Categories
Multiple Myeloma Insurance

GoodRx Works – A Review

GoodRx works to get a cheaper price on prescriptions.

OK, look. I’m a skeptic. I write a personal finance blog about financial independence, and one of the key things I do is analyze the fine print to find the gotchas.

Things are almost never what they seem, and there is always a catch somewhere. As they say, “If you can’t spot the fish at the table, it’s you.”

To avoid being the fish, let’s take a look at how GoodRx works.

How Does GoodRx Work?

GoodRx works by offering you a cheaper price for some medications via a GoodRx coupon, or other price. To use GoodRx, just give the pharmacist the numbers on your GoodRx coupon.

goodrx works for cheaper prices review
I blocked out the numbers just in case they are specific to me or private or something.

How To Use GoodRx Step by Step

Like almost everything these days, there is a GoodRx App.

The GoodRx app is the best way to use GoodRx, but you can also use the GoodRx website and print out a code, or email yourself the numbers, or whatever.

You need a prescription from a doctor to get medication with GoodRx. It doesn’t help with that step.

Check out my Wealthfront app review.

Once you have a prescription go to a pharmacy. Check the GoodRx price before you have your doctor send in the prescription. Have them send it to where you get the cheapest price. Or, if your doctor still has the ability, get a paper prescription, then you can figure out which pharmacy to use later.

For my purposes, I need pregabalin, or Lyrica. It turns out that it is restricted somehow, so I have to get an electronic, direct-to-the-pharmacy prescription, so I had to choose my GoodRx pharmacy first.

It’s cheapest at Costco, but Costco isn’t as easy to get to for me, plus you have to deal with Costco. So, for my purposes the nearby King Soopers is the way to go. I had my doc’s office send a prescription over there. I specifically asked them NOT to include my insurance information.

GoodRx and King Soopers

GoodRx mentions that some pharmacies may not work with GoodRx, or that some won’t realize that they have to work with GoodRx. There is a phone number that you can call when that happens.

At King Soopers (it’s the Kroger grocery store in Colorado), they not only accept GoodRx, but it is up on some of their own signage. When I went to the pharmacist to get my prescription, she set it down on the counter and said, “You don’t want to pay that.”

I said, “I have this GoodRx thing.”

She replied, “I was hoping you would say that.”

So, however GoodRx works, King Soopers is fine with it. The difference for me was $477 with no insurance coverage to $17.26.

To get that price, she had me read off the Member ID, Group Number, BIN number, and PCN number. She punched them into the computer and my new cheaper GoodRx price came up. She also said that now it would be in the computer and they would use GoodRx automatically for my next refill.

(Here is a curious note that I don’t have time to look into. According to the GoodRx app, it will give you a price of $15.97 at Costco. The interesting part is that is from the regular price of just $60. Everyone says Costco is the cheapest way to get prescriptions. I see more and more evidence that, that is true. If you don’t have insurance, check out Costco pharmacy prescriptions.)

GoodRx With Insurance

Let’s start at the beginning. I have cancer. I take tons of medications. For all of my medications, except pregabalin, I pay $0. That’s right, nothing. Every once and a while a pharmacy tech will comment, “Your prescriptions is free. You must have good insurance.”

The full pharmacists never say this. They have a better understanding of how health insurance works for prescriptions. They probably have an inkling that my medications are “free” because I’ve already paid out a lot, which is true. I hit my out of pocket maximum within a few days of the new insurance year.

I happened to be in the hospital this year, but it wouldn’t take long anyway. A single dose of most chemo medications costs thousands of dollars.

The only prescription I have a problem with so far is pregabalin, or Lyrica. It is not that my insurance does not cover pregabalin, it does. However, it only covers a certain amount, which is lower than what I need to maximize my pain relief. So, I need a way to pay for the rest of the pregabalin I need.

At my usual pharmacy, the extra, uncovered pregabalin would cost $117. That’s not terrible, but, I’m not looking to add another $1,400 per year to my medical expenses.

You can’t use GoodRx and insurance at the same time. Using GoodRx prescriptions is like paying cash. That means that the amount you pay for GoodRx medications will not count toward your deductible, or annual out of pocket maximum.

GoodRx works to get you a lower price without your insurance, so it may be worth pay a little more if that helps you hit your insurance company deductible, or other benefits.

Keep saving and investing with Acorns.

Does GoodRx Really Work?

Like so many Americans with high medical costs, I’m always on the look out for an alternative. I’ve seen plenty of GoodRx commercials and advertisements, so I thought I would look into how GoodRx works and if it would help me.

Is GoodRx a Scam?

My biggest concern was for a GoodRx scam. There are two ways to know something is not a scam. First, they didn’t ask me for any payment information.

There is a GoodRx upgrade called GoodRx Gold. It appears to be a subscription program that offers you cheaper GoodRx prices than the regular users get. People who need more prescriptions might find GoodRx Gold worth it, but for me just getting this one medication, GoodRx Gold is not worth it to me. I did not use it so I can’t do a GoodRx Gold review.

The second way to know something is not a scam is to figure out how it makes its money. That’s harder than it sounds. It isn’t obvious how GoodRx makes money.

I did a lot of research about GoodRx prices and how GoodRx makes money. First GoodRx offers insurance network or pharmacy benefit manager (PBM) prices to customers. In exchange, GoodRx owes the PBM a fee for using the network.

But, when you use GoodRx the pharmacy pays GoodRx a fee based on being part of the PBM.

GoodRx refunds part of that fee to the customer create an even cheaper price. This is kind of how Rakuten works to pay cash back. GoodRx works by passing on the part of the fee paid by the pharmacy to the PBM, and keeps whatever is left over.

It doesn’t sound like much, but like with a lot of things, if you turn a few bucks per customer into lots of customers, you make lots of money. That is why GoodRx is free and spends a ton of money on advertising.

According to GoodRx investor relations, GoodRx made over $100 per quarter with this business model, so I guess is no need for GoodRx scamming me 🙂

Where GoodRx Does Not Work

Nothing is perfect. I found good prices for GoodRx Adderall coupon, and also my previous neuropathy drug. The GoodRx gabapentin coupon price is also a discount if your insurance doesn’t/won’t cover it.

On the other hand the GoodRx Vyvanse coupon price is still in the $400 range in my area. I guess they don’t offer as much of a discount via the PBMs GoodRx works with.

GoodRx Review

I have only tried GoodRx with one drug, and only at one pharmacy, but so far, I am thrilled with how well GoodRx works. I would recommend GoodRx to anyone looking for a way to get cheaper prescriptions.

Neuropathy Review

You can also try alpha-lipoic acid for neuropathy. It is over the counter treatment for neuropathy that lots of folks swear by. So far, I don’t think it really seems to be helping me.

You can also try CBD. If you live in a state with medical marijuana, studies show that using a 200:1 or 100:1 type of CBD:THC product provides the best relief. You may need a medical marijuana card or equivalent in your state.

About the Author

Brian Nelson is an expert via first-hand knowledge, but is not a doctor. Brian was diagnosed with multiple myeloma in 2019. He has been living with it ever since. All information is form informational purposes only, and is not medical advice. Check with you own doctor about your specific situation for medical advice.

Categories
Living with Myeloma

Covid Vaccine Multiple Myeloma

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.

I tried to get a Covid vaccine stock photo, but didn’t want to spend all day on it, so I took this one from the Pfizer oncology press kit. – I figure we count for that, eh?

What Tier is Multiple Myeloma for Covid Vaccine?

While the tiers are not the same across all of the states, most states have set Tier 1 as health care professionals that work directly with Covid patients, as well as various first responders that potentially come into contact with Covid victims. Obviously, this tier would not include multiple myeloma patients.

However, the second tier, or Tier 2, in most Covid vaccine rollouts include patients who are immunocompromised. Multiple myeloma patients should fall into this tier. Myeloma is a disease of an important component of the immune system, after all. That being said, there can be a lot of interpretation between who is immunocompromised, and who is more immunocompromised than those suffering from other aliments or diseases.

Vaccine Availability

It is also important to understand that the availability of the vaccine plays a role in when I will receive the Covid vaccine as a multiple myeloma patient.

In my individual case, my oncologist has informed me that I will get a message directly from the hospital system that I got my SCT from. The bone marrow transplant unit there has a database of immunocompromised patients. As one of the largest hospital systems in the state, much of the vaccine supply comes in through their doors, especially the Pfizer vaccine due to its difficult refrigeration requirements. And, finally, as one of the largest facilities in that hospital system… well, you get the idea.

My oncologist thinks that I will likely get vaccinated in February, but to keep an eye on my health care portal messages starting now.

The trick to a quick vaccine rollout is that you have to keep moving forward instead of getting caught in bottlenecks like finding and contacting immune compromised patients. As a result, while the state is figuring out how to find and contact multiple myeloma patients in more rural areas, my BMT group will be reaching out and vaccinating us. I suppose this is another reason that all things being equal, you want to be near the research if you have cancer — a university-affiliate hospital is probably the best unless you live near one of the major cancer centers like Anderson, or Mayo.

Multiple Myeloma and Covid Vaccine

All three of the Covid vaccines approved for emergency use by the FDA are non-live vaccines. That is, the material in the vaccine is not weakened virus like the MMR vaccine is, so it cannot give you coronavirus, no matter how weak your immune system is. (If your immune system is too weak, however, it won’t mount a response which means the vaccine will be wasted. They might not give it to you right after ASCT, or even some chemo if your immune system is knocked too far down.) If the Covid was a live vaccine, they probably would not give it to myeloma patients at all, or at least not until they had studied it in the strongest of us.

These mRNA vaccines are actually a great advancement, and might prove useful for other future vaccines as well, which would be great for us myeloma patients.

Vaccine Covid Antibodies and Multiple Myeloma

One of the most interesting facets of getting the Covid vaccine with multiple myeloma for me is that I have already tested positive for antibodies to coronavirus despite never having actually developed any Covid symptoms. (Lucky, right?)

The oncology team still wants me, and all of the multiple myeloma patients who had Covid, vaccinated anyway. And, for bonus fun, they’ll be monitoring our blood draws to see if, how, and when people with multiple myeloma mount a response to the Covid vaccine.

So, while cancer patients like us won’t be skipping the Covid vaccine line, we won’t be at the end either, which is a nice change from last year, when we were put at the bottom of people to treat if there was ever a need to triage Covid care.

Covid Vaccine Reactions Multiple Myeloma

If you get the Covid vaccine and you have multiple myeloma, let us know how it goes. So far, the people I know that did get it report fevers, sweats, and pains, ironically, kind of like getting the flu. But, it only lasts for one or two days. The fevers are so common, that my doc even said if I got a fever after taking the Covid vaccine to just take Tylenol and get some rest, not call in like I’m usually supposed to if my temperature ever goes over 100.4 degrees.

Welcome to the post-Covid age, my myeloma friends.

Categories
Living with Myeloma

Pregabalin for Neuropathy

When I got blasted with melphalan last year as part of my autologous stem cell transplant (SCT), it chewed up the nerves in my feet leaving me with some pretty substantial neuropathy.

What Is Neuropathy?

You can find the official medical definition of peripheral neuropathy here. For, those of us with multiple myeloma, neuropathy is a pain and numbness, usually in the fingers and feet. It is caused by the chemotherapy drugs.

Velcade side-effects caused neuropathy in my fingers until my hands hurt so bad I told them to take me off it, and figure something else out. (This is why I switched doctors. You shouldn’t have to beg for your own quality of life.) It left me my feet mostly alone.

My fingers are largely better now. There is no pain, but there is a numbness or missing nerve sensation that makes things like separating two book pages, or counting out cards, or money difficult. I have to really focus, and rely on my sight as well.

pregabalin neuropathy pain

Neuropathy in Feet with Myeloma

These days, nearly a year after my SCT, my real difficulty is the neuropathy in my feet. I started, like so many patients with gabapentin. It seemed to work for a while, but the dose went up and up, until it wasn’t really working.

My current doc considers quality of life actually suggested medical marijuana and/or CBD. I need to look into that. In the meantime, I wanted the ease of a prescription.

He set me up with pregabalin. I haven’t had any pregabalin side-effects, which is very nice.

Pregabalin for Neuropathy Pain

Here we go with the sucky US healthcare system again. It’s a shame that Republicans can’t fight over how to make healthcare better, instead of just tearing down anything Democrats made. You don’t like Obamacare? Fine. Make something else, but quit pretending the nonsensical system we have in place doesn’t need any fixing.

You see pregabalin costs a lot of money of money because there is no generic version yet. It is sold under the brand name of Lyrica.

Fortunately, for me, I have pretty great insurance. It will cover Lyrica with some sort of deductible, and some sort of co-pay. As a cancer patient, those numbers are meaningless to me. I blew past my out-of-pocket-maximum in just days. All that matters to me are coverage limits.

In this case, my insurance will only cover 300 mg per day. I really need 400 mg per day to make my feet manageable. (Don’t get me wrong. This doesn’t bring my feet anywhere near to normal, but I can ignore the nerve issues… unless I step on something.)

Doctor versus Insurance Company

One of the reasons you want to have a good doctor who really considers patient care the most important thing they do, is because in situations like this, the only hope I have is for my doctor to do some sort of battle of words with my insurance company to get them to cover the 400 mg.

If he loses, I’ll make do with 300 mg and maybe see if I can get a double prescription for nortriptyline, which I have a prescription for, but it’s for bedtime. Supposedly, a side-effect of nortriptyline is that it makes people very drowsy. It doesn’t necessarily have that effect on me, so rolling out of bed with that, and then, doing the 300 mg pregabalin might just do.

That, plus always wearing shoes…

Categories
Multiple Myeloma Research

ASH Annual Meeting and Exposition and Multiple Myeloma

It is easy to forget that first and foremost, multiple myeloma is a blood disease. That means that in addition to being a cancer treated by oncologists, it is also right in the wheelhouse of hematologists.

The big hematology conference each year is the American Society of Hematology Annual Meeting and Exposition, or ASH Annual Meeting and Exposition.

This year, it’s the 62nd ASH Conference. Like most things this year, the conference was converted from a big meeting in San Diego, California to an all-virtual event to avoid issues from the Covid-19 pandemic.

multiple myeloma research

Hematology and Multiple Myeloma

Obviously, not all of the presentations at a hematology conference have anything to do with multiple myeloma, but a lot a research does get presented at the conference. There are numerous Twitter users that do a good job of getting out summaries and notes about various presentations that might be of interest to the myeloma community, and, of course, to me.

One of the topics that keeps coming up is particularly disturbing to me.

An increasing amount of research shows that daratumumab is very effective against myeloma in almost every stage of treatment. Of particular concern to me is this concept.

daratumumab mrd negativity
Daratumumab increases the length of sustained MRD negativity

Check out my review to see if Acorns is safe.

Dara and Me

If you’ve been following along with me, you know that last year, I was put on a dara and 10mg revlimid cocktail for my maintenance regimen post-ASCT.

We stopped the revlimid almost right away. I took four infusions of dara. During that time, my immune system blood numbers went down, and down, and down, until they basically hit zero.

Shortly thereafter I ended up in the hospital where otherwise trivial bacterial and fungal infections forced me into the hospital for pretty much the whole month of June.

My oncologist suspects that I had a rare reaction (Oh goodie, here we go, a rare cancer, and a rare reaction) to Daratumumab in which it affect my immune system, and apparently made me lose my stem cell graph. We had to reinfuse stem cells that were left over from my ASCT to get my immune system back.

So… unless something has changed, dara and me do not go together. This looks increasingly like a bummer as much of the research presented this year at the ASH conference shows how great dara is at treating multiple myeloma, in pretty much all phases of the disease, and how adding it to other standard treatments improves outcomes in myeloma patients.

What Next Myeloma Treatment

If it sounds like there isn’t really a point, and that I’m mostly whining, you are not wrong. Fortunately, there were a lot of other presentations that I haven’t even got to looking at yet. There may be alternatives, and there are definitely new things coming down the pipeline.

It’s hard not to be encouraged by sentiments like this:

Now, more than ever:

Live to the Cure.

Categories
Multiple Myeloma Treatment

MRD negative Multiple Myeloma Status

Who is your daddy!?

OK, I’m old, so that doesn’t mean what you think it means. I mean it in the Ace Ventura, “First I’d find a motive, then I’d lose 30 pounds PORKING HIS WIFE!” sort of way.

Fighting Multiple Myeloma

When I fought through my autologous stem cell transplant (ASCT) and its aftermath only to achieve “multiple myeloma not having achieved remission” as my official diagnosis, I tried to look on the bright side. My numbers were way down, and my M-protein stood at 0.6, which my oncologist mused might be from MGUS that I had prior to being diagnosed with myeloma.

No remission for me…

I asked my doc if that meant my stem cell transplant failed. He said no, and the numbers being way down were proof.

He didn’t sound like he believed it.

So, we started in on a daratumumab and revlimid treatment that proved disastrous for me. I spent much of the summer in the hospital, lost my stem cell graph, and had to get a replacement infusion of stem cells in what my doctor termed a “stem cell boost,” in order to restart my immune system that had failed all the way to 0.0 neutrophils.

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I stayed alive (luckily), got through all of the fevers, the night when I was drowning from the fluid in my lungs, and all the aching, needles, getting a port inserted, and frequent infusions of platelets, and blood transfusions.

Maybe that is what people mean when they say, “fighting cancer.”

But, what if there was a silver lining?

Multiple Myeloma MRD Negative

If you think about it, I essentially had back to back stem cell transplants. For the first SCT, they deliberately killed my immune system with powerful chemo in the form of melphalan. For the second SCT, my body spontaneously killed my immune system by overreacting to daratumumab (and exposed my body to a dangerous fungal infection… thanks for nothing 🙂

Either way, my immune system was cleared out twice.

The result?

The myeloma tests after checking out of the hospital showed no trace of multiple myeloma cells in my body.

That’s myeloma remission.

But, how much remission?

Certain tests are only so sensitive, so when those tests read zero, they send you for more sensitive tests to detect even the smallest amount of myeloma cells. My blood tests said zero, so it was time for a bone marrow biopsy.

However, this time, in addition to the usual bone marrow biopsy testing, they took some extra bone marrow and shipped it off for the most sensitive testing possible for multiple myeloma.

Measurable (or minimal) residual disease (MRD) refers to the small number of cancer cells that can remain in a patient’s body during and after treatment and may eventually cause recurrence of the disease. These residual cells typically cause no physical signs or symptoms and are present at such low levels that more refined and sensitive techniques are required to identify them.

https://www.clonoseq.com/the-importance-of-mrd/

In my case, a test called colonoSEQ, which they run on a bone marrow sample. This same test works on related blood cancers like leukemia.

ColonoSEQ can detect one single cancer cell among 105 healthy cells. The idea is that if this test cannot detect myeloma cells, then the amount of such cells in the body is so small that the patient can be said to have no myeloma, or remission. The technical term is minimal residual disease (MRD).

See my look at Acorns investment returns.

Unfortunately, multiple myeloma has no cure, and relapse will occur eventually in almost all cases, but MRD negative is the least amount of disease possible in the human body.

Guess who is MRD negative?

I guess that means I’m in remission.

Categories
Multiple Myeloma Treatment

Bone Marrow Biopsy Results Multiple Myeloma

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:

  • Diagnosed with multiple myeloma 18 months ago
  • Did standard revlimid, velcade, dexamethasone treatment for six months
  • Stem cell transplant 11 months ago (successful – partial remission)
  • Started maintenance mode of daratumumab and 10mg revlimid
  • Immune systems crashed – all maintenance drugs stopped
  • Spent two months in and out of hospital — lost my stem cell graph
  • Got “stem cell boost” four months ago
  • Multiple myeloma results started showing complete remission
  • Blood weak – numerous platelet transfusions and several blood transfusions
  • Neuropathy in feet – if only I could get that to go away, I’d be mostly normal

Interpreting Bone Marrow Biopsy Results Multiple Myeloma

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.

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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.

Variably normocellular marrow with trilineage hematopoiesis.

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.

No morphologic or phenotypic evidence of plasma cell neoplasm

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.

Peripheral Blood Results:

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.

There is no increase in plasma cells with no
monoclonal plasma cell population

Whoo hoo!

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.

Woot! Woot!

The Rest of the Bone Marrow Biopsy Results

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.”

Scattered kappa positive and lambda
positive plasma cells with appropriate proportions

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.

Good News for Multiple Myeloma

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!

What’s Next?

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.

Multiple Myeloma Life

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.

Categories
Living with Myeloma

Multiple Myeloma and Mental Health

Cancer is a tough beat. That being said, for the most part, I tend to keep my spirits up. Unfortunately, a large part of that relies on the optimistic belief that I’ll “get my life back,” somewhere in the future.

Cancer and Optimism

The truth is that I’ve spend most of the year-plus since my diagnosis weaker, and sicker than I have ever been in the past. The pain from the neuropathy in my feet doesn’t really seem to be going away. And, the cracks in that optimism start to appear.

Even before cancer, I found that it is all too easy to look up. The house that you want that is a little bit bigger, has a library, and pool in the backyard. The job that offers more money, more respect, and paid trips to the coolest conferences. And so on.

While looking ahead to these things is meaningfully motivating, it is also important to acknowledge what you’ve already achieved.

mental health myeloma cancer

The house on the quiet street with a nice-sized bedroom for each kid. The job that allows you to work from home while you have to juggle doctor’s appointments and bouts of sickness. The solid life insurance and paycheck that covers all of your bills and a little bit of fun.

The fact that your back no longer hurts so badly you can barely stand.

The fact that you can throw the ball to your son while he still wants you to.

The fact that you can be clever and interesting to your teenage daughter… at least in short bursts.

A loving spouse that may be one of the best caregivers of all time.

No Going Back

And, so while it is entirely possible that I won’t ever get my old life back, the reality is that the one I have is pretty wonderful in so many ways. I’m glad to be here, and I’m glad to keep soldiering on.

And, if it turns out I get “back” to whatever I had before, I’ll be sure to be grateful instead of automatically looking ahead. After all, there are always mountains that I could have climbed, 5Ks that I could have ran, and exotic places left to visit.

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

Outer Banks Beach Trip

I have multiple myeloma. It is a blood cancer that weakens the immune system. So, why am I flying across the country to spend a week on a beach on the Outer Banks of North Carolina? Because time marches on.

Beach Trip with Covid out there.

My kids are getting older. One of them will be leaving the house soon. I DO have cancer, which means that none of my days are promised to me, even more so than they are not promised to you.

Covid sucks, but with proper precautions, the spread appears to be slowing. My oncologist says to get an N95 mask if I can (it looks tricky) and to wear gloves on the airplane (will do).

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Longer Lockdown

Besides, I’ve been on lockdown longer than most anyone. I had my stem cell transplant in January and they told me not to leave the house for three months back then. — Plus I was throwing up all the time so I wasn’t really up for it anyway.

Long story, made short, I’ve been on mostly lockdown since January while most of you didn’t start until March.

Does that make me special?

Nope.

Does that mean that Covid will leave me alone?

Nope.

What it does mean is that I’m willing to risk certain death against taking all the proper precautions. Hopefully, all goes well and my quarantine will, for at least a week, be a sweet day at the beach.

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Categories
Multiple Myeloma Treatment

Cancer and CBD Oil

No matter what any CBD zealot tells you, CBD oil will not treat or help your actual cancer in any way. However, CBD can help many of the side-effects you get from from cancer.

I have multiple myeloma, a blood cancer. Like many of my fellow myeloma warriors, our cancer causes pain. CBD oil helps pain in some cases, but not all. It’s important to find out if CBD oil will really work for you.

Recommend CBD Oil for Neuropathy

One common reason to for cancer patients needing CBD oil is the pain caused by neuropathy. Neuropathy exists outside of the cancer population as well and has numerous causes. For cancer patients CBD is typically needed after chemotherapy causes neuropathy.

Neuropathy pain is tricky to treat. Some patients respond very well to some treatments, while others don’t respond to similar treatment. I take gabapentin three times a day. I know others who take higher or lower doses. Gabapentin is well tolerated in most people, so oncologists have no problem kicking up the dosage.

Sometimes though, even high doses of gabapentin don’t help. For me, the gabapentin helps quite a bit, but I still have significant pain in my feet. As you can imagine, this is limiting when it comes to being able to walk long distances or stand in line. This is a particular problem for my desired cancer comeback trip to Disneyworld and Universal Studio.

My physical therapist recommended CBD oil, but only after saying check with your doctor first. My oncologist said it was a good idea, and couldn’t hurt.

CBD Oil and Neuropathy

I live in Colorado where CBD oil, and marijuana itself are legal. It’s pretty easy to come by, maybe too easy. Both my PT and my doc warned me that CBD oil is not well regulated, and many oils are mostly just oil.

The solution is to buy CBD oil from a dispensary, instead of Amazon, or the back of the grocery store. The catch is that once I got to a marijuana dispensary, the very knowledgeable, and very honest, sales person informed me that to actually penetrate into the nerves and help with neuropathy, I would need higher concentrations than available as “recreational marijuana.” What I needed was “medical marijuana.”

I didn’t realize there was a difference other than licensing and taxes.

Effective CBD Oil and Neuropathy

The salesperson (excuse me, “budtender”) also recommended a tincture of at least 2,000. (I forgot the units). This got me wondering:

  • a) is CBD oil really effective for neuropathy?
  • b) if CBD oil is effective for neuropathy what dose is required?
  • c) is CBD oil not effective for neuropathy?
  • d) if CBD oil is not effective for neuropathy what is?

Like most people my first instinct was to Google. The top several results were dubious at best, composed of phony colleges, institutes, and organizations. Fortunately, the NIH was there to save the day.

The NIH, or National Institute of Health is a government organization that offers actual research studies on numerous topics, including legitimate CBD oil research and real CBD for neuropathy research included. Of course, this result is half way down the page, because the NIH does not spend big money and time on using SEO to rank highly for CBD topics.

Real CBD Oil for Neuropathy Research

One of the results I found was about the effectiveness of topical CBD oil on neuropathy of the lower extremities. In other words, does rubbing CBD oil on your feet help neuropathy pain?

There are two important things this true research about CBD oil for neuropathy in the feet tells us. The first is that yes, it does help neuropathy pain. Second, it tells us what dose they used. Most published research happens after the scientists involved already put some effort into the parameters. In other words, they already had and idea of what does would work for neuropathy of the feet. The does in the study was 250 mg CBD/3 fl. oz.

This means I’m looking for that dosage of CBD oil to be effective on foot neuropathy. Where do you find CBD oil for neuropathy and what does it cost? Most importantly, does CBD oil work for neuropathy from chemo?

I’m getting ready to find out. I’ll let you know.