My neuropathy sucks today. Feet all tingly.
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.
My neuropathy sucks today. Feet all tingly.
That is all.
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.
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 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.
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.
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?”
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.
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.
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.
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.
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.
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
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.
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.
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
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:
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?)
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
Empliciti is the brand name for elotuzumab. (*Adds elotuzumab and empliciti to autocorrect dictionary*) I will be using elotuzumab and Empliciti interchangeably so that I can focus on facts and not what elotuzumab is called.
I will be taking elotuzumab soon, so it is time to review elotuzumab and look at potential elotuzumab side effects and dosing for multiple myeloma treatment.
As I understand the term, my current multiple myeloma status is MRD negative. The short-short version is that there is no MRD detected anywhere in my body, even by a test so sensitive that it can detect just one cancer cell among one-million cells. This is good news.
In all of my tests since they changed my patient status last fall to multiple myeloma in remission, my myeloma markers all come back negative, or in the green (normal) range. This is also good.
But, in every monthly meeting with my oncologist, as he stares intensely at the screen with my numbers on it, he fidgets terribly with his fingers as he reads off the good news. He is nervous.
And when he is nervous, I’m nervous.
I’m still in remission and my tests all still say zero, so we’ve been working on my other health issues. I’ve stopped taking the powerful antifungal, posaconazole. My blood pressure is finally coming down from ridiculous highs.
I got my sleep apnea results back, and apparently I have “severe” sleep apnea, so I’m getting a CPAP machine, but it will take a couple of weeks. When it comes to sleep there isn’t much of a sense of urgency. After all, you won’t die from crummy sleep so… Apparently, sleep apnea can cause higher blood pressure. Who knew?
My blood pressure is mostly under control with a combination of lisinopril and carvedilol, but my guess is that if the sleep apnea thing works, then maybe that is one more medicine I can stop taking. Besides, maybe I’ll get deeper, more restful sleep.
Check out my Stash vs Acorns and more review.
My hemoglobin shows me as anemic, but just barely so. This has been the big concern. Anything my oncologist can give me will lower my blood counts, so having normal, stable, healthy blood counts first is ideal.
So we wait.
But, he’s nervous.
So, the issue is that while my myeloma is zero now, it can explode back to very-not-zero in a short period of time. The way to avoid this is with some maintenance chemotherapy.
The idea is that if a cancer cell does try and start something, there will already be chemicals in my body ready to kick it in the teeth before it can even get started, instead of it getting a running head start in between monthly (or longer) monitoring.
The similarity in the elotuzumab and daratumumab names is not a coincidence. The drugs are related, but not the same.
As my doc explains it, elotuzumab is a relatively benign chemotherapy that does a great job at keeping myeloma from increasing, but a bad job at lowering myeloma counts. Since I’m already zero, stability is good.
We didn’t start it today, but it is coming next month. He gave me what he called, “a bunch of medical marketing material.”
I like my oncologist. 🙂
I need to understand my myeloma treatments and the chemo they are giving me, including why I take elotuzumab for multiple myeloma maintenance.
The short answer is that daratumumab didn’t work for me, or rather it worked too well, taking out my immune systems along with myeloma. Daratumumab is the darling of the multiple myeloma treatment world. Papers are starting to call for daratumumab to be a first-line treatment, adding it to the standard Revlimid, Velcade, dexamethazone treatment regime. Elotuzumab is the red-headed stepchild of daratumumab.
According to the elotuzumab package insert and brochures I received, elotuzumab dosing usually involves dexamethasone and either Revlimid (lenalidomide) or Pomalyst (pomalidomide). My oncologist says we’ll be adding Pomalyst.
So Empliciti dosing is done by infusion, whereas Pomalyst and dexamethasone are taken as pills.
According to the medical marketing material supplied by Empliciti’s manufacturer, Emplicity helps mark, or identify myeloma cells making them easier to find. Then, it activates NK cells (Natural Killer cells) which attach and destroy multiple myeloma cells.
Sounds good, but apparently it doesn’t work at well as daratumumab. Maybe, in my situation that doesn’t matter since I’m starting at MRD negative. All I need is to make sure it doesn’t come back. I don’t need it to root it out.
Like all chemotherapies, Empliciti can cause other cancers. There really isn’t anything you can do about that if you are taking chemo.
Other side effects include liver problems, fever, rashes, trouble breathing (fun!), dizziness, light-headedness, and as always, infections.
I’m already familiar with the dexamethasone side effects. I guess it depends on the dose. I tolerate the smaller doses pretty well.
I will have to look up Pomalyst since I have never taken it before.
As always, we’ll hope for the best.
The schedule for Empliciti dosing looks familiar to my old Revlimid schedule, with a 28-day cycle.
For the first two months, you take elotuzumab once a week via IV infusion. You take dexamethasone every 7 days, on the same day you get your empliciti infusion. You take pomalyst every day. Starting on day 23, you stop taking everything (no dex or pomalyst) until the next infusion. Basically, a one-week off period.
After the first two cycles, it goes monthly. You get the elotuzumab infusion on Day 1 and take dexamethasone on Day 1 and then every 7 days. You take Pomalyst every day, stopping on Day 23, and taking a week off from all meds until the next cycle where you repeat the same dose schedule.
Brian Nelson is an expert on 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.
If you’ve been reading the news, you know that the Covid vaccine rollout has had its share of problems. You also probably have seen that virtually all states have come up with a tier system that tries to get the Covid vaccine to the most vulnerable people the fastest.
Cancer patients count as vulnerable in most of those systems.
While the tiers are not the same across all of the states, most states have set Tier 1 as health care professionals that work directly with Covid patients, as well as various first responders that potentially come into contact with Covid victims. Obviously, this tier would not include multiple myeloma patients.
However, the second tier, or Tier 2, in most Covid vaccine rollouts include patients who are immunocompromised. Multiple myeloma patients should fall into this tier. Myeloma is a disease of an important component of the immune system, after all. That being said, there can be a lot of interpretation between who is immunocompromised, and who is more immunocompromised than those suffering from other aliments or diseases.
It is also important to understand that the availability of the vaccine plays a role in when I will receive the Covid vaccine as a multiple myeloma patient.
In my individual case, my oncologist has informed me that I will get a message directly from the hospital system that I got my SCT from. The bone marrow transplant unit there has a database of immunocompromised patients. As one of the largest hospital systems in the state, much of the vaccine supply comes in through their doors, especially the Pfizer vaccine due to its difficult refrigeration requirements. And, finally, as one of the largest facilities in that hospital system… well, you get the idea.
My oncologist thinks that I will likely get vaccinated in February, but to keep an eye on my health care portal messages starting now.
The trick to a quick vaccine rollout is that you have to keep moving forward instead of getting caught in bottlenecks like finding and contacting immune compromised patients. As a result, while the state is figuring out how to find and contact multiple myeloma patients in more rural areas, my BMT group will be reaching out and vaccinating us. I suppose this is another reason that all things being equal, you want to be near the research if you have cancer — a university-affiliate hospital is probably the best unless you live near one of the major cancer centers like Anderson, or Mayo.
All three of the Covid vaccines approved for emergency use by the FDA are non-live vaccines. That is, the material in the vaccine is not weakened virus like the MMR vaccine is, so it cannot give you coronavirus, no matter how weak your immune system is. (If your immune system is too weak, however, it won’t mount a response which means the vaccine will be wasted. They might not give it to you right after ASCT, or even some chemo if your immune system is knocked too far down.) If the Covid was a live vaccine, they probably would not give it to myeloma patients at all, or at least not until they had studied it in the strongest of us.
These mRNA vaccines are actually a great advancement, and might prove useful for other future vaccines as well, which would be great for us myeloma patients.
One of the most interesting facets of getting the Covid vaccine with multiple myeloma for me is that I have already tested positive for antibodies to coronavirus despite never having actually developed any Covid symptoms. (Lucky, right?)
The oncology team still wants me, and all of the multiple myeloma patients who had Covid, vaccinated anyway. And, for bonus fun, they’ll be monitoring our blood draws to see if, how, and when people with multiple myeloma mount a response to the Covid vaccine.
So, while cancer patients like us won’t be skipping the Covid vaccine line, we won’t be at the end either, which is a nice change from last year, when we were put at the bottom of people to treat if there was ever a need to triage Covid care.
If you get the Covid vaccine and you have multiple myeloma, let us know how it goes. So far, the people I know that did get it report fevers, sweats, and pains, ironically, kind of like getting the flu. But, it only lasts for one or two days. The fevers are so common, that my doc even said if I got a fever after taking the Covid vaccine to just take Tylenol and get some rest, not call in like I’m usually supposed to if my temperature ever goes over 100.4 degrees.
Welcome to the post-Covid age, my myeloma friends.
My multiple myeloma bone marrow biopsy results came in.
And, today we Google.
As is always the case, I have a visit with my oncologist coming up after having done some testing to check on the status of my multiple myeloma. Talking to the doctor will give the actual, real results of my MM condition and how it applies to me.
But, we have this health care portal thing, and my test results show up there, and I kind of like knowing what is going on.
Since my diagnosis, I’ve picked up some terminology and understanding of what certain tests are, and what we are looking for, and how they apply to me. As always, there are different forms of myeloma and they affect different people in different ways, so what is important for me sometimes overlaps with everyone else, and sometimes does not.
If you haven’t read along my journey, it can be helpful to know where I am now while interpreting these results:
Bone marrow biopsies, or BMB, take a few days to process, and that is often just to first results. If I recall correctly, some of the results come in even later. So, it’s been 7 days since my BMB, and the first stuff is showing up in the health care portal. Unlike other tests, I’m not really sure what I’m looking for in the results.
Interested in Zelle? Check out Zelle reviews.
At least the summary doesn’t say anything overly scary in layman’s terms, but that doesn’t mean it isn’t bad (or good). It does however, have some sentences that are the conclusions. It’s just that I don’t understand them. We’re going to google it, but it isn’t as easy as it sounds.
Holy crap! Spellcheck got the word hematopoiesis. I’m impressed.
After some looking, the point of this sentence is how well my stem cell infusion is working. Trilineage hematopoiesis refers to my bone marrow making the three kinds of blood cells, white blood cells, red blood cells and platelets. The word normocellular is good too. This refers to the fact that as we age the amount of these cells decreases. Later on the comment says that the marrow is variably normocellular, ranging from 30% to 70%. That’s also good. — So we’re going to chalk conclusion #1 up as a win.
Alright, this one was easier to suss out. The main thing of multiple myeloma is that plasma cells, which usually make make antibodies to fight bacteria and viruses, go nuts and keep making antibodies whether the body needs them or not. Plasma cell neoplasms are caused by myeloma cells and end up forming tumors in the bones and soft tissues. This is what wrecked my back last year causing a pathological 25% compression fracture.
So, if there is evidence of plasma cell neoplasm, that’s good news. Even if there is some myeloma running around in my body it is not, as of now, causing trouble.
So far, this is good news for your’s truly.
This lists, without comment Thrombocytopenia and macrocytic anemia.
Thrombocytopenia means that my blood has an abnormally low amount of platelets. We already knew this one. My latest result is 69, the normal range starts at 150. I get a transfusion of platelets below 30. But for normies, numbers beneath 50 require “emergency treatment.”
So, this number is shockingly bad for the normal population, but not at all terrible for the current state of my body. Also, the number it trending up, albeit very slowly.
Macrocytic anemia means both that my red blood cells are abnormally large, and that there are less of them than normal. This is bad, but it isn’t new news. Again, my marrow should be making more red blood cells than it is. This number has been trending up, so while it means that I have little energy and tire very easily, I can live with it.
This is wicked good news.
Monoclonal plasma cells make the dreaded M-protein that this the calling card of multiple myeloma. If there is no increase in plasma cells (myeloma is characterized by overproduction of plasma cells), and there is no monoclonal plasma cell population, that means there is basically zero m-protein in my body right now. — That’s continued remission.
Yeah… welcome to the thunderdome of medical words and jargon. I’m not going to bother googling all of this because interspersed within the jargon are words like, “within normal range,” “no significant,” and “adequate,” and “appropriate.”
This was buried down in the notes, but it is also very good news. One of the telltale signs of myeloma is out of proportion kappa and lambda light chains. So, if I have “appropriate proportions,” that’s very good.
As near as I can tell, this confirms what we have been seeing in my blood work. There is currently no myeloma detectible myeloma in my body. That’s full remission. Woot!
After seeing zeros on the usual tests for all of myeloma stuff, my doc sent off for a specialized test that can detect the tiniest traces of multiple myeloma in my body. According to this report, that will be reported by some genetics laboratory later.
So, I’m not dying. Not any more than you are, at least. I still have issued. My stem cells aren’t kicking out my red blood cells, or platelets as well as they should. I’m still anemic, which is concerning because I’m not currently taking any chemotherapy, so there is really no reason for me to continue being anemic other than my body just isn’t back to full function yet.
If it is coming, just very slowly, then I’ll take it. I just hope this isn’t maxed out.
Similarly, while my platelets no longer require regular transfusions, they aren’t “normal” in any way. That is the same problem, the bone marrow needs to crank them out faster.
Until then, I’m taking all those vitamins (folic acid, and B-12) to help anyway I can.
Did you know that Tom Brokaw has multiple myeloma? He wrote a book about it if you are looking for some connection and, frankly, some hope, because he has obviously continued to do very well. He’s 80 now.
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.
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.
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?
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.
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.
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.
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?
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.
It’s as scary as a word gets. For millions of Americans it’s one of those things that happens to other people. There is maybe a friend or a family member, maybe a friend of friend with cancer, or maybe just someone you heard about that one time at your company or on Facebook.
Until 2019, I was one of them.
Not a lot of people have heard of multiple myeloma. That’s not surprising. It is considered a “rare” cancer. In 2018, approximately 125,000 people were living with myeloma in the United States. That might sound like a lot, but consider that there are 327 million people living in the U.S. and that percentage looks pretty small.
Or, if you want to compare multiple myeloma to more common cancers, consider that 268,000 new cases of breast cancers will be diagnosed this year alone. That’s more than the total ongoing cases of myeloma. Multiple myeloma’s closest, more famous, cousin is Leukemia, with 200,00 new cases diagnosed in the United States each year.
Not only is multiple myeloma a rare cancer, it is most frequently diagnosed in people aged 65-74 years old. So, imagine how “lucky” you have to get to be diagnosed with multiple myeloma at age 45.
Yeah. I’d have rather gone to Vegas, thanks.
So, what is the point of this whole thing?
Well, I’m a writer. I always have been. It’s my way of talking and actually getting to say what I mean to say. Also, I build websites. What’s one more?
Most importantly, writing can be therapeutic. I find that such writing is more therapeutic when I put it “out there.” Whether anyone ever finds it and reads it, or not is irrelevant. The fact that I publish what I think, write, and feel, is similar to actually talking to someone for me.
Finally, when I was first diagnosed with multiple myeloma I went searching for resources and had trouble coming up with what I was looking for. While there are many great resources out there with facts and figures for multiple myeloma, those resources are often very clinical. The American Cancer Society has a multiple myeloma section that is full of solid, factual information. The International Multiple Myeloma Foundation is another good resource.
And, if you see one of these in the literature holders at your oncologist’s office, or at the hospital, I highly recommend picking one up. It’s called the Multiple Myeloma guidelines for patients.
It’s nice to be able to thumb through a book when you’re brain is filled with a fog of worry and fear. (The same thing is available online at NCCN.org/patients.) You’ll have to click on that “more cancers” button in order to find the multiple myeloma one though. Might as well start getting used to it, this is an”other” cancer.
However, when you write advice like that for a broad audience you have to careful to not be too specific lest you write something that does not apply to everyone. One of the most frustrating things about multiple myeloma is constantly being told that everyone is different, so no one will really give you any answers.
It is true of course. Everyone is different. Not only that, there are a ton of different kinds of multiple myeloma characterized by which genes are mutated and what kind of light chains you have, and so on. And, that’s all before you account for the fact that it will affect younger people differently than older people. That some people tolerate treatment very well, while others don’t tolerate it at all. Still others respond well to some things while others don’t.
The purpose of this website then will be to provide MY experience and MY discoveries that I make about MY multiple myeloma along the way. Such specific, real world, understand of what it is like to actually have multiple myeloma is incredibly useful, even if not everything applies to your specific case. As such, I hope to provide a myeloma resource that I wish I would have found back when I was first diagnosed, and frankly, ever since.
It will take a while. I’ve been “meaning” to start writing this site for almost six months now, but one of the things that MM does is rob you of time. Between doctor appointments, fatigue, medication side effects, and mental stress getting to things like extra projects can be tough. The good news is that I’ve got ideas, and now I’ve got it started. That means it will come easier and faster now.