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Multiple Myeloma Treatment

Elotuzumab Multiple Myeloma

Empliciti is the brand name for elotuzumab. (*Adds elotuzumab and empliciti to autocorrect dictionary*) I will be using elotuzumab and Empliciti interchangeably so that I can focus on facts and not what elotuzumab is called.

I will be taking elotuzumab soon, so it is time to review elotuzumab and look at potential elotuzumab side effects and dosing for multiple myeloma treatment.

Why Elotuzumab or Empliciti

As I understand the term, my current multiple myeloma status is MRD negative. The short-short version is that there is no MRD detected anywhere in my body, even by a test so sensitive that it can detect just one cancer cell among one-million cells. This is good news.

In all of my tests since they changed my patient status last fall to multiple myeloma in remission, my myeloma markers all come back negative, or in the green (normal) range. This is also good.

But, in every monthly meeting with my oncologist, as he stares intensely at the screen with my numbers on it, he fidgets terribly with his fingers as he reads off the good news. He is nervous.

And when he is nervous, I’m nervous.

I’m still in remission and my tests all still say zero, so we’ve been working on my other health issues. I’ve stopped taking the powerful antifungal, posaconazole. My blood pressure is finally coming down from ridiculous highs.

I got my sleep apnea results back, and apparently I have “severe” sleep apnea, so I’m getting a CPAP machine, but it will take a couple of weeks. When it comes to sleep there isn’t much of a sense of urgency. After all, you won’t die from crummy sleep so… Apparently, sleep apnea can cause higher blood pressure. Who knew?

My blood pressure is mostly under control with a combination of lisinopril and carvedilol, but my guess is that if the sleep apnea thing works, then maybe that is one more medicine I can stop taking. Besides, maybe I’ll get deeper, more restful sleep.

Check out my Stash vs Acorns and more review.

My hemoglobin shows me as anemic, but just barely so. This has been the big concern. Anything my oncologist can give me will lower my blood counts, so having normal, stable, healthy blood counts first is ideal.

So we wait.

But, he’s nervous.

Elotuzumab Maintenance for Multiple Myeloma

So, the issue is that while my myeloma is zero now, it can explode back to very-not-zero in a short period of time. The way to avoid this is with some maintenance chemotherapy.

The idea is that if a cancer cell does try and start something, there will already be chemicals in my body ready to kick it in the teeth before it can even get started, instead of it getting a running head start in between monthly (or longer) monitoring.

Enter elotuzumab.

The similarity in the elotuzumab and daratumumab names is not a coincidence. The drugs are related, but not the same.

As my doc explains it, elotuzumab is a relatively benign chemotherapy that does a great job at keeping myeloma from increasing, but a bad job at lowering myeloma counts. Since I’m already zero, stability is good.

We didn’t start it today, but it is coming next month. He gave me what he called, “a bunch of medical marketing material.”

I like my oncologist. 🙂

elotuzumab information dosing side effects and package insert
Elotuzumab package insert and marketing material

Why Elotuzumab?

I need to understand my myeloma treatments and the chemo they are giving me, including why I take elotuzumab for multiple myeloma maintenance.

The short answer is that daratumumab didn’t work for me, or rather it worked too well, taking out my immune systems along with myeloma. Daratumumab is the darling of the multiple myeloma treatment world. Papers are starting to call for daratumumab to be a first-line treatment, adding it to the standard Revlimid, Velcade, dexamethazone treatment regime. Elotuzumab is the red-headed stepchild of daratumumab.

Elotuzumab Dosing

According to the elotuzumab package insert and brochures I received, elotuzumab dosing usually involves dexamethasone and either Revlimid (lenalidomide) or Pomalyst (pomalidomide). My oncologist says we’ll be adding Pomalyst.

So Empliciti dosing is done by infusion, whereas Pomalyst and dexamethasone are taken as pills.

How Does Elotuzumab Work?

According to the medical marketing material supplied by Empliciti’s manufacturer, Emplicity helps mark, or identify myeloma cells making them easier to find. Then, it activates NK cells (Natural Killer cells) which attach and destroy multiple myeloma cells.

Sounds good, but apparently it doesn’t work at well as daratumumab. Maybe, in my situation that doesn’t matter since I’m starting at MRD negative. All I need is to make sure it doesn’t come back. I don’t need it to root it out.

Elotuzumab Side Effects

Like all chemotherapies, Empliciti can cause other cancers. There really isn’t anything you can do about that if you are taking chemo.

Other side effects include liver problems, fever, rashes, trouble breathing (fun!), dizziness, light-headedness, and as always, infections.

I’m already familiar with the dexamethasone side effects. I guess it depends on the dose. I tolerate the smaller doses pretty well.

I will have to look up Pomalyst since I have never taken it before.

As always, we’ll hope for the best.

Elotuzumab Schedule

The schedule for Empliciti dosing looks familiar to my old Revlimid schedule, with a 28-day cycle.

For the first two months, you take elotuzumab once a week via IV infusion. You take dexamethasone every 7 days, on the same day you get your empliciti infusion. You take pomalyst every day. Starting on day 23, you stop taking everything (no dex or pomalyst) until the next infusion. Basically, a one-week off period.

After the first two cycles, it goes monthly. You get the elotuzumab infusion on Day 1 and take dexamethasone on Day 1 and then every 7 days. You take Pomalyst every day, stopping on Day 23, and taking a week off from all meds until the next cycle where you repeat the same dose schedule.

About the Author

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

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.

Check out my Acorns vs Stash review

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.

Interested in Zelle? Check out Zelle reviews.

At least the summary doesn’t say anything overly scary in layman’s terms, but that doesn’t mean it isn’t bad (or good). It does however, have some sentences that are the conclusions. It’s just that I don’t understand them. We’re going to google it, but it isn’t as easy as it sounds.

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.