Categories
Multiple Myeloma Insurance

Health Insurance and Cancer

I’ve wanted to write about how health insurance works when you have cancer for a while now, but haven’t really gotten around to it. But, here we go. How to deal with health insurance when you have cancer.

Cancer Claims with Health Insurance

First off, you really, really need health insurance if you have cancer. If you don’t there are grants, and copay assistance and stuff like that. You will need to pursue that at every turn.

If you do have health insurance, what you want to look up is what your “out of pocket maximum” is. As a cancer patient this is really the only number that matters. Sure, there is the deductible, but unless you are far enough into your treatment that you aren’t getting chemo or infusions, you’ll blow through that number so fast you won’t even notice you hit it.

One treatment can cost tens of thousands of dollars which will put you over the out of pocket maximum. In fact, if you’re lucky, a big treatment will get billed first to your health insurance so that you only have to pay one bill for one place.

After you hit your out of pocket maximum, it all gets real civilized.

None of these numbers are real, of course. This is all a game where the hospital bills enormous amounts so that when the insurance company takes its “discount” they still get paid the right amount. Then, the hospital turns around and negotiates its own discounts with the drug companies so that they don’t pay as much as is billed. It’s basically a big circle where companies exchange huge amounts of money while ending up with more “normal” amounts of money.

The good news is that once you meet your out of pocket maximum you get free healthcare for the rest of the year. So, basically, in exchange for your premium payments plus whatever the out of pocket maximum is, you get the healthcare everyone dreams of. Great doctors, cutting edge treatments, and top of the line facilities, all for free.

Paying the Right Bills

You don’t want to get stuck trying to get money back from medical providers and facilities, so watch your bills and your insurance carefully. Once you hit your out of pocket maximum, go back through your health insurance bills or website and figure out who they did NOT pay. Those are the bills you need to pay.

The bills they already paid you put aside. Don’t forget about them though. Some offices and labs don’t do a very good job of reconciling and they will continue to bill you even though the insurance paid. When that happens, call them and let them know that according to your Explanation of Benefits (EOB) your health insurance already paid.

They will likely say they need to research it. Let them. They usually figure it out. If not, keep it up. You don’t want to pay someone twice (once through insurance and once from your own checkbook.)

How To Figure Out Who To Pay

Figuring out which bills you actually need to pay and which bills were paid by your insurance company isn’t as easy as it sounds. Basically, you need to go through your EOBs and find the ones that have a “patient responsibility” that isn’t zero.

Then, download those EOBs, compare them to the bills you have, and also compare them to the amounts you expect to pay.

For example, my insurance pays nothing for the first $3,000 (deductible). From $3,000 to $7,000, the insurance company pays 80% (80/20 copay). Above $7,000 the insurance company pays everything or 100% (out of pocket maximum)

Once you have everything reconciled, you can start mailing out checks. Keep track you MAY be able to deduct some of your medical expenses on your taxes. You also may have a Health Savings Account or Flexible Spending Account that need proper documentation.

Categories
Multiple Myeloma

Should Myeloma Patients Get a Third Covid Shot?

Here is the short, short version, copied from my Twitter feed at @arcticllama until I get time to bang out a long version.

Remember, I am NOT a doctor. I’m a myeloma patient that keeps up to date on my own care. I suggest you do the same. Consult your own doctor before undertaking any new or changed medical care. Don’t even try and blame me. This article, and all others on this website are for informational purposes only.

Third Covid Booster for Multiple Myeloma Patients

Israel got out in front of everyone with vaccines. We should be listening to them. The CDC has re-entrenched itself in bureaucracy.

Health Ministry: Most cancer patients should not get third COVID booster shot via @timesofisrael

Health Ministry: Most cancer patients should not get third COVID booster shot | The Times of Israel

With vaccine doses sitting around waiting to be used in America, you should feel no guilt about getting third booster shot of the Covid vaccine, especially if Delta is as bad as the CDC keeps saying. (If you still need a mask, then you need another vaccine.)

Just say you haven’t been vaccinated yet. Give them a fake address and then keep that third card. Done and done. When the CDC finally gets off the pot, you can use the “extra” card as your proof. – Of course, ask your doctor first. Don’t try and sue me.

BTW, as a multiple myeloma patient I already do something similar to this every year. You see studies show a benefit to getting a flu shot booster for myeloma patients. My oncologist recommends that I get that second flu shot.

Insurance won’t pay for it, so I get one with my oncologist, and roll into CVS a month later for the second and pay cash. Fortunately, none of the drug company’s got their talons in the flu shot well enough to charge outrageous monopoly prices, so it usually just costs me something like $40.

That isn’t a CDC thing either, which is why insurance won’t pay for it. It will be years before anyone bothers to do enough research and publish it before the CDC recommends a second flu shot for multiple patients. That doesn’t mean it isn’t good medical advice. Check with your oncologist about this too.

The author is not a doctor. He is a multiple myeloma patient closely involved in his own care. Nothing in this article, nor any article on this website should be construed as medical advice. Consult your own physician and health care team before undertaking any change in your medical care.

Categories
Living with Myeloma

Neuropathy Sucks

My neuropathy sucks today. Feet all tingly.

neuropathy feet

That is all.

Well Not Really

I’ll write later, but the wife has some honey-dos for this find Sunday, and the summer is ending faster than I’d like, so I ain’t even putting up a fight.

Categories
Multiple Myeloma Treatment

Generic Revlimid

Generic Revlamid, or generic lenalidomide is coming, but it may not help as much as cancer patients would hope.

Revlimid is the brand name for the drug lenalidomide. Revlimid is a key drug for the the treatment of multiple myeloma. Until recently, Revlimid was produced by Celgene. However, Bristol Myers Squibb spent over $70 billion purchasing Celgene, in no small part for the billions of dollars it earns selling Revlimid for over $10,000 per month to each cancer patient that requires it.

Thankfully, Americans with insurance don’t have to pay those prices, but it does mean that insurance companies are paying enormous expenses which then cause it to raise rates.

Revlimid Patents Keep Prices Sky High

Revlimid prices are so high that members of Congress singled out the company for its outrageous charges. Of course, pharmaceutical executives are happy to sit stone faced in front of Congress member who will actually do nothing, and don’t have the votes to pass any sort of law that would do anything, if it means they can earn $3 billion per quarter selling Revlimid at those prices.

The only hope for cancer patients is the entry of generic drugs. That was mostly quashed last year when the patent office refused to invalidate three patents that keep generics out of the market.

multiple myeloma prescriptions generic Revlimid cancer drugs

Generic Lenalidomide Will Be Very Limited in 2022

Thanks to that PTO decision, Celgene, and now Bristol-Myers, which bought Celgene last year, were able to drive favorable settlements with generic manufacturers. No generic lenalidomide/generic Revlimid will be sold in the U.S. in 2021.

So far, there are three generic makers who will begin production of generic Revlimid next year in 2022. Each one is limited to production of single-digit percentages of the overall production of Revlimid. That means that generic lenalidomide will be limited to probably 20% of so of the overall market.

That means that either generics will be hard to find, or that they will sell out quickly, running out early in the year.

The silver-lining, is that all three company’s production limits increase each year until 2026, when the caps are removed and generics can actually fill the market and, at long last lower prices for Revlimid.

Categories
Multiple Myeloma Treatment

Best Multiple Myeloma Specialists Doctors

OK. You’ve been diagnosed with multiple myeloma. Chances are you got thrown to a random multiple myeloma doctor for your myeloma diagnosis. But, now you’re thinking, “how do I know you have the right myeloma doctor for me?”

Multiple Myeloma Doctors Near Me

Unfortunately, you may be limited to the best multiple myeloma specialists near me in your area. In smaller towns or rural areas you may not have a lot of choice for the best myeloma doctors. It is important to have a multiple myeloma specialist running your care, even if they are far away and coordinating care with a local doctor. The world of myeloma runs pretty fast, with lots of new research, and new treatments every year.

For new myeloma patients in larger areas and bigger cities you may have a choice between several top multiple myeloma doctors. In this case, you need to know which of the top multiple myeloma specialists is for you.

best multiple myeloma specialists doctors

Best Multiple Myeloma Doctors Criteria

The number one criteria for a multiple myeloma doctor is that you feel comfortable with them, and their whole office.

It isn’t enough to like your multiple myeloma specialist. You need to feel comfortable and well served by the entire operation. I started with a private, well-regarded multiple myeloma specialist in Denver, Colorado. I liked my multiple myeloma specialist. I liked the multiple myeloma PA. I liked the receptionists. I liked the nurses in the blood infusion center.

I hated the nurse assigned to answer questions on the phone. Although I always got a call back within 24 hours, he frankly always seemed annoyed when I called. He felt more like a gate-keeper for the doctor than as an asset for my care.

Ironically, I felt I got much better, more receptive care at the big, seemingly faceless, hospital with terrible parking, and a long walk to the back of the cancer center building for appointments than I got at the smaller private cancer practice. This way particularly important when things related to, but not exactly part of, my multiple myeloma went wrong and I ended up in the hospital for emergency surgery on a mucor infection.

I often wonder if I had stayed with my old cancer center docs, and called that nurse if he would have pushed me off to tomorrow, or the next day, or even the next week. My care was a matter of hours thing. Another day, and I might have lost bone structure in my face, or even my eye. Another two or three days, and it might have reached my brain and actually killed me.

That is dramatic, but you MUST feel comfortable with your multiple myeloma doctors, or it doesn’t matter that they are ranked the best multiple myeloma specialists in your area.

Top Myeloma Doctors Are Up To Date on Research and Care

Maybe not everyone can, or does, read about multiple myeloma research, but I do. (You can just follow me here and I’ll keep you updated 🙂

All the time.

It helps me cope with my cancer diagnosis when I can see all of the new treatments, protocols, and experimental myeloma trials out there, even if I’m not ready for any of them yet. You feel better about living to the cure if you know there are a lot of treatment steps left to get you there.

What really bothers me though, is that I feel like I was getting last decade’s care at the original, high-ranked, cancer center. It is the difference between getting the settled, no debate care, and the care supported by the latest research.

For example, I was getting twice a week velcade shots at my original cancer center. Research shows that twice a week isn’t necessarily more effective, but definitely more toxic. At the least, we should have started on once per week and moved up if my myeloma didn’t respond. Instead, I developed terrible, painful, neuropathy in my hands. All they did each month at my visits was type in that I had pain in my hands. No solutions. (There is gabapentin, lyrica, others… I was never offered anything.)

It wasn’t until I was on the brink of tears explaining my hands that they finally moved to stop the Velcade and move me toward a stem cell transplant. Based on reading the myeloma specialist who would become my new doctor, I may have not needed a transplant just then if my care had been managed differently.

Today, I read this research report from 2009 showing that low-dose dexamethasone is just as effective but less toxic than high-dose dexamethasone. As I read the report, I recognized my dex treatment regime… it was the high-dose one!

The short version of the main criteria to find the best multiple myeloma specialists and doctors is to be close to the research. The doctors at the research hospital are more likely to move forward with more modern regimes of care, rather than the don’t-sue-me practice of standard, middle of the road, heading toward out dated care.

Multiple Myeloma Second Opinions

No matter how great multiple myeloma doctor you had do not be afraid to get second opinions. Do not be afraid to ask about research, or what you read on Google. Your doctor should welcome questions about your care. If they are just trying to get you out the door to stay on schedule, you have the wrong myeloma doctor.

Remember, your oncologist is responsible for keeping you alive. You are responsible for keeping that life as great as it can be. If the velcade hurts your hands, there are options. Ask about them.

Other important steps in your care that you may want second opinions for, or just your questions taking seriously and answered thoughtfully.

  • Stem Cell Transplant – This is a big one. It is an important step in many patient’s care, but it doesn’t have to be the first (or next) move. Ask questions. See if there are options. Recovery can be long. You have to be ready to fight. You might not need it now with all of the new drug regimens. Ask about adding daratumumab to your care. It may tip the scales in your favor.
  • Pain – Multiple myeloma does not hurt. All the things that multiple myeloma causes in the body are what hurt. Even though pain won’t kill you, our oncologist should take your pain seriously. Kyphoplasty instantly changed my world from one of non-stop, debilitating, spine pine to moving around and leading a normal, if fatigued, life. Neuropathy should be managed and cared about. No matter how top ranked multiple myeloma doctor you have, if they don’t care about your pain, move on.
  • New Research, New Drugs – Ask about CAR-T, or daratumumab, or other multiple myeloma treatments and research you read about. They might not be right for your care. Find out why. For example, even though CAR-T is a great new multiple myeloma treatment, I currently am MRD-. There is no point to use CAR-T on myeloma that is not detectable in my body. (Although we are slowly buliding up Emplicity / elotuzumab with Pomalyst to make sure it never comes back. — I’ve already been in the hospital a lot with complications. My oncologist isn’t taking any chances.)

Not-For-Profit Healthcare

I haven’t done enough research on this, but early on in my stem cell transplant process, the doc at the hospital made a joke that if I went to a for-profit hospital that I would have walked out with TWO stem cell transplants.

It turns out that the facility he works for is a “not for profit” hospital. That’s not the same as non-profit, but it does mean there are no shareholders clamoring for better quarterly results.

You might want to see if you can get similar care from that kind of arrangement. It’s nice to know you are more than a dollar sign walking through the door.

Most Important Multiple Myeloma Specialist Doctor Criteria

Use your gut.

Do your research.

Listen to your friends and loved ones. Find groups of other multiple myeloma patients, ask what they are doing. There is a big Facebook group that I’m part of that helps me. Ask about the doctors they have. Chances are you can’t have the same doc (unless you live in the same place) but you can find out what a good doc feels like.

Most importantly, make sure your myeloma doctor cares.

These oncologists are often quirky, and don’t have the smoothest bedside manner. They are brilliant minds, they often come with quirks of brilliance, but it should feel like they care about more than just keeping you alive. Mine feels like borderline Rain Man, but he also always cares, always listens, and even if he scoots his stool closer and closer as he talks, he is always making sure I understand my care and why it is the best he can offer.

Your doc should feel like they want you alive. They should feel like they want you better. They should feel like you are getting care tailored to your illness. If you don’t feel these things, look for a top multiple myeloma doctor that make you feel them

Multiple Myeloma Books

Tom Brokaw has multiple myeloma. He wrote a book about his myeloma journey. The Tom Brokaw multiple myeloma book is a good read if you don’t want to feel so alone. He also makes it very clear that you are responsible for your care. He talks about he had to fight to make his priorities the priorities of his care. If you want to keep working as a journalist, your myeloma care has to be tailored to your life. Your care should be tailored to your life too.

I wouldn’t say everyone with multiple myeloma should read this book, but if you are going to read books about multiple myeloma and myeloma care, this is a good one to start with.

Categories
Living with Myeloma

229 lbs

Damn. That hit hard. The nurse re-weighed me. They had to remix my infusion to match my body weight.

Ouch.

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.”

Check out my Stash review and look at Acorns

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.

myeloma weight gain scale

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.

Exercise

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.

Update

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.

Good luck to you all. Brian out.

Categories
Multiple Myeloma Treatment

My Elotuzumab Regimen

My Myeloma History

For those of you who haven’t followed along from the beginning, let me explain how we got to elotuzumab treatment.

No. There is too much. Let me sum up.

elotuzumab-journey-sum-up

Once upon a time (2018) I was diagnosed with multiple myeloma when my chiropractor sent me for x-rays after months of me complaining to doctors about my back pain. To be fair, back pain is almost always caused by a muscle strain, and myeloma is rare, and typically seen in people two decades older than me.

Anyway, I started on the dex-velcade-revlimid initial treatment cocktail, but when the velcade gave me terrible neuropathy in my hands, and my M-spike started to climb, I had my autologous stem cell transplant (ASCT, or around these parts, just SCT). It worked, but my m-spike didn’t go to zero. For “maintenance” therapy we started daratumumab and 10mg of revlimid.

Dara, as it is affectionately known is the current darling of the multiple myeloma treatment world. It works very well, and is less toxic than a lot of other treatments.

And, that’s when the wheels came off.

My white blood cells and neutrophils plummeted. We stopped the dara and dex, but it was too late. Eventually with zero nuetrophils, I ended up in front of the ear-nose-and-throat (ENT) doc who wheeled me from her office in the outpatient building straight into the emergency room to prep for surgery.

Do not pass go. Do not collect $200.

I had lost my stem cell graft. It might have been the dara.

Although, my oncologist says if it was the dara, that’s a case study. Unfortunately, the only way to find out is to give me dara again and see if it ruins my immune system. Neither me, nor my doc, is willing to take that chance.

As an upside, after coming close to death and getting a LOT of transfusions, including having more of my collected stem cells infused, it turns out my new “transplant” worked. Every test for myeloma is negative including the COLONOseq test that can detect 1 in 105 myeloma cells.

Long-story, made short: MRD-

My doctor wants to keep it that way.

My Elotuzumab Treatment Plan

I just got off the phone with the pharmacist, who is apparently a required step toward getting the elotuzumab (I’m gonna call it elo from here on out) transfusion. I also have to talk to the nutritionist *power eyeroll*.

Remember I’m MRD- here, so we aren’t trying to knock down active myeloma, we are trying to eliminate any tiny traces, and when it tries to come back, be there with stuff already circulating in my blood stream ready and waiting to kick ass.

Elotuzumab Infusions

I don’t know why (I’ll research it and write it up someday), but dexamethasone goes with myeloma treatment like bread goes with sandwiches. So, my infusions will start with dexamethasone. It’s only 20 mg instead of the usual 40 mg. Again, that’s the benefit of being MRD-, you can take the lighter dose.

Elo is preceded by some pre-treatment meds, mostly allergy meds. Then, it’s infusion time. They start slow. The first one takes 4 hours. I get them weekly for two cycles (4 weeks per cycle) and then down to monthly. By the end, they should only take 90 minutes.

I’m gonna need a good book.

I’m trying to fill out and update my Goodreads. You can check it out for other book recommendations. – I highly recommend Once Upon a River. Great writing. Wonderful characters. Satisfying story. — I’m in the middle of Sleeping Giants and like it, but there are a lot of ways to disappoint me going forward, so I’m reserving full judgement. — I’ve only read the first couple of chapters in The City We Became, but I LOVED N.K. Jemisin’s Broken Earth Trilogy. I can’t recommend it enough, and so far The City We Became seems well written and interesting. (Living earth again?) There are some glitches in the writing style and point of view early in the first book of Broken Earth called The Fifth Season. IT’S PART OF THE PLOT! Just stick with it. It will so be worth it in the end.

Maybe my next post can be book recommendations for myeloma infusions and other treatments 🙂

Then, elo works best with pomalyst, or pomalidomide. According to the pharmacist it is chemically very similar to revlimid. But, we are going very light on the dose, 1 mg every other day. Like Revlimid, it has to come from a specialty pharmacy which will mail it to me. The cost will undoubtedly be another indictment of the American healthcare system. Fortunately, I’m one of the lucky ones with good insurance.

Check out my Credit Karma review to see if Credit Karma is a scam.

For me, after clearing my out-of-pocket-maximum the first month, I get the free healthcare most Americans wish they could have. In other words, I’ll never pay a penny of the $10K+ they likely charge for pomalidomide. I do however have to answer their questions about not getting pregnant (pomalidomide causes birth defects), and then wait for them to overnight the package to me, which requires me to hang around all day because it is a signature required delivery.

A small price to pay to keep the myeloma away until they can find a cure.

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

Wish me luck.

Categories
Multiple Myeloma Research

Latest Multiple Myeloma Research Guide

This article is in progress as I put together resources on the latest multiple myeloma (MM) research for patients. This article represents advanced information about multiple myeloma for patients and care-givers that already understand the basics of multiple myeloma.

If you were just diagnosed with multiple myeloma, or otherwise are new to MM, then I would recommend you explore some of the basics of multiple myeloma resources here. If you are interested in induction, or the first chemotherapy you get after a new multiple myeloma diagnosis, you should probably check here.

This article is broader look at the 2020 ASH Conference and the subsequent research.

Multiple Myeloma Treatment Definitions Cheat Sheet

K = carfilzomib = Kyprolis

R = lenalidomide = Revlimid

KRd = dexamethasone = Kd

PFS = progression-free survival (you live, and your multiple myeloma does not get any worse, i.e. progress)

ASCT = autologous stem cell transplant (the typical stem cell transplant where you collect and reimplant your own stem cells)

DRd = daratumumab + Revlimid + dexamethasone

IRD = ixaxomib + Revlimid + dexamethasone

ERd = elotuzumab + Revlimid + dexamethasone

Isa = Isatuximab

Pom= pomalidomide (usually used in place of lenalidomide aka Revlimid)

bortezomib = Velcade

ORR = overall response rate

New Multiple Myeloma Research

This paper is a doozy, covering a lot of current multiple myeloma treatments. Published in March 2020. – Novel Experimental Drugs for Treatment of Multiple Myeloma

If you want to do your own search for real multiple myeloma research use the site operator on your Google searches. The way it works is that you search for your keyword and then add ‘site:gov’ at the end. This tells Google to only return results from websites that have a .gov domain.

You can go a step further and search ‘site:nih.gov’ but you’ll miss some things that way. Generally, just making it .gov filters out a lot of the noise.

Multiple myeloma research studies and papers I am looking at:

A novel BCMA PBD-ADC with ATM/ATR/WEE1 inhibitors or bortezomib induce synergistic lethality in multiple myeloma

Harnessing the Immune System Against Multiple Myeloma: Challenges and Opportunities

I guess this is the big one for me if I’m going on Elotuzumab:

Elotuzumab plus Pomalidomide and Dexamethasone for Multiple Myeloma – It’s from 2018, so that’s pretty recent.

Elotuzumab in combination with pomalidomide and dexamethasone for the treatment of multiple myeloma (2019 – says combination like elotuzumab-pomalidomide-dexamethasone will become standard 2nd line therapies. I guess I’m second line?)

Actors on the Scene: Immune Cells in the Myeloma Niche

Alternative strategies include the use of agents to disrupt BM-myeloma cell interactions. One of these agents is elotuzumab, a humanized mAb that binds to SLAMF7 (family member 7 of the signaling lymphocytic activation molecule), an immunomodulatory receptor expressed on several hematopoietic cells, including myeloma cells and NK cells (160162)

Actors on the Scene: Immune Cells in the Myeloma Niche (nih.gov)

Immunotherapy in Multiple Myeloma

Multiple myeloma: the (r)evolution of current therapy and a glance into the future

Mechanisms of Action and Clinical Development of Elotuzumab (nih.gov) – This one made my head hurt, but it talks about how elotuzumab works.

Elotuzumab activates Natural Killer cells and the marks myeloma cells to be killed… but it’s complicated and involves SLAMF7, which is my new wrestling name.

According to this one, we got the order wrong… should be Elotuzumab before daratumumab. Since I was on dara for so short of time, maybe it doesn’t matter. Optimal sequence of daratumumab and elotuzumab in relapsed and refractory multiple myeloma

Immune Functions of Signaling Lymphocytic Activation Molecule Family Molecules in Multiple Myeloma (nih.gov)

Categories
Living with Myeloma

Why Flying Will Give You Covid, Probably

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.)

Remember these?

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?

six feet spacing boarding line covid
All five of you stay six feet apart, in 10 feet of space…

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.

Prove It

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.

Restaraunts?

Escalators?

People Movers?

Security Line?

Baggage Claim?

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.

covid-airline-text

“Fairly full,” by the way meant all but a few middle seats were full.

I put my head down and hoped for the best.

It worked.

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

So what?

So nothing.

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.

Categories
Multiple Myeloma

Weight Gain After Stem Cell Transplant

My oncologist said this would happen. More specifically, he predicted this would happen following my autologous stem cell transplant (ASCT or just SCT).

At my 100-day post-stem cell transplant appointment, conducted as a virtual appointment thanks to coronavirus (we weren’t calling it Covid yet), my oncologist said, “Let me tell you what is going to happen to you.”

It seems that most people go through a series of fairly specific steps as they recover from the initial devastation of a stem cell transplant. It was curious to note that many of those steps matched the steps of puberty, oily skin, acne, increased libido, but much faster. At the end, he predicted my appetite would come back stronger than before the transplant, and that it would be important to manage it to avoid excessive weight gain.

I heard, but tuned out that last part.

weight gain after sct scale

Gaining Weight After SCT

At the time, I was almost 40 pounds lighter than before the stem cell transplant, down in the 170 pound range.

Playing ‘will I throw up or won’t I throw up’ with every single thing you eat will do that to you.

That worked out to me being 30 pounds underweight. (Actually, if I had more muscle, the 40 pound difference could all be healthy, but we’ll get back to that if it ever matters.)

Now, 14 months after my SCT, my weight is back up to about 214 pounds.

Healthy Weight Following SCT

As a 6′ 2″ adult male (down from 6′ 3″ thanks to kyphoplasty), 214 pounds is not out of the range of healthy weight. Unfortunately, I’m still stick-like, skinny in my arms and legs. All of the weight is in what is becoming a cartoon-like belly.

My former “fat pants” only fit me if I button them under my belly instead of at my waist. And by fit, I mean, I can button them and the crushing compression of the waistband will eventually stretch out enough that I can wear them. I’m sure my waist is something like 42″ instead of 36″ but I refuse to buy anything bigger.

The solution is a combination of weight loss and strength building in the form of exercise.

Post-SCT Exercise Program

If you’ve just come off of SCT, please, please, please, check with your doctors and physical therapists before you dig into anything other than minor exercise. There is a point where you are too fragile to do real exercise. Make sure you are past that before you go out and try stuff.

For me, getting in some real exercise is long overdue. I’m still weak, and I shouldn’t be. I’m still easily fatigued, and I shouldn’t be. I’m still anemic even though I haven’t had a drop of chemo in over six months. I need to start exercising, and not just counting a bit of incidental walking as exercise.

So, here we go. I’ll be doing two things. One recommended by doctors and health professionals, and one not.

The first is ramping up an exercise program based upon walking at least 10,000 steps per day. This will be a combination of walking outside thanks to improving weather, and some nice trails around my house, and using the treadmill that we bought when the pandemic shut everything down. As I build up this stamina, I’ll move forward to running.

Do not run until your docs say it is OK. Myeloma can screw up your bone density and running is already tough on your bones.

I will also incorporate some weight lifting in the form of basic exercises using our 5 lb, 10 lb, 20 lb, and 30 lb dumbells.

Those two things together should work to build my strength and endurance.

Post-SCT Diet

The not-recommended thing I will be doing is a crash diet. Dietitians and doctors hate crash diets, but I hate waiting more. If I can’t see this belly shrinking, then I’m just going to start hating everything and give up.

So, crash diet it is.

My current plan is protein shakes for breakfast and lunch and some sort of plain protein (salmon, chicken breast, and so on) with salad. I will ignore all advice beyond this.

The truth about dieting is that doing anything is better than what you are already doing. Salad dressing is not what makes me fat. Fruit is not what makes me fat. Steak is not what makes me fat.

Eight Oreo cookies at 9:00 pm makes me fat. Eating as much pizza as I possibly can makes me fat. Eating piles of potatoes swimming in butter and sour cream makes me fat. Eating three bowls of Frosted Flakes makes me fat. Chicken wings, nachos, beer, candy, cookies, chips, and so on, makes me fat.

Ironically, just stopping the above would probably be sufficient to make me lose weight, but unless I’m on some sort of militant regimen, my brain won’t fight for me and kick those things out.

This is true of most humans, which is why saying “Don’t eat carbs” becomes a successful diet while the equivalent, “Don’t eat junk food and so much bread” doesn’t get any traction among most people. The more squishy your diet is, the less likely you can make your angry face and say no to your cravings. This way, when I break down and have a baked potato it won’t really hurt me.

Yoga

I should probably throw in some yoga too because my flexibility is non-existent, but for now I’m only committing to the exercise and diet.

If I can get my body back into a useful state, we’ll worry about tricking it out, but for now, the belly goes. Everything else is a luxury for the future.

And, when you have cancer, the future is everything.