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
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.

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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.

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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.

Categories
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.

Categories
Living with Myeloma

Cancer Depression

Depression, like many mental issues, depends entirely on how you characterize the requirements for something to qualify as depression. I’m no psychologist; I don’t even play one on TV. However, my understanding is that true depression requires that it not be result of a life event, so, let’s talk about cancer and depression.

It’s Not Depression, It’s Cancer

It is expected that finding out you have multiple myeloma will trigger some negative emotions, but is that cancer depression?

It doesn’t matter. There is really no benefit, for me at least, to having depression as opposed to having a natural reaction to learning that you have cancer and that it will affect you for the rest of your life.

There are prescriptions available, of course. Frankly, my multiple myeloma oncologist seems fine with writing me a prescription for whatever I need, so I bet if I asked I could get some sort of antidepressant. Of course, they might make me talk to that counselor again… 😣

I guess this is why it matters whether or not it’s a natural reaction to having cancer, or if it is depression.

cancer depression

What Is Depression?

I have ADHD. I’ve spent a lot of time researching ADHD and learning what ADHD is. The most important thing to understand is that ADHD isn’t just getting distracted, or having a hard time focusing. ADHD caused by actual biological differences in the types or amounts of neurochemicals generated by the brain, and its reaction to them.

In other words, ADHD is biological. You can’t fix it with attitude adjustments or by trying harder. You can use various ADHD tricks to manage how your brain works, and subsequently how you go through life, but you can’t flush out the root biological cause with behavior modification.

When it comes to depression, there seems to be a biological component. Ironically, many of the same neurochemicals that cause ADHD also cause depression. The two issues are often comorbid conditions, although more people with ADHD also have depression than people with depression have ADHD.

However, depression can also be something that gets caused or triggered later in life. One could argue that this makes some depression a mental thing, like PTSD, where the brain just responds differently than it once did.

One can also look at the increasing evidence that the brain changes over time, a concept known as neuroplasticity. If the brain has a biological change that now produces, or fails to produce, the proper neurochemicals, depression can be something that is triggered.

What Does Cancer Depression Feel Like?

Where does that leave me?

Well, I’m going to call it cancer depression even if I don’t have any formal diagnosis. I’m doing this for two reasons. One, it appears to be a semi-permanent thing, easily triggered. Two, it doesn’t feel like me. I mean, I didn’t feel like this before, so something has happened.

What does cancer depression feel like?

Like most things, both in life and with this stupid disease, it can be different for everyone. For me it’s not sadness so much as a crushing apathy that comes from knowing that the clock is ticking much faster for you than everyone else. Even if you don’t checkout, there is still a solid chance that you won’t physically be able to continue what you start, whether it’s the fatigue from the chemo, or an unexpected hospital stay.

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Going through life with your brain set to “It Doesn’t Matter” is tricky, and it’s new for me. Unlike my ADHD, I don’t have any tips or tricks to help.

Time for some research.

For now, I don’t think I’ll ask about the antidepressants, but that might change in the future.