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Multiple Myeloma Treatment

Generic Revlimid

Generic Revlamid, or generic lenalidomide is coming, but it may not help as much as cancer patients would hope.

Revlimid is the brand name for the drug lenalidomide. Revlimid is a key drug for the the treatment of multiple myeloma. Until recently, Revlimid was produced by Celgene. However, Bristol Myers Squibb spent over $70 billion purchasing Celgene, in no small part for the billions of dollars it earns selling Revlimid for over $10,000 per month to each cancer patient that requires it.

Thankfully, Americans with insurance don’t have to pay those prices, but it does mean that insurance companies are paying enormous expenses which then cause it to raise rates.

Revlimid Patents Keep Prices Sky High

Revlimid prices are so high that members of Congress singled out the company for its outrageous charges. Of course, pharmaceutical executives are happy to sit stone faced in front of Congress member who will actually do nothing, and don’t have the votes to pass any sort of law that would do anything, if it means they can earn $3 billion per quarter selling Revlimid at those prices.

The only hope for cancer patients is the entry of generic drugs. That was mostly quashed last year when the patent office refused to invalidate three patents that keep generics out of the market.

multiple myeloma prescriptions generic Revlimid cancer drugs

Generic Lenalidomide Will Be Very Limited in 2022

Thanks to that PTO decision, Celgene, and now Bristol-Myers, which bought Celgene last year, were able to drive favorable settlements with generic manufacturers. No generic lenalidomide/generic Revlimid will be sold in the U.S. in 2021.

So far, there are three generic makers who will begin production of generic Revlimid next year in 2022. Each one is limited to production of single-digit percentages of the overall production of Revlimid. That means that generic lenalidomide will be limited to probably 20% of so of the overall market.

That means that either generics will be hard to find, or that they will sell out quickly, running out early in the year.

The silver-lining, is that all three company’s production limits increase each year until 2026, when the caps are removed and generics can actually fill the market and, at long last lower prices for Revlimid.

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Multiple Myeloma Research

Latest Multiple Myeloma Research Guide

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.

Multiple Myeloma Treatment Definitions Cheat Sheet

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

New Multiple Myeloma Research

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:

A novel BCMA PBD-ADC with ATM/ATR/WEE1 inhibitors or bortezomib induce synergistic lethality in multiple myeloma

Harnessing the Immune System Against Multiple Myeloma: Challenges and Opportunities

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?)

Actors on the Scene: Immune Cells in the Myeloma Niche

Alternative strategies include the use of agents to disrupt BM-myeloma cell interactions. One of these agents is elotuzumab, a humanized mAb that binds to SLAMF7 (family member 7 of the signaling lymphocytic activation molecule), an immunomodulatory receptor expressed on several hematopoietic cells, including myeloma cells and NK cells (160162)

Actors on the Scene: Immune Cells in the Myeloma Niche (nih.gov)

Immunotherapy in Multiple Myeloma

Multiple myeloma: the (r)evolution of current therapy and a glance into the future

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

Immune Functions of Signaling Lymphocytic Activation Molecule Family Molecules in Multiple Myeloma (nih.gov)

Categories
Multiple Myeloma Treatment

Myeloma Chemotherapy

Myeloma 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 nice medical word for targeted poisoning.

Chemotherapy side-effects can take a while to build up in your body. 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.

myeloma chemotherapy 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 some other 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.

But, even if it works out as a net win, you still killed a bunch of healthy cells, and your body needs those cells to do things.

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 patient’s 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 as a normal standard of care, they’d make a larger pill. But, only us cancer patients take this much at a time.

I take dexamethasone 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.

Wondering about Credit Karma?

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. Welcome to cancer medicine.

Many patients get some form of sleeping pill that helps, but cannot overpower the second day of taking dexamethasone in a row. I have temazepam, it works sometimes, but not on Day 2.

Velcade and Myeloma

Next up is velcade. I’m not sure what dose of velcade I get. It is an injection that I go into the clinic twice a week 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 insurance plan out-of-pocket maximum the first week.

It just takes a while for all the computers to update. In the meantime, I have to make payments, and copays, and so on, and then wait for the refunds to come in the mail.

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. I can’t shuffle a deck of cards anymore.

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 think 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 grow 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. Having cancer without insurance is a big problem in America.

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.

It 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.