Categories
Living with Myeloma

What Is The Difference Between Relapsed and Refractory Myeloma

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.

Categories
Multiple Myeloma Insurance

Beware Short-Term Health Insurance Plans

I often say that we aren’t in the name, but they are our people anyway, about Leukemia & Lymphoma Society. The LLS advocates and helps not only those with the title diseases of leukemia and lymphoma, but all the blood cancers, including multiple myeloma and Hodgkin’s disease. So, when they talk, those of us with myeloma should listen.

The LLS recently published a report showing that many of the so called STLD, or Short-Term Limited-Duration, health insurance plans are essentially scams that can be particularly harmful for those diagnosed with cancer.

Short-Term Health Insurance Scam

I used to be a financial planner, so I know a little something about money and insurance. I’m currently a cancer patient, so I know a little something about cancer and health insurance.

You can read the LLS report here, but here is the short version. These plans are supposed to be temporary stop-gap health insurance while you are in between getting real health insurance. But, they lobbied and got a rule change that allows them to offer you the plan for 12 months, and you can renew it like 3 times. As short-term plans, they do not have to meet the minimums that the Affordable Care Act requires of real health insurance plans.

Without that regulation, insurance companies basically turn these into non-paying health insurance that they charge you premiums for. It’s money for nothing.

In short, these policies often do not cover pre-existing conditions, even if the salesperson says otherwise. Even if they do cover it, they come with crazy deductibles and out of pocket maximums.

Regular Health Insurance

No matter what your politics are, you should have real health insurance, the kind that is regulated by the ACA. You know it is real health insurance if is NOT a “short-term” plan. Any policy you get through your employer, or from an ACA marketplace is regulated to have certain minimum coverage. The most important one for those of us with cancer is that there is no lifetime maximum payment of care.

The second most important is the annual out of pocket maximum. Short-term plans are common for six months. That means your out-of-pocket maximum of $10,000, for example, only counts for those six months. Even if you renew the policy, that $10,000 starts over.

Short-term health insurance is better than no health insurance, but if you are paying attention, you won’t need it for more than six months, or so, or maybe not at all.

Annual enrollment periods for real health insurance are at the end of the year, but you can enroll during the year if you have a qualifying “life event.” Those include getting married, having a kid, losing your health insurance (like if you lose your job), and even moving to a new state. The other event is if you become eligible (or ineligible) for health insurance subsidies, meaning if your income drops (or disappears), or you get poorer. You get the idea, if your life imploded somewhere, you can get real insurance.

You usually get 60 days after the event to sign up.

Keep Your Health Insurance

If your life didn’t blow up, and if you’re doing just fine, but you just never bothered to buy health insurance, well… you’re a fool.

I’m glad you are looking into it now. Buy a short-term health insurance policy for the minimum amount of time it takes for you to get to an enrollment window. If it’s July, grab a six-month policy. If you’re getting married in three months, grab a three-month policy.

Then, as soon as you get the chance, sign up for a real health insurance policy. Choose one that fits your income and premiums but pay special attention to the out-of-pocket maximum. With a single infusion costing $20,000+ deductibles and co-pays mean nothing to a cancer patient. All they do is change how fast, and in what way you hit, $7,500 or whatever.

Good luck. May any and all gods bless you and your care.

Categories
Multiple Myeloma Treatment

What Is Car T for Multiple Myeloma

So, you have multiple myeloma, or you know someone who does (or how else did you end up here?). Chances are you have heard of CAR T (pronounced car — like a Ford — and the letter T — like Sesame Street). What is CAR T exactly and how does CART fit into multiple myeloma treatment?

What Is CAR T?

Let’s start with the basics. Officially, you capitalize the CAR in CAR T because it is an acronym, or abbreviation if you prefer, for chimeric antigen receptor. So, CAR T cell therapy is chimeric antigen receptor T-cell therapy.

Moving on from science terminology, CAR T-cell therapy is a type of immunotherapy. Immunotherapy is when you use the body’s own immune cells to treat their cancer. Assuming this all worked perfectly, this is very much a Star Trek level treatment. Unfortunately, we’re still working out the bugs.

what is car t for multiple myeloma

How Does CAR T Work?

T-cells are the body’s immune system workhorse. When you get regularly sick, like with a cold virus, or something like Covid, your body mounts an immune response to kill the invading cells. Time for a quick science review for you biology majors, or introduction to the human body immune system for you non-science majors.

The body has white blood cells. Consider these the security guards. Their job is to look for trouble. White blood cells patrol the body, but they mostly hang out in lymph nodes which filter and trap germs. These are like the security shed, or security camera room. If the white blood cells see something, they sound the alarm and the guards start pouring out of the security rooms into the night find more intruders.

Pathogens such as viruses and bacteria have antigens on their surface. Anything that triggers the immune response is called an antigen. (Psst. That’s the A in CAR T.)

If the body has seen this intruder before, either by previous infection, or from a vaccine, the body’s B-Cells will recognize the antigen and produce antibodies. These antibodies are specifically designed to attach to this specific type of antigen.

Antibodies do not destroy infectious cells on their own. Rather, antibodies signal that the cell they are attached to is bad and must be destroyed. For analogy purposes, a soldier popping smoke to mark a target, or pointing a laser where the bomb should fall is acting like an antibody.

T-cells kill the pathogen floating in body, but also the cells that have been marked by antibodies. In this way, the body kills not only the virus, but also the infected cells that the virus is hiding inside. T-cells also release cytokines which further regulate and control the body’s immune response.

See my financial writing with this Digit review.

Immunity works when some of the B-cells and T-cells transform into memory cells and get stored in lymph nodes. If the same antigens appear in the body again, these B-cells and T-cells begin the process of destroying it immediately before enough cells can be infected for the virus to get a foothold in the body.

What Does CAR T Do To Immune System

OK, so here we go. Remember when we talked about B-cells marking virus infected cells with antibodies? The important thing to remember is that the T-cells don’t recognize the virus infected cells, they recognize the antibodies that are stuck to the infected cells by B-cells.

The way this works is that T-cells have a receptor on them that is the mirror of the antibody. (Receptor is the R in CAR T.) Think of this like puzzle pieces. The T-cell puzzle piece will only match up with the matching antibody pieces. This way the T-cell kills the right cells (infected) without killing the wrong cells (healthy ones).

All that is left to understand is “chimeric.” I don’t have any analogy that will help here other than to say that in medicine, chimeric means any organ or tissue that contains cells with different genes than the rest of the organ or tissue. In our case, that will be deliberately modified genes on T-cells, but let’s not get ahead of ourselves.

How Is CAR T Made?

Now that we know all the puzzle pieces, let’s figure out how they make CAR T and why it is such a promising treatment for myeloma.

Cancer cells are mutations of the body’s own cells, as such, the white blood cells don’t really notice them. Cancer cells are not foreign, just broken. That’s why your body doesn’t fight back against cancer inside your body.

However, if you could somehow mark cancer cells as bad the immune system would attack them. You could do that by having a B-cell match and attach to cancer cells generating antibodies. (That might work someday, but that is not CAR T.)

The other thing you could do is get T-cells to think that a protein on the surface of cancer cells is an antibody. So, when the T-cell matches and attaches to that protein on the cancer cell it will kill it.

Basically, if we genetically modified T-cells (making the chimeric), with an antigen (the surface protein) receptor that matched the cancer cells, then the T-cells would attack those cells and generate a further immune response to follow up. Chimeric Antigen Receptor T-cells (CAR T).

How Well Does CAR T Work on Myeloma Cancer?

The catch is that while the altered T-cells are efficient killers, the body isn’t making that kind of T-cells, so the only ones that can attack the cancer are the ones you put back into the body. In other words, you have to flood the body with modified T-cells and hope they find all (almost all) of the cancer cells.

To make CAR T treatments, doctors remove the patient’s own blood and filter out the white blood cells, which include T-cells. They add a gene for a receptor that will bind to a protein on the cancer cells. Then they grow millions of T-cells with this added (chimeric) gene. Then they put those millions of T-cells into the patient’s body with an infusion. The flood of T-cells attaches to and destroys cancer cells in body.

As you can imagine, CAR T only works when the T-cells can float through the blood stream finding cancer cells. So, in its current form CAR T only works for liquid cancers like leukemia, lymphoma, myeloma and other blood cancers.

Check out my other technical writing here.

CAR T Side Effects

There is always a catch.

In medicine, and cancer treatment, the catch is side effects.

The biggest problem is cytokine release syndrome (CRS). When the CAR T cells multiply, they release cytokines into the blood to trigger the rest of the basic immune system. Unfortunately, the basic immune system doesn’t help cure cancer cells. So, those effects are just trouble inside the body.

Typical side effects include fevers and chills, nausea, headaches, fast heartbeat, fatigue, muscle pain and joint pain, and worst of all problems with breathing.

CAR T can also cause some weird nervous system issues like seizures, twitching, loss of balance, and loss of consciousness.

Kinds of CAR T

There are a few different kinds of CAR T. They are named for the way the chimeric antigen is created and shaped.

  • Tisagenlecleucel, also known as tisa-cel (Kymriah)
  • Axicabtagene ciloleucel, also known as axi-cel (Yescarta)
  • Brexucabtagene autoleucel, also known as brexu-cel (Tecartus)
  • Lisocabtagene maraleucel, also known as liso-cel (Breyanzi)
  • Idecabtagene vicleucel, also known as ide-cel (Abecma)

Can I Get CAR T Treatment?

CAR T treatments are still very new. Doctors are still working out all of the issues and learning to avoid things like CRS. It is possible to do more harm than good with CAR T. So, they do what they always do with new cancer treatments for myeloma patients.

New treatments for multiple myeloma start out as experimental. In order to get them you have to participate in a clinical trial. Once the trials have good enough results they approve the treatment for “multiple relapsed or refractory” myeloma.

The basic idea is this. There are a bunch of myeloma treatments out there right now. So, doctors will start patients on the most basic, or standard, myeloma treatments. Today, that is usually some form of dexamethasone, Revlimid and Velcade, often called VRd.

If that doesn’t work, or if that stops working, then you try the next thing, maybe a stem cell transplant, or adding daratumumab, or… whatever the patient and doctor think might work best.

But, we all know there is no cure for multiple myeloma and eventually it will come back. That is a relapse. Or, if the medicine had been working, but now it isn’t, that is called refractory.

So, when other things are not working, doctors are now approved to use CAR T treatments.

Exactly when you can get CAR T is open to interpretation. My oncologist said that you can basically say you have tried as many “lines” or regimens as you want. It all depends on how you count them. In other words, when he thinks the time is right for CAR T, then we’ll get the paperwork to match the requirements.

They will keep doing this until they have the side-effects figured out and they have thousands of real-world patients that have had success with the treatment. In a few years, new myeloma patients might go from VRd straight to CAR T without ever doing a stem cell transplant or other treatments.

A few years back, daratumumab was approved for use in multiple relapsed or refractory multiple myeloma. As time has gone by and the safety and efficacy of daratumumab has been proven in thousands of real-world patients, it has “moved up” the scale of how soon it is used. Some myeloma specialist doctors are now calling for daratumumab to be part of the first response in some myeloma patients.

All new and experimental multiple myeloma treatments do this. Basically, start with the sickest people who are out of options. Officially, that is something like “have relapsed / refractory myeloma and have tried at least four lines of previous treatment.

If it doesn’t work, well they didn’t have any other choices anyway. If there are side effects, well, they would have died, or gotten sicker with myeloma anyway. Then, you sort of move up: Has tried at least three lines of treatment, and so on.

The Sloan Kettering people have a nice little video explainer that is even more basic than my explanation here.

Will My Insurance Cover CAR T for Multiple Myeloma?

Unfortunately, it always depends on your insurance policy. Even more unfortunately, it often depends on how well your doctor (or their office) submits the request to your insurance company.

As a new, and very expensive treatment, CAR T will need to be pre-approved by your insurance company. Whether or not they cover it will depend on your policy, and what else you have tried, plus how dire your situation. In other words, if you haven’t tried some (all?) of the cheaper drugs, they probably won’t cover it.

The good news is that with FDA approval, at least one CAR T treatment no longer counts as “experimental.”

If you get denied, don’t take no for an answer. File an appeal, and then do it again, and again.

Categories
Living with Myeloma

Multiple Myeloma Ranting

It’s not all sunshine and rainbows.

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.

But…

takeda resource navigator multiple myeloma

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.

I will try to be less angry.

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
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.

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Multiple Myeloma Insurance

Cancer and the Election

Health care in America is dumb. Anyone who says differently is peddling political talking points. Still, in America these days, all that matters is “winning” against the other party, and on talk shows, and Twitter. That means taking care of actual Americans falls pretty far down the list, which brings us to today’s topic.

Cancer Health Insurance and the US Election

Hi. My name is Brian. I’m a real person. I’m a real American. Not that it really matters, but I was born here, right in the middle. I’m from Colorado. My dad, and his dad, and his dad (you get the idea) served in the military.

When the leaders of this country talk about health care and health insurance, they should be talking about what is best for me. They don’t. They talk about what is best for their party.

health care cancer america election

Here’s the deal. If you want to talk about what is, and what should be, there are places for that. Here, I have cancer, right now, today, in America. The only thing that matter is what is.

So, how does the election affect Cancer health care in America?

Health Care and Cancer and New Politicians in Washington

I know what you constantly see on Twitter, and maybe even on the news about health care in America. Believe it or not, I’m actually one of the Americans for whom the current system works just fine. Unfortunately, I can’t really take any credit a lot of it is luck, and any one of several changes would bankrupt, and then kill me.

As a white color worker, I’ve always had some sort of employer sponsored health care. In America, the best health plans come from employers. That’s dumb, but that’s the way it is.

Luckily, my wife is also a white color worker with a better, higher paying job than me. (I run my own business.) So we are on her health plan. We pay a reasonable monthly premium for family coverage.

Go check out my look if Credit Karma is a scam.

When you have cancer, the only thing that matters is the Out of Pocket Maximum. I see people all the time complain about how their plan “doesn’t cover anything,” because they haven’t hit their deductible yet. That isn’t my world anymore.

During the first couple of days of the new plan year, I had a daratumumab infusion. With that comes administered dexamethasone and four hours in a transfusion chair. The cost of that one day started at 100% out of pocket, then hit my deductible and was covered at 80%, before smashing through my annual out of pocket maximum. The rest of my health care for the year is “free.”

When I got sick, I stopped working. Since we were on my wife’s health insurance, that didn’t affect my care. If you seriously think that your boss determining what kind of health care you have is a good system, you are wrong. Don’t bother commenting. The only reason you think differently is because you care more about your “team” winning than you care about what is smart, and makes sense.

Pre-existing Conditions and Cancer

You would think my biggest concern would be the whole pre-exisiting conditions thing. That is a big concern. Fortunately for me, even the previous law worked such that if you had “continuous” health coverage for six months, then your new insurance had to cover your pre-existing condition.

For anyone else with cancer, not covering pre-existing conditions is a death sentence.

Forget those people who say you can always get care at an emergency room. For people with cancer that’s too late. If I’m in the emergency room with out of control light chains and tumors, there is no emergency treatment that will help. I’ll be dead soon. Even if they could save me, without ongoing non-emergency treatment, I’d be back in a few months.

Using Acorns to invest your change.

I would hope that there would be enough compassion — even in Washington — that no one would consider not covering pre-existing conditions, but that just isn’t the case. You see, the other “team” passed the law that makes insurance companies cover pre-existing conditions, and therefore, it is bad. People who need care don’t matter as much as beating the other team.

Lifetime Maximums and Cancer

What I’m really afraid of are lifetime maximums. Remember how I told you about blowing through my out-of-pocket maximum in one day? How long do you think it would take me to crush through a lifetime maximum?

Not long.

It would be even easier to sail through an annual maximum.

Luckily for me, lifetime and annual benefit maximums are currently prohibited. Unfortunately, it’s part of the ACA, and that was passed by the other “team.”

You get where this is going.

I will be watching not just for the pre-existing condition thing, which I can get around, but also the lifetime maximum thing, which I cannot.

I hope that this new batch of politicians is willing to look around and do what is right for people who have cancer, and other diseases, instead of only caring about their own team winning.

But, I’m not holding my breath.

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Living with Myeloma

Alpha-Lipoic Acid and Neuropathy

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.

You may wish to talk with your doctor. There are prescriptions for neuropathy that are available from your oncologist.

Alpha-lipoic acid and neuropathy

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.

So, why am I trying ALA anyway?

Check out my SoFi review.

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.

I’ll keep you posted.