed tube, that you will walk into seconds after someone else stood in there exhaling. (Probably exhaling more than usual, because people get stressed going through airport security. Oh, and you are probably breathing harder than usual for the same reason, which means inhaling more than usual. You get the point.)
It gets worse. Spacing on escalators and people movers? Nope. People have to wait to get onto those things. When people have to wait, they take their turn as soon as possible. And when they take their turn, they get on right behind others, lest someone else cut them off. Even if you space, the guy behind you won’t.
How about lines for the restaurants? Coming out of the relatively quiet San Diego airport, the line for Einstein Bagels was chest-to-back and 20 people deep. Don’t even look at the small area customers have to stand in to wait for their food. To get everyone six feet apart, you would be too far away to hear your name called when your food was ready.
Boarding Lines Are Never Six Feet Spacing
And when people line up to finally get on the plane, they’ve been waiting for a long time. Expect that line to be front to back, with people trying to cut in as well.
Ever see the lines used to board for a Southwest plane?
They have these pillars where you line up by number. Numbers 11-15 between two poles that are maybe 10 feet apart. That’s 5 people in 10 feet, or two-feet of space per person.
Oh, but it’s worse than that. There are also five people lining up on the other side of those poles as well. That’s another five people in less than 10 feet of space, going sideways. That’s 20 people in a 10×10 area. Good luck getting six-feet each.
It’s not just Southwest. The other airlines don’t officially mark it, but their boarding lines are just as close together once they call everyone seated in Group 2, or whatever. Often it’s worse because it is first come first serve, and you have to stay close together so no one cuts in.
Then, there is the jetway. Spacing? Nope. That would require another employee to stand in the jetway ensuring passenger spacing, and that costs too much money, and takes too many people.
DIA Is Covid Spreading Dream
Some airports are even worse than others.
Does your airport have a train?
A closed-in train?
A train with standard, not-that-great, ventilation? (Know how you can tell? If you can smell someone’s body odor, you can inhale their breath too.)
At Denver’s airport, DIA, you MUST get on that train to get to the concourse. There is no way to walk and avoid the train.
There is a comical sign in the train waiting lobby (which is often filled with people) that says to space out by moving to the middle of the platform, which works great during very limited “off-hours”. Otherwise, there are likely enough people to fill the beginning, middle, and end of the hall by the time a train arrives.
And, that train you are waiting for is going to have a bunch of other people on it with you, because there is no reasonable way to wait for an empty train.
Sure, you could try and wait, and then, after all of the passengers in the waiting area with you get on the train you will be by yourself — for a moment or two. But, over the next three to five minutes that it takes for the next train to arrive, more passengers will arrive too.
You could wait there for hours and never have a chance to get on a train car with less than 10 or 20 people in it, unless you’re lucky enough to be flying very late at night, or maybe very early in the morning (but there are a lot of flights that go out starting at 6 am). Plus, it is the same train for all three concourses. So even if you get on an empty train out on Concourse C, it’s likely a dozen or more people will pour in at Concourse B (and then Concourse A…)
Masks? Oh sure. If they aren’t eating, drinking, talking on the phone… or just don’t feel like it because they’re tired (or jerks).
Your only saving grace is that the train ride only takes five minutes or less.
The Airplane Will Give You Covid Too
Airplanes love to cite that one study that says you should be safe from Covid on an airplane based on a model that assumes EVERYONE WEARS A MASK THROUGHOUT THE FLIGHT.
But, do you know what happens on every flight?
On all flights but the very shortest ones, at some point during the flight, the flight attendants will come down the aisle and ask if you want a drink and hand you a bag of in-flight snacks. And do you know what happens next?
THE ENTIRE AIRPLANE TAKES OFF ALL THEIR MASKS AT THE SAME TIME AND LEAVES THEM OFF FOR SEVERAL MINUTES SO THEY CAN DRINK AND EAT THEIR SNACK.
Remember, it is ok to remove your mask while you are eating or drinking. Some people nurse that Coke for 20 minutes, not wearing the mask the whole time. That would be fine if it was only that person, but it is almost everyone at the same time, including the guy in the middle seat right next to you. You better snarf down that snack and get your mask back up and hope for the best. Better yet, sit there with your mask on for 20 minutes until most of the planE has put their masks back on.
Southwest doesn’t keep middle seats free anymore like they used to. United, Delta, and the others never did. They just said screw it, we need the money, and they put someone in a seat less than one foot away from you.
I’ve been in four airports since the whole Covid thing started. These are my observations, and my opinions. I’m not a scientist, or a doctor. However, all you have to do is look around your airports and you’ll see the same things I saw. Don’t have a ticket? Just go into the airport and start looking around. Head for security. You don’t have to go through it to verify quite a bit of what I said.
Security While Preparing to scan carry on luggage?
How Do I Know?
How do I know all of this? Well… *deep inhale, blurt it all out in one breath*
Last year, Colorado’s Governor shut down the state. It worked. Covid numbers (we were still calling it coronavirus then) dropped like a rock. Hospital ICUs had plenty of space, the graph looked great. I heard stories from friends of mostly empty airports and planes that were less than a third full. I had been locked down longer than most people because I started my lockdown in January because of my stem cell transplant. I was dying to get out. To do SOMETHING. To go SOMEWHERE. Especially before I had to start maintenance mode chemo. I figured this might be my last chance to do something while still mostly healthy. So, I booked a trip to the Outer Banks. Then, just before we left, the numbers started getting worse. The day we got back, they started saying, “third wave.” When I got to the airport I got a pit in my stomach. The airport wasn’t mostly empty after all, and United sent me a text saying that my flight was going to be full too, but you can change it if you want. To when? All the other flights were also fairly full.
“Fairly full,” by the way meant all but a few middle seats were full.
I put my head down and hoped for the best.
Until we flew home.
Shortly thereafter we tested positive for Covid. We almost certainly got it when we flew home based on incubation period. We were by ourselves (beach house, empty beaches) before, during, and after, when we relocked down. That day we flew home was the only time we were out of our bubble that corresponded to symptoms. I can’t prove that is how we got it, but anyone can go to an airport and prove that the safety of spacing is nonexistent. If you can on a plane you can verify the rest of what I said is true as well.
The rest of the family, ironically, tested positive for Covid antibodies a few weeks later even though none of us got very sick. So, when we flew again this Spring, we did so with an ace behind each of our facemasks, antibodies. This time, I saw all the same Covid issues, but it was even more crowded. The trains were fuller, the sit-down restaurants were spaced, but all the carry away places had un-spaced lines, and those passengers took their food to the gate area where they took off their masks and ate it.
Vaccines for the Win
Do what you want, just know what the reality is.
The truth is that it’s over. The vaccines are here and millions already have them. Every vaccinated person is a person who “doesn’t count” when it comes to spacing or wearing a mask. That doesn’t mean you shouldn’t wear one, just that if you take it down to drink your Diet Coke, no one will get Covid from you.
But, in another way, that makes the risk so much worse. How much would it suck to get Covid now that you are less than a few weeks away from a vaccine? How much worse is it for someone to die of Covid now when the numbers will be plummeting by summer?
Unless you’re vaccinated, or have antibodies, I’d stay away from air travel for another month or two. After that, you don’t have to worry about being one of those bummer stories about catching Covid right at the end.
If you’ve been reading the news, you know that the Covid vaccine rollout has had its share of problems. You also probably have seen that virtually all states have come up with a tier system that tries to get the Covid vaccine to the most vulnerable people the fastest.
Cancer patients count as vulnerable in most of those systems.
What Tier is Multiple Myeloma for Covid Vaccine?
While the tiers are not the same across all of the states, most states have set Tier 1 as health care professionals that work directly with Covid patients, as well as various first responders that potentially come into contact with Covid victims. Obviously, this tier would not include multiple myeloma patients.
However, the second tier, or Tier 2, in most Covid vaccine rollouts include patients who are immunocompromised. Multiple myeloma patients should fall into this tier. Myeloma is a disease of an important component of the immune system, after all. That being said, there can be a lot of interpretation between who is immunocompromised, and who is more immunocompromised than those suffering from other aliments or diseases.
It is also important to understand that the availability of the vaccine plays a role in when I will receive the Covid vaccine as a multiple myeloma patient.
In my individual case, my oncologist has informed me that I will get a message directly from the hospital system that I got my SCT from. The bone marrow transplant unit there has a database of immunocompromised patients. As one of the largest hospital systems in the state, much of the vaccine supply comes in through their doors, especially the Pfizer vaccine due to its difficult refrigeration requirements. And, finally, as one of the largest facilities in that hospital system… well, you get the idea.
My oncologist thinks that I will likely get vaccinated in February, but to keep an eye on my health care portal messages starting now.
The trick to a quick vaccine rollout is that you have to keep moving forward instead of getting caught in bottlenecks like finding and contacting immune compromised patients. As a result, while the state is figuring out how to find and contact multiple myeloma patients in more rural areas, my BMT group will be reaching out and vaccinating us. I suppose this is another reason that all things being equal, you want to be near the research if you have cancer — a university-affiliate hospital is probably the best unless you live near one of the major cancer centers like Anderson, or Mayo.
Multiple Myeloma and Covid Vaccine
All three of the Covid vaccines approved for emergency use by the FDA are non-live vaccines. That is, the material in the vaccine is not weakened virus like the MMR vaccine is, so it cannot give you coronavirus, no matter how weak your immune system is. (If your immune system is too weak, however, it won’t mount a response which means the vaccine will be wasted. They might not give it to you right after ASCT, or even some chemo if your immune system is knocked too far down.) If the Covid was a live vaccine, they probably would not give it to myeloma patients at all, or at least not until they had studied it in the strongest of us.
These mRNA vaccines are actually a great advancement, and might prove useful for other future vaccines as well, which would be great for us myeloma patients.
Vaccine Covid Antibodies and Multiple Myeloma
One of the most interesting facets of getting the Covid vaccine with multiple myeloma for me is that I have already tested positive for antibodies to coronavirus despite never having actually developed any Covid symptoms. (Lucky, right?)
The oncology team still wants me, and all of the multiple myeloma patients who had Covid, vaccinated anyway. And, for bonus fun, they’ll be monitoring our blood draws to see if, how, and when people with multiple myeloma mount a response to the Covid vaccine.
So, while cancer patients like us won’t be skipping the Covid vaccine line, we won’t be at the end either, which is a nice change from last year, when we were put at the bottom of people to treat if there was ever a need to triage Covid care.
Covid Vaccine Reactions Multiple Myeloma
If you get the Covid vaccine and you have multiple myeloma, let us know how it goes. So far, the people I know that did get it report fevers, sweats, and pains, ironically, kind of like getting the flu. But, it only lasts for one or two days. The fevers are so common, that my doc even said if I got a fever after taking the Covid vaccine to just take Tylenol and get some rest, not call in like I’m usually supposed to if my temperature ever goes over 100.4 degrees.
Welcome to the post-Covid age, my myeloma friends.
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.
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.
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.
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.