Oh for crying out loud, here we go again — an article on early treatment for smoldering myeloma folks who have no CRAB symptoms, not One Single One.
My favorite thing to read.
You can read the entire article (it’s not long, just a couple of pages) here: http://goo.gl/aHdpS6
Interesting excerpt: Before enrollment in an SMM treatment trial, patients should be aware that the “watchful waiting” approach remains a legitimate strategy given the body of current evidence. It is important to note that there is significant discordance (>70%) in the overall SMM patient risk classification and that prospectively obtained risk models are not yet widely in use. Thus, better predictive models and biomarkers need to be validated prospectively before one can determine an individual’s lifetime risk of disease progression with certainty. Despite recent advances, the standard of care of SMM remains a “watchful waiting” approach, as larger international randomized studies and longer follow up are awaited.
Yes indeed, I fully agree that it is important to note that MORE than 70% of the experts disagree on how to classify us smolderers. MORE THAN SEVENTY PERCENT??? Wow, that’s so amazingly encouraging…
Well, at least these researchers lists “treatment toxicity” for SMM patients as a “concern,” since there is no way of predicting who might progress to active myeloma and who might remain at this stage forever.
They also mention the fact that current treatments can give rise to “serious toxicities.”
This part of the article, if not the entire article, shows, at least to me, how doubtful and hesitant our myeloma experts are, and that was very interesting to note. At one point, e.g., they wonder “whether the benefits of treatment of SMM are justifiable in the light of the risks involved.” (You can imagine what my answer would be…)
And it is precisely the discussion about the risks involved that most intrigued me…So let’s have a closer look at the myeloma cell subpopulation section (at the beginning of page 1770).
First, what are these subpopulations? The article provides the answer: “at MM diagnosis, recent data inform us that there is no single clonal population of malignant plasma cells but rather different subpopulations that are branching off an original clone.”
While the researchers themselves admit that very little is known about HOW these subpopulations interact, it seems that they COMPETE for survival in the tumor microenvironment).
I can’t help it — my mind is now filled with battle scenes from the movie “Braveheart” — swords, axes, clubs, spears, heads bashed in, blood, guts, body parts everywhere…except in this case we have myeloma cells fiercely charging and whacking away at other myeloma cells…But okay, I’m getting a bit carried away…
Let’s step back for a moment and imagine that the subpopulations of myeloma cells in SMM folks are in a sort of delicate balance: there are groups of really nasty evil slobbering myeloma cutthroat criminals floating around and coexisting with groups of relatively innocuous myeloma dumbbells. They’re all just hanging out, without causing any serious injuries or damage, at least for the time being.
But then, at a certain point, all these subpopulations get smacked over the head with a bunch of chemo drugs.
The first to go are the weakest ones.
This means that we are left with the potentially dangerous bad cutthroats who’ve managed to escape the chemo bombs…
Let’s also not forget something that I don’t think the article mentions at all but that is CRUCIAL: chemo bombs don’t differentiate between good and bad cells. This means that the tumor microenvironment has been changed radically now: the weak myeloma cells are gone…but so are the good cells…
So what happens then? Without their weaker rivals, the cutthroats have more room in which to move around in as well as more opportunities to proliferate and wreak havoc in their newly-changed surroundings. In my Braveheart scenario (which is based on what I have read here and elsewhere), this seems to fall under the expression “clonal evolution” used by the researchers in that helpful red and green table, the one with the red question mark on top.
I don’t know about you, but I find this potential scenario really freaky…
Therefore, given all these unknowns, given all these risks, why (OH WHY????) jump the gun and intervene before it’s necessary? It simply makes ZERO sense. Let’s summarize the main points:
- The experts themselves can’t agree on how to classify us smolderers.
- There is no way of knowing what happens when chemotherapy is administered to someone who has no CRAB symptoms.
- Treatment toxicity is a real concern. Not a potential one.
- Last but not least, it seems that the potential for strengthening the super evil, stronger, more resistant-to-treatment myeloma subpopulations is E-NOR-MOUS.
Too risky. Too dangerous.
In sum, this article merely reinforces my conviction that early intervention — both in a clinical trial setting and, worse, in a non-trial setting — sucks…
I love reading your blogs! I just came back from a visit from my oncologist …don’t have to go back to see him for 6 months yeah!!!! still do the blood work every three months but just call for results next time.
I have been taking Curcumin 8 grams for over a year now and since I started taking it my numbers have gone down. The hematologist I was seeing last Thanksgiving was concerned about the jump in my numbers and suggested beginning treatment. Thank God I went for a second opinion! I shudder to think about how sick I would have been from the treatment. I read your blogs and follow your protocol and hope to have the same success you have had.
Thanks Margaret…Merry Christmas!
Interesting, I did read the study and coincidentally, I just had a bone marrow biopsy that indicated about 23%. No CRAB indicators but high free light chains but I have been able to bring down from my previous high with my curcumin regime (8g/day). Still need to do some work here but now trending in the right direction over past 9 months.
My oncologist came right out and told me that I have myeloma (in spite of the absence of CRAB) and , recommended high dose chemo followed by autologous stem cell transplant. I was floored by this, naturally going for another opinion.
I seem to have some similar markers as you have indicated you have. At this moment I am considered on the edge of smoldering and in the watch and wait phase.
My last blood test/MRI indicated no CRAB symptoms, my biopsy indicated 20% but my light chains are very high. As you may be aware, at the ASH 2014 conference in December another criteria was added to CRAB as an indicator of smoldering versus active. The ratio of the lambda/kappa numbers must fall below 100. I was at 99.5. Not good! I go for my next blood test in about 4 weeks. If I fall at 100 or above I will be considered active and my oncologist will want to start treatment.
I have begun researching curcumin. I, naturally, want to stay in the smoldering stage and wonder if curcumin could help with that. So my question is….when did you begin taking curcumin and which numbers seemed to improves since? I am wondering if this supplement could help change my numbers in a short period of time.
sorry, I haven’t checked the site for awhile and missed your email. I think curcumin can change your numbers in a positive way. First time I started taking curcumin , I was able to reduce my FLC by about 40%. I was taking about 6-8g daily. FLC were stable for about 18 months, then I stopped. Saw a slow rise in the FLC over that period of time. Started again after my FLC topped out at 262…trend has been down since then and I’m getting monitored every 4 weeks. Feel free to give me a personal email, I’d be happy to chat further: email@example.com
Hi Kevin: I always find it noteworthy when a blogger, such as yourself, notes their numbers became unstable when they had stopped taking curcumin. All anecdotal but definitely something to think about. My update: At my last visit to my oncologist I was told that because my Kappa/Lambda ratio had jumped from 20 in Sept to 99.5 in Dec (100 is the break point to full blown active myeloma) she fully expected me to begin treatment with the next blood test and even gave me an overview of my treatment protocol. I was devastated since I was just diagnosed in August with smoldering and hoped for some time. That was January 22nd. Desperately remembering this site I logged on and began researching curcumin and immediately began 6-8g with bioperine. I figured I was beyond help but, what the hell? I got my test results last Thurs (3 weeks on curcumin). My ratio went from 99.5 to 23!!!!!!!!! OMG, OMG, OMG…LOL!!! My oncologist, who has been a leading myloma specialist for 20 some years seemed a bit taken aback. I asked her if that means I might get more months….she smiled (she never smiles) and said it isn’t often that she gets to tell someone she expects me to get more like several years! Was it the curcumin??? Don”t know, but I’m a believer.
Would love to hear how your doing now Karen!
Karen, WOW! Absolutely wonderful news.