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

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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

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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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.

Categories
Multiple Myeloma Treatment

Myeloma Chemotherapy

Chemotherapy generally starts out pretty well for a lot of myeloma patients, depending on where they were in the course of the disease when they got diagnosed. For weeks, friends and family remarked on how well I looked. It seemed like nothing had changed.

It turns out that the various myeloma chemotherapy drugs all have huge possible side effects. That isn’t surprising considering chemotherapy is essentially a big word for targeted poisoning. Its’s just that they can take a while to build up. You see, if you lose 20,000 healthy stem cells, your body has more. But, if you lose another 20,000 the next month… and the next… well you get the idea.

healthy cells chemo
Hello, little cells… the chemo drugs are here… AGGGHHHH!!!

All chemo drugs are poisons. They kill both healthy cells and cancer cells. In general, they target fast dividing cells. Cancer cells divide very quickly, but so do a lot of important cells in your body. The hope is that the drugs kill cancer cells faster than healthy cells, thereby giving a net win to the body overall.

Chemotherapy For Myeloma

For multiple myeloma, the front line of chemo usually consists of dexamethasone, velcade, and revalimid. There are many variations depending upon the patients circumstances and things like allergies and other reactions, but my oncologist calls this combination the peanut butter and jelly of myeloma treatment.

Dexamethasone and Myeloma

Dexamethasone is a cheap steroid that has been around for years. It is usually administered in small doses. The biggest size pill is 4 mg. For multiple myeloma patients, the dose is 20 mg. That’s five of the highest dose they make. If people actually took this dose, they’d make a larger pill. I take it on a sort of bizarre schedule of on two days, off one day, on two days, off the weekend. Either way, that’s a crap ton of dexamethasone.

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When you take a lot of steroids, it gives you energy and power. It also keeps you awake. I take the first dose and spend the night with very little sleep and very little tiredness. I am invincible!

But, when the steroids leave your body, it causes a terrible energy crash. Think chugging Red Bull and eating sugar all night and then the crash that comes after and multiply it by 10. This is where they start giving you medicines to fix the problems caused by the medicines they gave you before. Many patients get some form of sleeping pill that helps, but cannot overpower the second day of taking dexamethasone in a row.

Velcade and Myeloma

Next up is velcade. I’m not sure what dose of velcade I get. It is an injectiom that I go into the clinic for. They draw my blood. Then, we wait until the results show up saying that it is okay to give me the velcade without triggering a major medical event, or outright killing me.

I got a really nice talk from the “financial counselor” at the clinic about the bills I would be getting. Fortunately, I’m lucky enough to have good insurance. As near as I can tell, it is $4,000 per shot… I go in twice a week. I hit my out of pocket maximum the first week. It just takes a while for all the computers to update.

Velcade causes neuropathy. My fingers hurt. The tips are less sensitive. It’s not that I can’t feel them, it’s that they seem a tiny bit numb, like if they were minorly burned. I can touch stuff and type, but I have trouble being able to tell if there is one piece of paper or two. I can’t really feel the distinction. If there are two pages, I have trouble putting my fingers in the right place to separate them.

You should be starting to get an idea about how these drugs are not subtle.

Revlimid for Myeloma

Finally, revlimid is a relative of the drug thalidomide. Yes, that thalidomide. For those of you too young to be in on the “joke” thalidomide was a drug given to pregnant women in the 1960s to help with morning sickness, insomnia, and other stuff. The punch line? It can cause major birth defects.

So, what am I doing taking a version of this drug in 2019? Killing cancer cells.

I take the 25 mg tablets. I guess after my stem cell transplant I will take 10 mg tablets as part of maintenance mode, so I guess 25 mg is a lot. I take it on weekdays for three weeks, then I take a week off. I’m not 100% what this does. Maybe the idea is that if I stop poisoning myself for a week some of the healthy cells will come back before I die.

In order to get revlimid I have to answer a series of questions both with a pharmacist, and with a representative of the company that makes it. All of which are recorded. Essentially, I have to say that I’m using birth control (if sexually active with a woman with a “functioning uterus”). That I won’t share my medication, and that other people shouldn’t touch it. In other words, if a baby shows up with birth defects around me, and I try to sue, they have dozens of recordings of me saying it’s my own fault because I knew better.

As a man, I get off easy. Women have to take a pregnancy test each month.

Oh, and by the way, it costs $10,000+ for each month’s supply.

Myeloma Chemo vs Other Cancers

It turns out that I don’t know very much about cancer in general. Taking pills and shots while walking around doesn’t seem like the chemotherapy I see in movies and on TV shows. I guess I get the more typical chemotherapy experience in a few months when I do the stem cell transplant and they kill my immune system (stronger poison for better health!) and I spend a few weeks in the hospital.

I could be worse. I could have pancreatic cancer. As far as I can tell that’s the worst one. I’ll do more research when me and my dexamethasone can’t sleep.

Categories
Multiple Myeloma

Brian Has Multiple Myeloma

Cancer.

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.

Multiple Myeloma

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.

Getting Rare Cancer

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.

Why Another Website

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.

Multiple Myeloma Resource Guide
Multiple Myeloma Resource Guide – 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.

multiple myeloma resource guide

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.