Update on the viral connection to myeloma

October 18, 2017 / Margaret / 3 Comments

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!

Kittens kittens kittens!

October 15, 2017 / Margaret / 3 Comments

The biggest personal news of this period is that Stefano and I have decided to adopt two female kittens. Yep, we’re a couple of crazy cat people, no question…

Right now they’re five weeks old, so they’re still with their mother, a sweet, lovely multi-colored European cat that belongs to a family here in Tuscany. They will stay with her until they are fully weaned and ready…I’d say, about mid November.

Why TWO kittens, not just ONE, you might ask, since we already have FIVE other cats? Well, there is more than one simple answer to that question…

It might seem, at first glance, that we want to replace the two cats that we lost this past summer. That is NOT AT ALL the case. There is not a cat in the world that can replace Puzzola and Piccolo in our hearts. They were the first two cats we adopted after Stefano and I got married and moved into this house, many many years ago.

That doesn’t mean, of course, that we won’t love them as much as we loved Piccolo and Puzzola or any of the others. Each cat is different, and we love them all for different reasons. I’m not explaining this too well, but I hope it’s clear at least that we never intended to replace our two eldest cats here…

The main reason for adopting two kitties is that our adult cats have very different backgrounds…some good, some not so good (i.e., abuse, illness, etc.). And a couple of them are very jealous of us…one (Pinga) in particular. So we figured it would be better to bring two kittens, not just one, into this crazy feline house, so that the attention of our adult cats won’t always be focused on one kitten. Whatever might happen behind our backs, especially in the first period (once we’ve made the proper introductions…we’re experts at that by now!), the two kittens will always have each other for backup. I don’t know if that makes any sense to you, but to me it totally does…

Of course, our main reason for adopting again is that Stefano and I want to bring some joy back into our home. It’s time to replace our pain, the pain of our recent losses, with some happiness…

I don’t have any photos of our new kittens yet. When we went to see them for the first time last weekend, when they were just a month old and fit into my hand, we took some cell phone photos that didn’t come out too well…Next weekend I will take my camera and get some proper shots…

Now for the names. We’re keeping the tradition of giving names that begin with the letter “P”, and we already have a few contenders, but we’re still accepting suggestions. So, please, give me some good female “P” names! 🙂

And finally…this is not going to turn into a cat blog (although I have been thinking of creating a cat blog just for fun…might do that someday)…But I will not stop sharing some moments of my personal life here in Florence.

That said, I am working on what I think might possibly be an important series of posts that go back to a topic I was rather obsessed with here on the blog some time ago. Curious? Well, I’m almost done with the first post…So…stay tuned! Ciao! 🙂

Piccolo (2003-2017)

September 8, 2017 / Margaret / 18 Comments

This morning we had to say goodbye to our Piccolo. And now he’s gone, too, so soon after Puzzola…

I’m still in shock. So is Stefano. We still can’t believe this happened…I mean, yesterday morning he was still walking around, bumping into things, BUT walking…and today he’s gone.

He stopped eating day before yesterday and, well, it just went downhill from there.

After trying everything I could think of, I finally took him to the vet yesterday afternoon, and she said we had two choices–try to do something OR put him to sleep right there and then.

I opted for the former, because I still had some hope that he could recover. He underwent some treatments (nothing too harsh, except for the force-feeding, which was as gentle as possible), and then I took him home.

Last night I slept with Piccolo on my chest and stomach. He was still a big cat, even though he’d lost some weight lately: 13 pounds (6 kilos). I wanted him to feel my warmth, since his body temperature was low, as I found out yesterday. He didn’t move but fell asleep immediately.

I woke up around 1:30 AM because he was getting a bit agitated and moving around on me.

I was afraid he might fall off the bed, so I took him into the bathroom where we’d put his fuzzy bed yesterday afternoon. I covered him and, after making sure he was okay, went back to bed. This morning he was in the same position I’d put him. He didn’t move or wake up.

We both said, “it’s time to let him go.”

To make a long story short, we called the vet hospital (they already knew, actually, since I’d called them last night when he was scrambling around, trying to walk but not being able to, very agitated…We almost took him in last night, but our vets weren’t on duty, and I didn’t want a stranger to do it…).

After checking him out, the vet told us we’d made the right decision.

It’s likely that he’d had another stroke yesterday at some point…

He would never have recovered.

And so he’s gone…our sweet, loving boy, the one who brought balls to us while we were in bed, our retriever cat who stopped retrieving as he got older but would bring us balls anyway, for us to throw down the stairs. Then, when we’d refuse to get up and go get the balls ourselves and bring them to him, he’d look at us so reproachfully…

My boy, who slept on me (as you can see in the last photo…he was gazing into my eyes…). Whenever I was ill, he was always on the bed, nursing me back to health.

He also Skyped with my parents. Of all our cats, he was the only one to do that. He really looked at them and followed their movements. Such a smart kitty.

My big purrbox, who’d stopped purring in August. Oh how I missed his purr…I’d give anything to hear it again. Before August, all I needed to do was look at him, and he’d start purring.

My heart is broken. Stefano’s heart is broken.

We are simply devastated.

Two beloved cats in two months.

It’s too much.

It’s simply too much.

P.S. If you hover your mouse over these photos, it will give you some info and dates.

“Use of Alternative Medicine for Cancer and Its Impact on Survival”

August 30, 2017 / Margaret / 4 Comments

A blog reader, thank you!, told me about a study (same title as my post) that was recently published in the Journal of the National Cancer Institute and that has been picked up by a whole slew of online news sources and blogs, some with ominous titles such as “Alternative medicine kills cancer patients” or “Alternative medicine can kill you.”

So what’s all the fuss about? Should we be concerned?

Here’s the gist: a team of four Yale researchers carried out an observational case control study, comparing 280 cancer patients who had chosen to use ONLY alternative therapies to 560 patients who had instead received conventional cancer treatments. They noted how many patients lived for at least five years and found that those in the AM group had a greater risk (about 50%) of dying compared to those in the CCT group.

The researchers therefore concluded that using alternative instead of conventional medicine to treat “nonmetastatic,” “curable” cancers, including breast, prostate, and colorectal cancer, increases a patient’s likelihood of dying.

Here’s the link to the abstract: http://goo.gl/Gtx5Gp

Someday, I’d like to read the full study, but for this post, I relied on online news sources, reliable ones, which I normally would prefer not to do…but I don’t have much time right now, and I have lots to say, so here is one of the sources I used, a Yale source: http://goo.gl/GXc5jx

As you may have gathered, I have a few (big) issues with this study. Here goes:

First and foremost, I have a question for my blog-reading statistics experts: shouldn’t the two groups have been the same in size? I mean, the researchers compared a group of 280 patients to one that was twice its size = 560 patients. Doesn’t size matter sometimes??? [Okay, I just read online that a sample size imbalance doesn’t mean that the study isn’t accurate, from a statistical point of view, even though comparing groups of equal size is preferable. But the statistics article I read online was referring to minor differences in size, not huge ones, as in this study, so I’m keeping my question on size…]

Secondly, and more importantly, the researchers did NOT include any DATA concerning the TYPE of alternative treatments chosen by the group of AM patients. We don’t know if these folks were using homeopathic remedies or herbal extracts, if they were juicing all their food, or if they were carrying so-called healing stones around in their pockets. It doesn’t take an Einstein to realize that this sort of data is absolutely CRUCIAL to a study like this one…

Why? Because alternative treatments are not all the same. There is an enormous difference between waving crystals in the air (or whatever you do with crystals…I have to admit I have no idea) AND taking a scientifically-backed extract that has been tested in clinical trials.

Not to mention all the revolting quacks and charlatans who make millions by exploiting the understandable fears that we, cancer patients, have of suffering and dying. What if all of these patients had been following the advice of quacks and charlatans?

I was annoyed by the fact that these researchers were able to find out that the AM folks tend to be wealthier and better educated than the CCT folks, but didn’t make the extra effort to provide any data on the types of alternative treatments used by the former.

And so they chose to lump “alternative medicine” into one big category. Well, why the heck not? It makes things so much easier, doesn’t it? And besides, who would question a study like this one, whose results, based on a small sample (when you think about it), have provided all these juicy, scary headlines? Not very many people, methinks. Indeed, I haven’t yet found ONE SINGLE criticism online…Not one.

Sheeeeeesh!!!!!!!!!!

Okay, let’s move on to a rather interesting note: the researchers identified the types of cancer considered in their study as “curable.” I stopped short when I read that. Curable? I thought only testicular cancer was actually curable.

Well, again, if you read the statistics, as I did this morning, you will find that many types of cancer are considered to be “cured” if they don’t come back for a certain number of years (five years, I think) after conventional cancer treatments. And so the cancers in this study are considered “curable” IF caught and treated early on.

But what happens after the five year benchmark? Hmmm…

And another consideration: how are the folks in the AM group doing compared to those in the CCT group?

What’s their QUALITY OF LIFE (QOL), for starters?

Speaking of which…a personal note: my father-in-law, who was diagnosed with invasive melanoma in 2010, was considered to be a total success story by his oncologist, even though the conventional treatments he’d undergone had left him with terrible side effects that condemned him to a prolonged and agonizing death. But for conventional medicine, my father in law was “cured.”

Anyway, I don’t want to get into that. It’s not the point of this post. It’s just that this “cure” business drives me absolutely bonkers, sometimes, since it doesn’t take into account so many important aspects, such as QOL, as I mentioned above. I don’t know about you, but QOL is verrrrrrrrrrrrrrrrrrrrrrrrrrrry important to me…

I’d like to end this post, which has gotten me rambling a bit all over the place (sorry about that!!!), with a few more, perhaps obvious!, comments.

These data-based studies are supremely annoying…and meaningless…useless, really, since a lot of what I consider to be important information (QOL, etc.) on the patients is missing. Totally missing.

Just my opinion, as usual!!!

P.S. By the way, I could mention the fact that two of the four researchers had received grants from companies providing conventional cancer treatments, and one researcher had a grant from a large cancer treatment center. But I won’t. (Oh, gee, I guess I just did! 😉 )

Blindness and laser therapy

August 12, 2017 / Margaret / 2 Comments

We spent almost the entire day Thursday at the vet clinic with Piccolo, our (now) eldest cat. He was recently (last month) diagnosed with spondyloarthrosis, a joint disease of the vertebral column. It’s a very painful, degenerative condition…

Thanks to my research online, however, for the past two weeks he has been having laser therapy at the vet clinic, three times a week. These sessions have proven to be extremely beneficial: he’s no longer in pain, which means he’s able to walk around the house, stairs included.

I’ve also been giving him a daily dose of cortisone and, until a couple of days ago (when all hell broke loose, as you will read below), a bit of curcumin, the same C3 Complex that I take, mixed in with his food. I will resume the curcumin this evening, now that things have settled down a bit…

Okay, so here’s what happened: about a week ago, perhaps a bit longer (it seems like a century ago to me!), I noticed that he didn’t seem to be able to focus on anything. He wouldn’t look into my eyes, for example, not even when I was at eye level. In short, he didn’t seem all there. In the beginning, I thought it might be because of the pain from his spondylosis…but when this “space cadet” condition persisted, I asked the vets to check his eyesight.

A few days ago the vet ophthalmologist confirmed my suspicions, unfortunately: Piccolo is completely blind in one eye, his right one, and almost completely blind in his left eye; he sees just enough to avoid obstacles.

But that isn’t it. The following occurred just a few nights ago, Wednesday night to be precise: Piccolo began walking in circles. Stefano and I knew something was terribly wrong, so we took him to the vet clinic first thing in the morning. Our vet did a few tests and confirmed that it must have been caused by some sort of neurological problem and set up a CAT scan for the following afternoon.

The good news is that the scan was negative for brain tumors or anything life-threatening. In fact, the vets found very little that would explain Piccolo’s sudden (and almost complete) blindness. They suspect it was caused by something like a TIA or mild stroke that might heal a bit in time, and that is definitely good news, of course. Since there is really nothing wrong with his eyes, nothing that would explain the blindness, according to the ophthalmologist, it is in fact possible that some day he might be able to regain a bit of his sight. Or not.

His blood tests have also improved since July. Definitely good news, there.

An aside: we spent so much time in the vet clinic on Thursday (eye tests and blood tests in the morning, and then the CAT scan and his laser therapy in the afternoon/evening) that we came to know some of the furry or feathery patients…and their humans, too, of course.

And some of the stories we heard on Thursday made me realize that, in spite of these difficult furry times, we have been very, indeed VERY lucky. Unlike other folks, in fact, we’ve never really had to deal with any major health problems with our cats until recently. Well, come to think of it, there have been a couple of things in the past (mainly with Piccolo, as it were), but we managed to get past them without too much heartbreak.

Anyway, case in point: on Thursday afternoon, at one point, a distraught young man came out of one of the examining rooms holding his adorable 11-month-old kitty. I heard him utter the words “chemo…useless…transfusions haven’t worked…” After he’d left, we learned that this poor little kitty had a fulminating type of cancer (blood cancer, I daresay) with a dire prognosis. The kitty had already had three blood transfusions…I forget now if she’d had some chemo, too, but at any rate, nothing had worked. But since she was still so young and alert, and in fact she looked just fine to me, poor dear, her human had made the decision not to have her euthanized. He took her home…to die. I asked the clinic’s secretary if the kitty would suffer. She said, no, that wouldn’t happen.

So sad…

Unlike this young man, at least we’ve had many happy years with our beloved cats. No cancer, no horrible deaths at a young age, blablabla. And, as I said, Piccolo, who is now more than 14 years old, will probably get a bit better, in time, with curcumin, cortisone, and a specific brain neuron-healing product that contains, among other things, fish oil and resveratrol…eh.

I’d like to end my post with a positive note. Early this morning I woke up and found all the cats on alert because of a thunderstorm. Piccolo was restless and wandering around, too. Well, to my surprise, he walked up to me, resting his head against my leg, for the first time in days and then followed me around as I checked the windows to make sure it wasn’t raining in. I reached down to pet him and then spent several minutes rubbing and scratching him…He didn’t purr (he hasn’t purred for days, unfortunately), but he seemed content enough. And that is when I began feeling that we’d turned a corner. Finally.

He also slept a lot today, for the first time since we brought him home on Thursday evening.

One last, obvious thing: the world is full of blind cats, and Piccolo is not even completely blind. So I’m sure he will figure it out, and we will do our best to help him.

Everything is going to be fine…