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.
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.
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 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.
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).
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.
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
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.
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!
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.