A myeloma list member (thank you!) posted the link to a January 17 BBC story (see: http://tinyurl.com/2mol2c) about four-year-old identical twin girls were born with leukaemic stem cells (STEM CELLS!) in their bone marrow.These cells contained “a mutated gene, which forms when the DNA is broken and rejoined at another point. The pre-leukaemic cells are transferred from one twin to the other in the womb through their shared blood supply. But it takes another genetic mutation in early childhood for the cells to cause disease. This second mutation, which may be caused by infection, occurred in Olivia but not Isabella.” In fact, only Olivia developed full-blown leukaemia (acute lymphoblastic leukaemia or ALL). UK researchers examined the twins’ blood, and their findings were published in the January 18 issue of "Science." The abstract can be read here: http://tinyurl.com/285qjn.
“About 1% of the population is thought to be born with pre-leukaemia cells. Of these, 1% receive the second "hit" that leads to cancer.” Even a simple cold, from other articles that I read online, is apparently able to trigger this second mutation.
Well, this is all very interesting. I remember that, when I was eight years old, my family doctor here in Italy was convinced that I had leukaemia. Unfortunately, my blood tests from that period are probably buried in a box in my parents’ garage in the U.S., but if I am able to locate them some day, they might yield some interesting information that could be relevant to my having myeloma (inactive) today. Could I possibly have had a “second hit” (later in life) that led me to develop this cancer? Well, this is just a random thought on a lazy Saturday evening. Nothing more. And indeed, now that I have written it out, it appears to be unlikely.
But the next time I visit my parents, I will comb through their garage, just in case.
Hi Margaret,
You describe your SMM as a “cancer” yet your blood numbers are very similar to mine and as far as I know I have MGUS and I’ve been told it’s not a cancer – just a “pre-cancer” marker. I don’t think the current MM classification system is particularly useful. It seems to me that someone either has an aggressive form of the disease or they are stable. If you are stable, it’s a matter of semantics whether it’s a cancer or not. The important thing is obviously to keep the paraprotein levels stable or, better still, get rid of them altogether. Like the twins, maybe we have pre-myeloma and we need to avoid the infection that will cause the second mutation.
By the way, this is also how type 1 diabetes is thought to occur.
Paul
My blood test results are quite good, you are absolutely right about that, Paul. But my BMB test results have been high in the past few years. In 2005 my BMB was 50%, last year it went down to 40%. Still high. That’s why I am in the SMM category, not MGUS. However, I will ask my haematologist to classify me when I see her next month.
🙂
Margaret
As far as I know the BMB result very much depends on where you take the sample from. I’ve had a similar discussion with LPC whose BMB has shown a much greater variability. This is one reason why I have so far refused a BMB. It makes no sense to me to use the BMB as part of a classification (which is probably irrelevant anyway) when the results of the test are so unreliable.
I would ask your haematologist to de-classify you 🙂
Paul
That’s very true. It does depend on where the sample is taken, since myeloma cells tend to clump together. Still, 50 and 40% are high percentages (not that I lose any sleep over ’em, mind you!). Oh, in 2003 that percentage was 5-8%, by the way. I have had three BMBs to date and will resist having another one any time soon, I tell ya!
Hmmm, not sure I want to be de-classified, Paul. I think I would like to keep some of my…”class.” 😉
Margaret
I found your comments regarding parthenolide and DMAPT very interesting, especially the idea of this as a supplement-to-try. However, since parthenolide itself has essentially zero oral biovailability, do you intend perhaps to try the water-soluble DMAPT? If so, how much and from where? Any data in that regard?
Thanks as always,
George
I try to answer most blog comments privately, but today I am out in “public” for some reason. 😉
Anyway, yes, George, I am going to ask my haematologist if she can get her hands on some DMAPT (doubtful, but it’s worth a try).
If not, I will probably mix parthenolide powder with a fat, perhaps even the cocoa mass concoction I used to take my curcumin powder. That is how I hope to enhance its bioavailability. The combination of fat and sublingual delivery. This all depends, of course, on how my last set of tests went (I will know on Jan 31).
I will write about this topic more at length as we get closer to March. And who knows, by then something else may have popped up…
Margaret
I didn’t mean you should lose your class Margaret. I would never suggest that. I’m not a linguist but I always thought de-classified meant “no longer a secret”. That’s what I’d like to happen with Myeloma. Let’s have more answers than questions.
Getting back to your BM involvement: surely your blood paraprotein hasn’t shown such a large increase since 2003. That’s probably the most important thing.
Paul
I was just kidding! I know what you meant. Sorry if that wasn’t clear.
At any rate, I agree with you: let’s have more answers than questions.
As for my paraprotein increase, I will have to go have a look at my tests throughout the years. Soon. I will get back to you privately on that.
Margaret
Dear Margaret and Paul,
actually it’s very exciting to think that we are still in the Mgus era…
If I look at myself from outside nothing has changed. I’m fine. So why should I be classified as MM when nothing changed but the level of my IgG? I suggested this point to my haematologist, but he said that with 70% of plasmacells (BMB) the discussion is over: it’s MM. Of course science needs thresholds to classify and classification is the basis of science. BUT I believe that reality is more complex and beats classification. I like to think that we are in a sort of no man’s land much closer to Mgus than to MM and that we have to do our best to jump back to Mgus, even if science will not recognize it. If we are fine, who cares?
Have a nice week!
Anna
Hi to you all,
On the point of MM clasification, I don’t think the doctors know how to deal with those of us who take charge of our health. The classic form of MM follows a certain trend once someone has reached a certain point, but I think we are all proving that if you listen to your body, cut out all the rubbish and try to eat as well as is possible, taking the supplements that have known benifiets for our conditions, we can improve our well being and quality of life to the point that we are in a sense STABLE! if not bewilderingly for the traditional doctors REVERSING some of our illness. I myself have been clasified as MM, then MGUS, then MM and my last blood form had raised Paraprotein level ?? (my one and only BMB in 2004 showed 40% plasma cells) I think until they can finally get to those STEM CELLS, I would prefer to stay clasified as MM as at least when I go to my family doctor these days he believes me when I say I don’t feel right and could things be checked out. Where as, previously to being diagnosed in 2004, I spent a couple of years telling my doctor something was wrong and being treated like a Hypochondriac.
We need more people like you Margaret and your blog to pull everyone’s thoughts together, I believe that the answer is out there somewhere, we just need to put our heads together to find it.
Love and good health to you Margaret and all your blog readers.
Sue