EBV and myeloma stem cells. Chapter 2.

One thing Dr. Biswas discovered is that the subset of EBV-positive (as opposed to the EBV-negative) myeloma cells are the blasted stem cells, which have CD19 on their surface. What does that mean? Simply that we’re not talking about plasma cells here, but about B-cells that have the ability to REPRODUCE themselves, turning into plasma cells (which do not have that ability, btw).

Confused? Well then, let’s have a look at something different.

On page 12, Dr. Biswas discusses the 90% percentage that I mentioned in my previous post. While EBV “is benign in acute stages and latent in chronic stages […], in some cases, EBV has been demonstrated to be involved in the development of many malignancies, both hematologic and epithelial.”

So EBV doesn’t normally cause any terrible mischief. but remains inactive (quiescent) once it gets inside its host cell. But, in some cases, EBV doesn’t keep sleeping like Fluffy (Harry Potter reference: Fluffy, the three-headed sleeping dog)…That is the case with myeloma, as we have seen, but it happens in other types of cancers, too, such as Burkitt lymphoma, Hodgkin and non-Hodgkin lymphomas.

Even though it’s difficult to keep up with the technical gobbledegook, what is clear is that other factors have to be present in order for EBV to initiate the development of cancer (the image in my brain is of Fluffy waking up when the music stops…the music would be the “other factors”…). Anyway, that will be fodder for my third chapter, methinks.

So, summing up: 1. in MOST cases, EBV causes no long-term harm but simply remains dormant inside its host cell; 2. In some cases, unfortunately, it is associated with the development of cancer; 3. In myeloma, EBV DNA is present only in a small subpopulation of MM cells = the myeloma stem cells; 4. EBV doesn’t cause just one type of cancer, but quite a few, and 5. As for other types of cancer, EBV is present in EVERY SINGLE tumor cell, so myeloma really stands out in this group of EBV-associated malignancies. Yaaay, we’re special! Um.  🙄

A question just popped into my head (actually, it’s been in my head for a while now): would it make a difference if you took antiviral drugs such as acyclovir as soon as you receive an EBV diagnosis? Hmmm.

When my EBV infection was diagnosed, I was given nothing, e.g. Nothing. Just told to go home and rest…

But after going through all these new EBV-myeloma studies, I wonder if I would have ended up with MGUS (more than 18 years ago!) if I had immediately taken acyclovir or something similar? And I wonder this not just for myself but for all the people who have EBV-associated cancers.

Well, perhaps it’s because there wasn’t much research on this topic back then (the EBV-MM studies are quite recent, as we have seen). Perhaps EBV is too insidious to be targeted by any existing drug on the planet…even acyclovir has its limits, I have read. Perhaps it’s because nothing can be done once the process has begun, but I can tell you that I’d have been “relieved” (with lack of a better word) to have known the cause/s of my cancer. It would have eliminated all these years of wondering where I got this thing (well, not wondering obsessively…you know what I mean).

And another thing: with all we know about EBV now, it seems absolutely astounding that everyone diagnosed with MGUS, SMM, or MM doesn’t get immediately tested for EBV. I mean, NOW (not 20 years ago).

Or am I wrong? Was anyone here tested for EBV?

Okay, enough for today. I seem to have more questions than answers…

My next chapter is going to be a bit more technical. I’m sure you can’t wait, eh! 😉 I’ll try to tone it down…  😎 

Dieneke in the news

Well, well, I am so pleased for Dieneke! Her myeloma-curcumin story is still in the news, even after all these months (I first reported on it in August).

But what surprised me was to discover (today) that the Italian news has also picked up her story, as you can see here: goo.gl/sCKzkA

And the Times, too (in addition to many British papers, of course): goo.gl/bnefDA

Well done, Dieneke!

Mummy with myeloma

I just read a fascinating bit of news. After examining two Egyptian mummies (a man and a woman who had died, respectively, in 1800 and 2000 BC), an international team determined that they both had cancer…The woman had breast cancer…and the man had multiple myeloma.

These are the oldest known cases of breast cancer and myeloma…

So myeloma is NOT a relatively recent type of cancer…That’s incredibly interesting, don’t you think? I thought so, anyway…

Here’s the link to the Science Daily article: goo.gl/tkW8T4 

Well, well…

December test results

I had blood tests (and the Bence Jones 24-hour urine test) last week.

This afternoon I got my results. Here goes, in a nutshell:

  • My M-spike has gone down (it has actually been going down a wee bit for the past two tests, so this is the third “wee bit down”).
  • Total IgG is also down (for the second time, when compared to my last few tests).
  • My hemoglobin is in the normal range, even though my red blood cells are slightly low, but just slightly.
  • Everything else looks pretty much the same. Almost everything, certainly anything of importance, is a wee bit better compared to my most recent tests. For example, my monoclonal component hasn’t been this low since 2012. And my freelite chains have also gone down quite a bit.
  • No Bence Jones. Yaaaay!

You are probably curious to know what I’ve been taking. Not much, actually. I mean, in addition to using Nigella sativa in my food, I’ve been taking my usual 8 grams of C3 Complex curcumin a day, divided into two doses (4 grams at lunchtime, 4 at dinnertime). And, since last summer, I have been testing a Ganoderma lucidum supplement: 960 mg, twice a day (again, lunch and dinner, together with the curcumin). Well, the Ganoderma seems to have done something, for sure.

Or could it simply be the “kitten” effect (see photo of Pandora, left; Pixie, right)? Meow!!! 

Who knows? 😉

Anyway, whatever the cause, these results confirm that I’m stable…And to think that more than 12 years have passed since my SMM diagnosis…

Well, well, well! Stefano and I certainly have some celebrating to do this evening. 🙂

Ciao, everyone, and may the holiday season bring GOOD NEWS to you, too!!!

Dendritic cells, miR-29b, and multiple myeloma

Life is very complicated these days. This morning, after consulting with the vet, I discovered that our giardia-ridden kittens will have to undergo a second cycle of treatment, which will begin next week. This means that they will have to spend another month holed up in their luxurious quarantine, poor dears! I am spending almost all of my free time with them…playing with them, feeding them, holding them, cleaning  up, sterilizing, and being SUPER CAREFUL whenever I handle anything at all in the quarantine room.

Mind you, it may sound like it, but I’m not complaining. Not at all!!! I mean, just look at that face!  🙂 

Well, okay, I admit, I HAVE had a few frustrating moments in which I’ve asked myself, and/or Stefano, HOW and WHY did we get into this mess??? Agh!

But the truth is that we almost certainly saved the lives of our kittens, and probably the lives of their siblings, too (immediately after we received the giardia diagnosis, I got in touch with the woman who gave us the kittens…She had no idea…). So that is something to remember…

And besides, these two kitties are so incredibly adorable and funny and affectionate…They act like normal, playful, curious, crazy kittens that zoom all over the place and then crash and sleep until they have enough strength to go back into the crazy kitten mode…I mean, you can’t tell that there’s anything wrong with them…except for the huge quantity of smelly pooparoni (though it’s MUCH better than it was a couple of weeks ago, let me tell ya)! Yuck!

Okay, enough…It will only be another month, then they’ll be cured, and we’ll be able to let them out into the rest of the house…and meet their older siblings (yikes…a bit nervous about that). If we’re lucky, they’ll be well enough by Xmas. That would be a lovely present indeed!

But that’s not the reason I’m writing this post, even though, hehe!!!, it might seem that way. Nope, this evening I wanted to write (then I got derailed, sorry!) about a new myeloma study that I bumped into just this morning…a very interesting, and mostly Italian!, study on myeloma and dendritic cells (DCs, for short), which is fully available online and has been accepted for publication in “Leukemia.” Here’s the link: goo.gl/wFMjS1 I’ve written a few posts on dendritic cells and myeloma, btw, so you can use my “Search Box” to have a look through my blog, if you want.

The abstract begins with a good explanation of DCs: “Dendritic cells (DCs) play a key role in regulating tumor immunity, tumor cell growth and drug resistance.” The authors believe that MM cells may recruit and reprogram DCs in order to survive. They found a member of the microRNA family (a family of teeny tiny RNA molecules that regulate gene expression), called  miR-29b, which is is not downregulated in normal DCs but, drum roll!, is downregulated in most types of cancer, including myeloma.

Now, even though we may not understand (or care!) what exactly this little, hairpin-shaped miR-29b does, etc., the main thing is that it  is able to counteract “pro-inflammatory pathways, including STAT3 and NF-kB, and cytokine/chemokine signaling networks which correlated with patients’ adverse prognosis and development of bone disease.”

Translation: more miR-29b, less myeloma cell proliferation.

So, miR-29b is GOOD. From our perspective, of course, not from that of a myeloma cell. 😉

Now, it’s getting late over here in Italy, and I don’t have much time left. Stefano is on his way home (oh, oops, he just walked in the door…I have to go help him with dinner…He’s the chef tonight…). So I have to leave you with this study and all its complexities.

But do have e a look at page 23. There you will find that ASPIRIN and CURCUMIN “revealed a promising therapeutic activity in both MGUS and sMM patients.”

AHA!, so researchers ARE paying attention. This one sentence made my day…my week, even! 🙂

Oh, and guess what? Curcumin upregulates the expression of miR-29b. Tadaaaaaa!

I will have to keep my eye on these authors who are also looking into the role of this little molecule in the progression from MGUS to MM.

Good stuff, good stuff!!! Take care, everyone!!! Ciao!

Update on the viral connection to myeloma

A blog reader (thank you!) sent me the link to a French study that was recently published in JCI. It discusses the link between IgG myeloma and pathogens such as, ta da!, the Epstein-Barr virus, or EBV for short, the virus to which I was exposed while doing my doctorate at the University of Toronto and which I have always believed to be the underlying cause of my own, er, situation…

Before I forget, in all the excitement!, here’s the link to the (full) study: goo.gl/g73Sx8 And there, right at the end of the abstract, we learn that “a dysregulated immune response to infection may underlie disease onset and/or progression of MGUS and MM for subsets of patients.”

Bingo!

This isn’t the only study I’ve read or glanced at in the past week on pretty much the same topic, which, um, to be honest, I haven’t looked at in years now. So yes, there are others. But first, let’s have a look at this one.

The abstract tells us of the association between B-cell malignancies and EBV (also, HCV and H.pylori): “Subsets of mature B cell neoplasms are linked to infection with intracellular pathogens such as Epstein-Barr virus (EBV), hepatitis C virus (HCV), or Helicobacter pylori.” First point.

And here is another piece of the puzzle (see Introduction): “…viral and bacterial infection in patients can lead to the production of oligoclonal or mc Ig.” (Note: mc Ig = monoclonal immunoglobulins or antibodies.) Our clonal plasma cells produce a lot of these antibodies that thus far had been thought “not to have functional activity.

But wait!, that may not be the case. Perhaps these antibodies do have a purpose after all. In previous studies, the French researchers in fact found that in Hepatitis C-positive patients these antibodies “almost always target the virus…” Aha. And that is an important third point. I don’t remember ever reading anything about MM cells doing anything remotely useful, so this was a big, no, it was a HUGE discovery for me.

Let’s keep going.

Their conclusion is that “an abnormal plasma cell response to infection could be the initiating event of some MGUS, SM, or MM cases.”

I can’t tell you how this made me feel, after years of having myeloma experts tell me that there could NOT possibly be any link whatsoever between my myeloma and my EBV infection. Vindication? Yeah, I guess.

The article at one point refers to a study discussing the case of a patient with a  chronic HCV infection whose stage IIA MM regressed to MGUS.

Regressed to whaaat??????

Now that really caught my attention!!!!!!!! And so I rushed to read the case study, which is fully available online and is an Italian study, to boot: goo.gl/yeDwZvZ

This patient’s MM regressed to MGUS after just six months on an anti-HCV treatment. Six monthsssssss, that’s it???

I had to stop reading for a minute to let this all sink in.

How did I miss that 2013 Italian study???

Well, true, I can’t keep track of everything…I do have a life, after all!!! Besides, the important thing is that I finally did read it. Anyway.

So here’s the thing: IF transforming her MM back into MGUS was possible for an HCV patient, why couldn’t, theoretically, the same be possible for an EBV patient with SMM or MM? And even if a regression didn’t occur, what’s there to lose?

Get rid of the virus, get rid of the myeloma. Sounds simple. Too simple, probably. But…worth a try. (Important note: I don’t know how toxic the antiviral treatments are. More research AND my doctor’s advice needed, here, before doing anything too hasty…)

Now, as the authors suggest in the Discussion part, perhaps this could be feasible in the early stages of the “chronic underlying infection”…But they also add that it might even be effective in later stages of MM. Boy, that would really be something, wouldn’t it?

Here are some excerpts from the Discussion (my highlights): “Overall, our findings imply that chronic stimulation by infectious Ag may promote MGUS and MM in certain patient subsets. Importantly, some of the identified infectious pathogens (HSV, HCV, H. pylori) can be effectively treated. This observation has obvious clinical consequences, since the detection of MGUS or SM patients with an mc IgG specific for a treatable pathogen would allow the proposal of antiviral or antibiotic treatment for patients. If an underlying chronic infection were cleared early enough in disease progression, it could perhaps offer the tantalizing possibility to prevent MGUS transition towards SM and overt MM for the first time. In such cases, addition of antiviral or antibiotic treatment to current protocols might indeed induce disease regression and/or improve response to standard treatments, as reported for interferon-? treatment in HCV-associated MM.”

Hmmm, they say that “some of the identified infectious pathogens […] can be effectively treated,” but they don’t list EBV. Have to check on that one…

Okay, I’m stopping here for today. This is just the first part of a series of posts that I intend to write on this topic. I’ll re-read and, if I find something else of interest, finish writing about the JCI article in my next post…in any case, I have also downloaded a couple of other studies that might be of interest. Need more time, though…

Must rush off now. Ciaooooo!

Oh wait, let me leave you with some food for thought, hehe: curcumin inhibits EBV.

Bam!

The Daily Mail article on Dieneke, curcumin, myeloma…

I should have posted this link (see below) days ago, but ever since we lost our eldest cat, Puzzola, practically all my free time has been devoted to taking care of, and doing research for, Piccolo (the big black and white cat in my header photo), who, at age 14, has unfortunately been diagnosed with spondyloarthrosis, a very painful, degenerative condition of the spine…

But this will be fodder for another post, since I have a question for those of you who have pets…

Today my focus is instead on Dieneke, my longtime blog reader whose oncologists recently published her case study (see my May 30 2017 post). As a result of that, she was interviewed by a reporter from the Daily Mail (UK), and the article was published on July 24.

I was and am extremely pleased about this for two reasons:

  1. curcumin has really worked for Dieneke…and it always makes me so happy to think about all the blog readers who have benefited from taking this extract (or other things, too, for that matter…think of blog reader TAB, for example…).
  2. her recent “stardom” has enabled her to to reach out and help others…And that is wonderful!

Here is the link to the Daily Mail article (with photos), which, by the way, has been picked up by a slew of other news sources online and has thus gone VIRAL, how about that, eh…: goo.gl/wMzJ7e. Fantastic.

I hope you all enjoy reading it as much as I did.

And again, THANK YOU, Dieneke: you are an inspiration to so many, including yours truly! 🙂

My blog…mentioned in a BBC radio programme!

Even though my blog reader D. had told me some time ago that my blog might be mentioned in the BBC radio station that had interviewed her for the programme they were doing on turmeric, I was happy about that, of course, but I hadn’t really gotten too carried away…until today, when I found and actually listened to the programme, which is available online, right here: goo.gl/Gmda8N

BBC food programmeDieneke’s case study is mentioned toward the end of the programme, so please be patient. It’s a very interesting programme, anyway. With a nice turmeric-based recipe or two, which never hurts!

I have to admit that I got a bit teary as I listened to Dieneke (no point in trying to protect her privacy anymore, since her name is mentioned during the programme!) and her oncologist discuss her case…Teary in a good way, of course!

And at this point I would like to thank blog reader Jan who posted a lovely comment on my April 20th post…the comment that inspired me to have a look for the programme in the first place (but I didn’t think I’d find it):

“On Sunday 28th May 2017 ( repeated on Monday 29th) I listened to a programme on BBC radio 4 FM called ‘The Food Programme ‘. It was talking about health benefits of turmeric and in particular curcumin. The contributor to Margaret’s blog called ‘D’ was interviewed about her use of curcumin and how her MM has stabilised now for five years. Her oncologist was also interviewed and the study was mentioned. It all sounded very positive about curcumin. ‘D’ also said that she had discovered curcumin on Margaret’s blog. The programme presenter called Sheila Dillon also has MM and as I recall had a SCT a few years ago.
I’ve had MM for seven years and have been following Margaret’s blog since then. Have tried numerous alternative treatments but due to extreme pain had five months of Velcade etc last year. Pain now coming back so thinking of doing curcumin. Hadn’t done it before for various reasons.
Margaret this is so exciting! Your curcumin protocol and your blog has been talked about on the BBC!
Thanks so much for all your great work. You’ve kept me going over these seven years.

And ‘ D ‘ thanks to you too for your major contribution .

Best wishes to all,

Jan.”

And finally, thank you, Sheila Dillon and BBC Radio 4, for this very interesting programme! 🙂

“Long-term follow-up of curcumin treated MGUS/SMM patients – an updated single centre experience”

In an email I received yesterday, Dr. Terry Golombick notified me that her team’s most recent article has been  published in the Journal of Hematology and Medical Oncology. It is available for free online…just click here: goo.gl/cEP93h

keep calm and turmeric onAhhhh. Wonderful…absolutely wonderful.

Wonderful, because finally…FINALLY (!!!)…we have a long-term look at a GROUP of MGUS and SMM patients taking curcumin. These are those who participated in the Australian MGUS/SMM study and who “continued to take curcumin over a number of years, of their own volition, even though the studies in which they were participating are complete.”

So this is a “long-term follow-up of 13 MGUS/SMM patients who have been taking curcumin (at a dose of 4 -8 grams daily) for a period of 3-9 years.”

Only one patient, who had cardiac amyloidosis (!), went on to full-blown myeloma and is currently undergoing conventional treatments. The rest of the patients are doing quite well, some better than others…anyway, you can read all the details in the report…

I really hope that this report will encourage more and more centers to start giving curcumin to their MGUS and SMM patients and, why not?, to their MM patients as well. At this point, I could go into a tirade about the short-sightedness of conventional medicine, but, at least for now, I’d rather look at the positive side, which is the publication of some CASE STUDIES, like the one concerning my blog reader D., and this Australian one.

I would like to end this post by stating that we all owe a large debt of gratitude to dedicated researchers like Dr. Golombick who have overcome all sorts of obstacles (I’m sure of that!!!) to help patients like us have the best quality of life possible, for as long as possible…

To all the Golombicks of the world: thank you, thank YOU, THANK YOU!!!  🙂 keep calm and watch and wait

By the way, let me remind you that Dr. Golombick and her team have set up a useful website for all of us who have a type of blood cancer. I’ve talked about it here on the blog, but just in case you missed that post, here is the link: https://www.watchandwaitbloodcancers.com/

KEEP CALM AND…

WATCH AND WAIT!!!!!!