I’ve always wondered if I would have been better off knowing that someday I might develop multiple myeloma…or any other disease, for that matter.
Before I go on, I want to tell you a short personal story: about 25 years ago I found out that one of the students in my M.A. program was a psychic/fortune teller. I also found out that she’d told some interesting things to some of my colleagues. Well, I’m a born skeptic, but I was intrigued, I admit. And so one day I asked her if she’d tell me my “fortune,” too. She agreed (very nice lady, btw). So off we went, all the way up a hill overlooking the campus, far away from everyone. I don’t remember much about our encounter, but I do recall that she first looked at my hands and then held them for a while. She told me a bunch of things, some of which she couldn’t possibly have known, ending with this ominous statement: “You won’t die of old age.”
I remember feeling very uneasy…and at a loss for words. I’m certain that I didn’t ask the obvious follow-up question: “well, what will I die of, then?” I’m such an inquisitive creature, especially now, that I sometimes regret NOT having asked that question…
Okay, back to the reason I’m writing on this rather peculiar topic: yesterday afternoon I read a very interesting Harvard Gazette article on a group of Harvard and MIT researchers who have discovered “an easily detectable, premalignant state in the blood,” which identifies those folks who are more likely to end up with blood cancer: http://goo.gl/KUvF8V
Interesting read, don’t you think?
So let’s say you are in your 20s — the same age I was when I was told my “fortune.” You go in to have blood tests and find out that you have a 10% risk of developing blood cancer at some point in your life. Then, after decades of worrying and fretting and whatnot, you turn out to be as healthy as turmeric root. Unless my math is totally off, in fact, about 90% of the folks with the mutated cells will NOT develop any kind of blood cancer…
Now, wouldn’t it have been better NOT to have been told in the first place? Is it really worth it to go through life with a perhaps nonexistent sword hanging over your head?
That said, if I had known about my risk factor AND about curcumin long before I was diagnosed with MGUS, I wonder if things might have turned out differently. Would I still be at the MGUS stage? Or would I not have developed MGUS at all?
Anyway, I’m curious to know what the researchers will come up with next. If they could find a way to stop the subset of naughty cells from developing…Well, that would be a great bit of news indeed!
I digress a little. But this article made me think of another article recently (on FB), that the favorite quote in it for me was “Doctor, don’t be about me without me.”
I like the medical community providing me with as much information as their technology will give me and giving me all of their wonderful knowledge; then give me options and let me be a participant in my care. That is why I love your blog.
I agree I want to know everything and Margaret, that may have meant an accident, too……I got genetic testing…and changed many things in my life and my M spike is in the MGUS range and has not increased in 10+ years…..I met you and started Curcumin 10 years ago, thank you for your friendship and all the info that keeps all of us going. Ha, I’m gluten -free and my Oncologist who laughed at me for changing my diet is now gluten-free also…knowledge is power…
I too have MGUS and even though it is going in the wrong direction since the last 4 years, I will outlive the disease hopefully. I too am now on a gluten free, curcumin overload diet and I feel great and will continue following this approach. Going gluten free is no big deal, it focuses on vegies and good protein. So I will keeep going and going
It seems like the Sword of Damoceles having the knowledge & always hoping that there is no progression. In March 20l5, I hope 2B still smoldering & of course knowing you and starting the curcumin is wonderful. BTW, I did a few months with the Curcumin & Boswella to see if in that quarter, if my IgG would level would come down. It did slightly, so hard 2 know if there is a correlation with that or just continuing on my usual regimen of curcumin with bioperine minus the boswella. It all comes down in my mind, that knowledge from all sources available (esp. with your input) has made me feel slightly less vulnerable yet always concerned for the other shoe 2 drop as the expression goes!
In March 20l5, I will be smoldering 4 yrs..meant 2 include that in my previous note.
I discovered my Smouldering Multiple Myeloma by a blood test done for other reasons. I checked several blogs/sites and was very impressed with Margaret’s incisive analysis and cogent comments about various articles. Upon her advice I started taking Curcumin about 4 years ago.
Although my IgG is quite low I have remained well with no symptoms and so far no progression to frank myeloma. Fingers and toes crossed while I write this!!
I have no way of knowing for sure whether the Curcumin is keeping me stable or not. I thought of stopping it for a while to see any change in my blood parameters to determine if it really is making a difference. But I am too scared to disrupt a good thing and will keep on taking it forever!
and right you are! My husband was diagnosed in 1994 as having a “gammapathie bénigne”, then MGUS, then he had a peak of IgG, underwent 2 VAD, then tandem autologous stem cells transplant, was fine for a few years, started 8g curcumin when things got worse again -in june 2009- but the numbers had become too high so he had 2 years revlimid – still with curcumin and, stopped Revlimid; contrarily to what the doctors predicted ,(no Revlimid = faster relapse) , there has been no relapse since and he has been fine and very fit, on 8 g curcumin + boswellia+ashwagandha .
So my idea is that in HIS case, nutriments are just perfect so long as the cancer is kept low ; he’s been taking them for 6 years non stop and sure doesn’t feel like stopping them! So keep the good work, you too!
I am glad I found out about my very small spike, and the various other poor markers. It has helped me keep focussed on my health, and eating right (or at least better).
They have not been able to find the spike at all for the last three years, and in the latest tests my very poor kappa/lambda ratios had suddenly moved into the normal range. So officially I don’t even have MGUS now, just the IgA deficiency hasn’t moved. I have been gluten free for years, and have been gradually moving towards more primal diet (ie, less processed foods, less grains, less sugar, more home cooked meat and veg).
Either it has helped, or I have just been lucky. I doubt I would have changed my diet without knowing my markers, and I doubt the markers would have improved if I hadn’t improved the nutrient density of my diet.
Can you please tell me what was your kappa/lambda ratio before improvement? Mine is 4.7 and the m-spike is .3. I would like to know more about your protocol if you don’t mind.
Sometime the year after my husband was Dx and we had the cliff-hanging 3 months in hospital (I’m not sure if before or after the first of two full surgeries, but well before the kidney crash & temporary dialysis fiasco, And before SCT) a friend took me off on a girls’ weekend and we ran into a Tarot card reader. The death card turned up in my cards and my friends’ faces went pale. Somehow I knew immediately that it didn’t mean … ANYTHING…. about my life or Van’s. And really, it didn’t, that was enough years ago that we’ve lost perfectly healthy friends in the meantime.
On the other hand, my family is convinced I am getting feeble minded – they were over-protective when I planned things on my own in Guatemala, I KNOW they talked about it… but I am confident enough to know I’ve always had some attention deficits and I’m planning to get tested – I don’t think I have Alzheimers, but if I am in line for it, yes, let me know. My plan is to work on being the happiest person who ever ended up in the Alzhiemer’s unit, and it destroys happiness so I’m going to need all the practice I can get! Meanwhile, yes, I’m taking curcumin, even the brand recommended as having the best blood-brain barrier crossing capabilities – maybe it works, maybe I don’t need it, but even if I am happier just because of the placebo effect, I call that worth it 🙂