My NON post

March 13, 2018 / Margaret / 6 Comments

When I first began blogging, in March of 2007, a more experienced blogger informed me that I had to publish a post every day in order for my blog to be visible on Google and not be deemed “inactive.” If I stopped writing and publishing, even for ONE day, he added, my blog be more difficult to find on the search engines, meaning that I’d lose my readership. He talked about blogging as though it were a competition.

Well, I didn’t care about competing with other bloggers and/or becoming THE most popular myeloma blogger (!), but I did want to reach and possibly help as many people as possible, so I tried very hard to write and publish a post every day. Not easy, when you have “distractions,” such as a loving hubby, a job, a bunch of cats needing attention and care…and so on and so forth….

At a certain point, though, I decided, ENOUGH. I wanted to enjoy my life outside the blog. I’d done enough research to last almost an entire lifetime and, to be honest, I was sick and tired of reading scientific jargon every single day…

Plus, sometimes I didn’t know what to write about/had writer’s block. Writing became a bit of a struggle, even though I have to acknowledge that it’s only thanks to my blog that I have discovered how much I love writing…

Anyway, back then, in short, I needed a break.

And so I took a break from blogging. Just as I’d been warned, my readership dropped. Day by day, practically. It’s now down to less than a third of what it was in the “golden years.” But I didn’t care. I was outside, breathing fresh air, enjoying life, with plenty of time to spend with my friends…and so on and so forth. 😉

Mind you, I still had, and have!, a lot of readers writing to me with their questions and findings. In fact, many of them have become friends in real life, which is just wonderful. I also still had and have a lot of mail to sort through on a daily basis…often so much (mail) that I cannot reply to everyone, and for that I apologize.

Recently, though, I’ve been coming across some really interesting and/or promising stuff, which I’ve found on my own or thanks to blog readers (you know who you are, THANK YOU), such as:

the bone marrow microenvironment studies
the EBV-MM connection
Dieneke’s case study getting published in the UK (yaaaay)
andrographolide
the Chinese MM patient’s case study
astragalus

There seems to be a lot going on, which is very exciting. Inspiring, in fact. And for a while I almost got back to a post/day… 😉

But ever since Stefano came down with shingles (he’s better now, btw, but still in quite a lot of pain…hasn’t gone back to work yet), I haven’t felt much like writing. It’s so hard to see the person you love in such pain. His pain has had an effect on me, too.

I haven’t stopped doing research…But these days it’s been mostly on the natural ways to relieve the pain caused by shingles, and in fact the turmeric-based topical applications have really helped him. However, only prescription-strength Tylenol (the Italian equivalent) is able to reach the sort of INTERNAL nerve pain he has been experiencing…My poor sweetie!

BUT, of course, this negative period will soon be over. Stefano is already feeling better, and the awful rash is fading. That means that I’ll soon be back to blogging more. I’m already looking at a couple of studies on my desktop, hoping they’ll inspire me to write a post…

Okay, it’s time now to go check on my patient. Take care, everyone! CIAO! 🙂

Fuoco di Sant’Antonio, shingles, herpes zoster…

March 7, 2018 / Margaret / Leave a comment

Stefano had been complaining recently (last week) about a strange sort of pain/ache in his back that began more or less last Wednesday. We thought he’d pulled a muscle or some such thing. But the pain wasn’t going away. When he’d come home from work, and in the morning when he got out of bed, it was ouch-ouch-ouch. I suggested he at least call our GP, but he didn’t want to bother him. He really thought it was a pulled muscle. Then, on Saturday morning, he asked me to take a look. I found a little rash on the left side of his torso, but he said it wasn’t where the pain was.

And so I didn’t make the connection. Nor did he. Not until the rash had spread a bit, which it had by Saturday night. At that point, we both knew what it was, since his father and both of my parents had had it.

Shingles.

UGH!!!

In Italy it’s called Fuoco di Sant’Antonio in Italian, or fire of Saint Anthony.

Unfortunately, we had no way of getting in touch with our GP during the weekend, and my rather stubborn Stefano didn’t want to go to the ER. So he “lost” a day, since, without a prescription, I wasn’t able to get the antiviral drug (acyclovir) for him until Monday morning, after we’d contacted our fantastic GP. And by Monday morning, let me tell ya, the rash had spread all around his torso, in back and in front, and he was in a lot of discomfort.

Well, I didn’t wait until Monday to take action. On Sunday morning I made a paste with organic turmeric and a bit of water, which Stefano spread over the rash. Incredibly, the rash stopped burning and itching. It did NOT stop the rash from spreading, BUT the area covered by the turmeric paste didn’t burn or itch at all, whereas any new bumps that developed during the night itched and burned like crazy. Once he’d covered those bumps with the turmeric paste, though, the burning and itching disappeared completely.

This is how we knew it really worked.

And that’s why I’m writing this post today, with Stefano’s permission…because it’s a bit of good information that can be given to anyone who has shingles. As I noted, the turmeric + water paste will NOT stop the internal nerve pain caused by shingles (you need antiviral meds for that…), but it might stop the superficial burning and itching. I use the conditional tense “might,” because of course we all react differently, even to the same drug or treatment. But his case is a rather nasty one, and his skin should be itching and burning like mad. It’s not. Not at all.

The first few days (from Saturday night to yesterday morning) have been the most difficult. Last night he managed to sleep without any trouble. So I think the acute phase is over…And we can relax a bit…

Anyway, I’ve found another use for turmeric! Of course, it’s nothing new to Ayurveda…but it was to me! 🙂

Snow in Florence…

March 2, 2018 / Margaret / Leave a comment

So very exciting! Yesterday we woke up to a thin blanket of snow covering our street, and it was still snowing. As for accumulation, official estimates have been between 2 and 5 centimeters (5 cm is about 2 inches). We live on the outskirts of town, and we definitely got 5 cm, perhaps a bit more.

Yes, a very small snowfall, but it was enough for all the schools in Florence to be closed. No, I’m not kidding. Based on the forecast, on Wednesday the municipality announced that there would be no school on Thursday. Why? Well, simply put, because Florence doesn’t do well in snow, not even a few inches.

We’re simply not equipped for it.

Our last snowstorm occurred in December of 2010…although, unlike yesterday’s snowfall, that was a BIG one (well, for Florence, anyway). In 2010, we got more than 10 inches of snow (I wrote a post about it, in fact, and posted a few photos of our snow-covered neighborhood…).

The city was completely paralyzed back then…I remember barely making it home from work, and Stefano got home only after 1 AM, after nearly getting stranded near his office…It was a mess for most people, but for ME, it was COMPLETE JOY!!!

Anyway, I know that those of you who live in places that get much bigger snowfalls will laugh at us (and, having lived in Boston, Toronto, Cape Cod, in a way I do, too), but that’s the way things are here. After all, it would be pointless and expensive to have a lot of snowplows rusting away inside warehouses, waiting for that one possibly-big snowfall we get every seven years or so…Right?

Back to yesterday. After taking a few photos of our street and our garden, I really wanted to go up to Florence’s panoramic terrace overlooking the city, the Piazzale Michelangelo, to take some photos of the city…but it’s far from our house, too far to walk (based on the forecast, the snow was going to turn to rain at lunchtime…not enough time…).

Stefano had to go to work (his SUV has winter tires, unlike my little Panda), so I begged him to take me up to the Piazzale. I reasoned with him that snow is such a rare event in Florence and that we just had to go to the Piazzale. He replied, “no, sorry, I really wish we could, but there just isn’t enough time. I have two shipments going out today and have to be at work ASAP.”

I understood, of course. But still, I was so disappointed! Oh well. I began getting myself and my camera ready for some neighborhood shots. Not the same thing, of course, but it would have to do…

But then I saw that sneaky boy getting out his camera gear, his new lens in particular…

Haha, very funny indeed, Stefano!!! Yes, I married a comedian… 🙂

And so we reached a compromise: we’d stop at the Piazzale to take some photos on the way to his office, but then I’d be stuck at his office all day. Clearly, I was more than happy to be “stuck.”

So here are some of my photos. Sorry, they look fuzzy and dark because the snow was still coming down, and the light was terrible (for photos, anyway). I took some others with my cellphone, but for some reason they aren’t downloading onto the computer. These will have to do.

In the end, we had tons of fun yesterday. One of Stefano’s colleagues had brought her daughter to work, so she and I went outside while the grownups were working 😉 …We chased each other around the snow-filled parking lot and had a fierce snowball fight. What a blast!!!

I know I’m in the minority, but I LOVE SNOW (in case that weren’t obvious…hehe). I know, I know, I would probably change my mind if I lived in a Northern European country and had to shovel a ton of snow every day every single winter, but since I do not, snow always gives me a sense of peace and beauty…the sort of feeling you get when you meditate. Although…that feeling is totally gone today…It’s been raining hard all morning, so the snow has all melted…oh well…

It was lovely while it lasted!!!

Two gadolinium-based contrast agents are banned in Italy

February 28, 2018 / Margaret / 2 Comments

Wellwellwellwellwell! WELL!

I just read a bit of welcome (or, wellcome!) news in Italian. If you understand Italian, here’s the link: goo.gl/JYN8ec. In a nutshell, beginning today, yes, TODAY!, two contrast agents used in MRIs have been banned in ITALY. And, quelle surprise (not), they are gadolinium-based.

Remember the study that came out some years ago about how much myeloma cells simply LOVED gadolinium, and proliferated at mad rates when placed in it? If not, just do a search of my blog for “gadolinium.” Gadolinium can also have a bunch of not-very-nice side effects…

The reason for this ban isn’t, however, because of that important gadolinium-myeloma study. No, what’s happening today in Italy is mostly a precautionary measure, based on the July 2017 recommendations of the EMA, the European Medicines Agency, which in turn are based (!) on the findings of its Pharmacovigilance Risk Assessment Committee, which is Europe’s equivalent to the U.S. FDA. Basically, small quantities of gadolinium have been shown to accumulate in the brain, and there is no way of proving that those quantities do not cause any damage in the long term.

Hence the ban.

Does that mean that gadolinium has been completely banned? Unfortunately not.

In some cases–when there is no other way to reach a diagnosis, e.g.–the smallest dose possible will be used. But there will be no more widespread use of this crap. Oh sorry, did I say “crap”? Oh dear, so I did. 😉

Another thing: the gadolinium-based contrast agents gadoxetic acid and gadobenic acid will continue to be used in liver scans.

But that is IT. Gadolinium is on its way out (at least, that’s what I hope!).

We need to focus on finding non-toxic or at least not-so-toxic contrast agents. There must be another way to do this…there must be…

Ah, speaking of which, I just read about potentially safer manganese-based contrast agents in an article titled “U.S. patients left fending for themselves with gadolinium safety risks”: goo.gl/zCz5gM

And this is where I am going to stop today, with the hope that a non-toxic contrast agent can be found…

P.S. I’ve been having difficulty accessing the Internet in the past few days…It’s on, then off, then on again…a real drag. I want to publish this post before I lose Internet again, so I’m not going to reread it, as I usually do…pazienza!

Off I go…Need to feed the cats and have lunch! Ciao! 🙂

“The therapeutic effect of modified Huangqi Guizhi Wuwu Tang for multiple myeloma.” A case report.

February 23, 2018 / Margaret / 10 Comments

This morning I came across an interesting case report of a Chinese female patient who was diagnosed at the age of 49, in July of 2000, with IgG kappa multiple myeloma. After going through nine chemo cycles (mainly melphalan), she discontinued the treatments because of serious side effects. The full study is available for free here: goo.gl/evtUrQ

Less than a year post diagnosis, in May of 2001, she began taking a traditional Chinese medicine (TCM) remedy known as Huangqi Guizhi Wuwu Tang. It’s a combination of five herbal extracts, including astralagus root and fresh ginger.

Results:

Her fever and sweats and other side effects disappeared or improved.

She had no (or minor) side effects from the herbal mix.

She has remained stable for 18 years.

Occasional joint pain/backaches, but no bone lesions.

Her renal impairment has not worsened significantly.

Her quality of life is “excellent.”

During the years, the herbal mix and dosage have been modified, based on her symptoms. The basic ingredient, though, has remained astragalus root. You can scroll down the study for a list of all the ingredients. Very interesting!

At one point she stopped taking the herbal mix for “several months.” Big mistake. Her symptoms, including renal function, worsened. She went back on the herbal mix and has not stopped taking it since then.

Based on their patient’s medical case, the authors suggest that “Modified HGWT, especially the Chinese herb medicine Radix Astragali could potentially be an alternative option for the treatment of MM.”

Of interest: astralagus seems to have an effect on the bone marrow microenvironment, which has become almost an obsession of mine in recent weeks, as you may have noticed. So I want to do some in-depth research here.

The BM microenvironment is discussed mainly in the Discussion part of the study. Now, I don’t want to turn this post into a laundry list of “this extract had this effect, that extract had this other effect on this and that” and so on. Too many details, so I suggest that you go have a look at the Discussion when you have the time…

In case you don’t have time, though, here’s the gist:

The herbs used in this traditional herbal mix, with its multiple targets and low cost, “may play an important role in attenuating dysfunction of bone marrow microenvironment.”

Astragalus, in particular.

Very interesting…

Another possible use of this mix, the authors add, would be to relieve at least some of the harsh side effects of chemotherapy. Of course, never take anything without first consulting with your doctor!

But my writing time is running out so I have to end this post…

I wanted to end it with a quote from the study: “Routine physical examination results of the last 2 years showed the patient’s disease remained stable. Though MM is not cured, her life quality is excellent…”

I mean, at this point we know that our myeloma cells won’t just disappear…I can live with that, as long as my quality of life remains the same…or…gets even better (hey, why not shoot for the stars? 😉 )

Andrographolide and bone destruction

February 21, 2018 / Margaret / 10 Comments

Lately, we’ve read and learned quite a lot about andrographolide. But there is more: it can prevent bone destruction. A 2014 Chinese study shows that andrographolide reduces osteolysis ( = destruction of bone tissue) by blocking RANKL signaling. Note: RANKL, a member of the TNF family, is closely linked to the development of bone lesions and is greatly increased in multiple myeloma, which is NOT good.

Here’s the link to the abstract: goo.gl/H6jCef

As for the full study, it’s not available for free online, but I’ve been able to have a look at it thanks to a good friend (whom I met via my blog, incidentally…so we’re friends in real life, too…ahhh, so lovely when that happens!!!). Okay, back to the study…

Bone metastasis is not just a very negative complication of myeloma, but also of prostate and breast cancer. Indeed, as many as 70% of patients with advanced forms of cancer are plagued by bone metastasis, which doesn’t just cause bone pain but also hypercalcemia, fractures, and a bunch of other things that have an extremely negative effect on QUALITY OF LIFE.

This study shows that andrographolide inhibits the development of osteoclasts ( = the cells that chew away at our bones, which is fine in a healthy situation, not fine in cancer where everything goes nutso), while increasing the presence of osteoblasts (bone builders).

The researchers say that the current therapies used to treat osteolytic diseases have many unwanted side effects. And they’re not just referring to bisphosphonates (which can cause osteonecrosis of the jaw) but also to new treatments such as the monoclonal antibody denosumab, Denosumab can cause low calcium levels, weakness, constipation, back/arm/leg pain, anemia…as well as fevers, night sweats, terrible stomach or abdominal pain, hearing difficulties, shortness of breath, severe itching…I mean, the list goes on and on…Mind you, this drug may not cause all of these things, but…it CAN. So, once again, there could be a potentially huge impact on QOL, or quality of life…

The advantage of andrographolide compared to the other conventional drugs is that it isn’t toxic. Big, no, HUGE advantage, I’d say…

As indicated in the abstract, andrographolide blocks RANKL, NF-kappaB, and osteoclast activity, and, consequently, bone destruction.

It also improves bone mass. Very good news for myeloma folks…

Of course, I’d like to see some patient trials. Right now, however, on the clinical trials website, I could find only one Chinese trial testing a chemo drug together (or without) andrographolides on inoperable colorectal cancer patients. No myeloma-andrographolide trials. Well, it’s early yet…

I’m not going to wait, though. I’ve already ordered some andrographolide and plan to test it next month…I have to admit, for the first time in a long time, I’m REALLY excited about a substance I’m about to test. 🙂

Your help is needed for the FIRST large-scale survey on MGUS and SMM patients’ experiences and quality of life

February 16, 2018 / Margaret / Leave a comment

About a week ago I was contacted on my blog’s Facebook Page (see: goo.gl/FQrMQ9) by a Ph.D. student at Queen’s University in Belfast. He asked for my help in getting SMM and MGUS folks to participate in a survey focusing on premalignant conditions, which will be part of his thesis. In a nutshell: he needs to reach as many SMM and MGUS patients as possible.

He is mainly interested in SMM and MGUS patients’ quality of life, how we were diagnosed, what is our level of care, and how we reacted upon receiving our diagnosis.

He wrote: “This is the first large-scale survey on patients’ experiences with premalignant conditions and the plan is for it to be published as a research paper and a component of my PhD. We also plan to produce a summary of the findings for patients to read when we finish.”

He and his team hope that this information will be able to help medical staff to provide the best standard of care possible. That would be really super. I remember being so confused at diagnosis (both MGUS and then SMM), not really understanding what was going on, and so on. It would have really helped to have gotten a bit more information, solid information…

And another thing: when some of the top myeloma experts in the world told me that there was nothing I could do to stop or even slow down progression to full-blown myeloma, except sit back and WAIT, I really did lose hope for a while. Luckily for me, I’m an optimist, so I soon decided the experts were WRONG and began doing a lot of research.

More than 12 years post-diagnosis, things are completely different…for me…But I’m afraid they are not so different for a lot of patients who receive a premalignant diagnosis and are left with no hope…

Of course it would be negative for doctors to give patients false hopes (“oh, everything is going to be fine”…that sort of hogwash). But to take away their hope is equally as bad…Remember David Servan-Schreiber and “false hopelessness”? Exactly.

In a premalignant condition, there is definitely HOPE. And, as I think I have proven throughout the years, there are also a lot of things we can DO. We do NOT have to sit back and fret. No…We can be proactive…in a natural way…I mean, c’mon, we just found out that meditation might have an impact on our progression genes! So much is changing…so much is going on…It’s rather exciting, I must say…

Anyway…

Sorry, I got a bit carried away there. Back to the Queen’s University survey now. I took a few days to think about Blain’s request, since I’ve never publicized anything like this on the blog.

The first thing I did was take the survey myself. I’ll warn you: it takes a while…or at least, it took ME a while, since I had a lot to say (imagine that! 🙂 ). But if you aren’t interested in writing entire dissertations the way I did, practically, all you have to do is say yes or no to the various questions, and that should cut your time in half, at least.

Besides, it’s worth it…It’s an interesting survey…

Okay, enough said! Let’s give Blain a hand, shall we?

The results of this survey could be very IMPORTANT for future patients, but if we don’t take the survey, Blain and his team will have very little to go on, right?

Besides, it’s FREE…won’t cost you anything!

Here’s the link to the survey: goo.gl/EsT7Ki

If you are connected to Facebook, you can follow the study/survey’s progress here: goo.gl/v32Es2

Okay, that’s it! Thanks for your help!!! And please don’t forget, TAKE THE SURVEY!!!!!! 🙂

A MGUS and SMM patient study on the possible impact of meditation in myeloma progression

February 15, 2018 / Margaret / Leave a comment

A recent Patient Power video caught my attention a few days ago, but I was caught up in my andrographolide research, so I ignored it until today. It’s titled “Can smoldering myeloma progress to full-blown myeloma?” The obvious answer is yes, it can, of course. We know that.

Here’s the link to the video, which has other interesting things, too: goo.gl/e3ksk1

At one point, Dr. Raje talks about a Harvard project, called the , during which MGUS and SMM patients used meditation and mindfulness to try to stop progressing to full-blown myeloma. The study’s main purpose is to look at the genomic profile of these patients to ascertain if meditation could actually change the genetics of myeloma progression. Isn’t that something?

Dr. Raje adds, don’t worry too much about your disease…makes common sense. And perhaps, with the data they are collecting from patients right now, we will soon have actual proof that stress can have an impact on our progression genes….Wowsie.

We know that stress plays a big role in myeloma. We’ve known that for quite a long time (remember the 2008 Ohio State study on myeloma progression and norepinephrine, = one of the stress hormones? Exactly…). Certainly at times it isn’t easy to reduce stress levels, and I myself am not always successful (life complications, you know!). But I try! And meditation really does help…It helps even to just close your eyes for a few minutes and visualize a beautiful country or place you’ve visited, an event that made you happy, whatever.

You don’t necessarily have to follow a course to learn how to meditate (I never have)…although you could, of course! I’ve found my own meditation method, mainly based on watching online videos, and it works well for me. Anyway…

But this is the first time I’ve heard a conventional myeloma doctor mention MEDITATION as a possible way of avoiding progression. And I didn’t know about this project…Something to keep an eye on, for sure…

Dr. Raje added that their results would be presented at ASH later this year. So we have a while to wait. However, I did find this abstract, published in the Journal of Clinical Oncology in May of last year: goo.gl/68nYeq

This link informs us that the experiment has been going on for a while now, and that this meditation program REDUCED STRESS, indeed DISTRESS, “in participants with intermediate or high-risk MGUS and SMM…”

Boy, I’d love to participate in something like that. A slight, er, obstacle is that I live across the pond…! Oh well!!! I’d also love to hear from someone who might be in the program…

Time for dinner…Have to rush off…Take care, everyone! 🙂