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! 🙂

Andrographolide and parthenolide kill myeloma stem cells

February 14, 2018 / Margaret / Leave a comment

My andrographolide-researching blog reader also sent me the link to a 2011 U.S. study on the effects of parthenolide (remember PTH? Remember DMAPT? Yeah, I haven’t written about it in a long time…making mental notes right now…) and andrographolide on myeloma stem cells: goo.gl/3e6Nk5

That’s right…on MYELOMA STEM CELLS.

Problem: only the abstract is available for free online. With the help of a fab friend, however, I was able to read the full study, but I have to be careful about copyright issues, even though it irks me that you have to pay for studies that could be of vital importance to us. Of course, I DO understand that journals need to survive. And so…well, let’s have a look, without going into too much detail. Compromises…

Incidentally, this is the first study discussing “a natural product with anti-CSC activity in myeloma” (CSC = cancer stem cell).

As we all know, the main problem with myeloma is RELAPSE. Relapse is caused by the tough myeloma stem cells, the cells that can clone themselves, the really bad thugs that escape being killed by chemotherapy. The chemo drugs used in myeloma target the general plasma cell population, that is, the cells that cannot reproduce themselves, BUT they are NOT able to eliminate our myeloma stem cells. So no matter how many chemo bombs we throw at our myeloma, there will always be a handful of nasty ruffians in hiding, ready to come out and start proliferating again at some point.

This study shows that parthenolide AND andrographolide do just that: they go after the ruffians. The abstract calls them two “potent anti-MM-CSC agents.”

Potent…I like that!

Okay, I’m going to see if I can extract some gems from the full study.

As we’ve seen, it’s not enough to target the circulating plasma cells. If we want to get rid of the myeloma weed, we must go after the stem cells, the “clone troopers” (Star Wars, anyone? 😉 No, I’m not really a fan, but I do remember that expression…). The only way to prevent relapses is to kill the cloners!

Parthenolide is the first extract to be discussed. In addition to being a powerful NF-kappaB inhibitor, parthenolide (PTH from now on) kills the stem cells of myeloma and of acute myelogenous leukemia, without killing the normal hematopoietic cells, the good guys, which produce red/white blood cells and platelets. One big problem has been PTH’s has low solubility in water (but remember DMAPT? It’s water soluble… but these researchers don’t mention DMAPT, except in their References…anyway…).

Andrographolide (AGR from now on) hasn’t been studied as much as PTH. However, it’s more soluble in water compared to PTH. That is very good news…

The researchers point out that melphalan and bortezomib “are not curative” (their words, not mine), because they don’t target the MM stem cells.

But, they add, that’s what PTH and AGR do…

One of the coolest things about this study, IMO, is that the researchers used a 3-D tissue culture of rBM, which is basically a reconstruction of a bone marrow microenvironment (rBM stands for reconstructed bone marrow). They also used 2-D cell cultures. They were able to confirm that the main target of PTH and AGR were the myeloma stem cells.

Clearly, more research is needed…more testing…but I’d say that this study shows how promising these two extracts are. We need to rip out the myeloma weeds…without harming ourselves in the process…

Testing promising natural extracts is a step in the right direction.

Are our official myeloma organizations going to do something about this very important study??? C’mon!!!!!!

A new anti-myeloma substance: andrographolide

February 13, 2018 / Margaret / 1 Comment

A blog friend (thank you!!!) sent me the link to a few studies on andrographolide, extracted from a medicinal plant called Andrographis paniculate, native to South Asian countries and also known as the “king of bitters.” The leaves and underground stems of this plant are used for about a million purposes: to prevent and treat colds and the flu, to treat digestive disorders (diarrhea, colic, stomach pain and so on), liver conditions (jaundice, liver damage caused by medications), infections (all sorts, from pneumonia to rabies, even HIV/AIDS), and skin conditions.

The list is seemingly endless and even includes snake bites, loss of appetite, kidney problems, hemorrhoids, worms (ugh). It has antibacterial, anti-inflammatory, antiviral, anti-tumor, anti-fungal, and immune regulatory, properties. It also protects the gallbladder and the liver. Oh, and apparently it is good for the heart, too!

But the main reason I’m writing about this seemingly amazing substance today is because it has ANTI-MYELOMA properties. What I really like about this new (new to me!) substance is its “low toxicity and low cost.”

Luckily for us, the main andrographolide-MM study, published in 2015, is available for free online, so you can read it, too. The whole shebang can be found here: goo.gl/Z9CaVF

Incidentally, this is the first study to discuss the effect of andrographolide on myeloma cells…

According to the abstract, these two Chinese researchers showed that andrographolide reduced the proliferation of MM cells and increased their death rate (apoptosis) by inhibiting the NF-kappaB pathway that we’ve learned so much about in all these years.

Results: as mentioned in the abstract: 1. andrographolide blocks the proliferation of myeloma cells; 2. It also KILLS them (“induces apoptosis”). And that’s really all we need to know, although the study offers other important details, too.

Let’s look at one of them, since it is connected to an item of MUCH interest that pops up later in the study: andrographolide reduces the levels of the TLR4 protein and of the NF-kappa B pathway in myeloma cells.

Discussion: andrographolide also inhibits angiogenesis, which is so important for the survival and wellbeing of myeloma cells, so that’s good to know, too.

Now we get to the above-mentioned importance of the TLR4 protein. TLR4 is apparently involved, not in a good way!!!, with a tumor’s microenvironment and has a lot of power over immune cells. So, if its activity can be blocked, that’s very good news. With andrographolide, this can be accomplished…

I mentioned TLR4 in one of my earliest posts, written in 2007: TLRs, or toll-like receptors, play a key role in the immune system. Back then, I was interested in the fact that TLR4 is inhibited by…yes…curcumin. This all makes sense, eh?

Anyway, definitely a very interesting substance. I’ll be looking at more studies on this topic in the next few days. I think it might deserve more than just ONE post. Right now it’s at the top of my list of stuff I intend to test…

“The bone-marrow niche in MDS and MGUS: implications for AML and MM.” Part 3.

February 7, 2018 / Margaret / Leave a comment

Final post on the Dana-Farber study.

–Another thing mentioned in my 2013 post (see my Jan 31 2018 post for the link) is mentioned in this Dana-Farber study, too: PD-1, which stands for programmed cell death protein 1. Blocking the activity of this protein, which is highly expressed by MM cells, helps our immune system react against the cancerous cells. The Dana-Farber study informs us, however, that the conventional agents used to block PD-1 have been found to be toxic and not very effective, so the patient studies are currently on hold.

But guess what? Curcumin blocks PD-1, without any toxic side effects. Of course, curcumin isn’t a drug, so we cannot expect it to work like one. But it’s one MORE thing that curcumin does.

–There is another target called CXCL12, a chemokine protein (don’t ask!) secreted by stromal cells that helps myeloma cells become drug resistant, among other bad things. If CXCL12 is inhibited in early stages, however, progression to myeloma can be delayed or even prevented.

28 patients with relapsed or refractory MM participated in a relatively recent clinical trial testing bortezomib, dexamethasone, and something called olaptesed pegol whose target is CXCL12. There was a “clinical benefit rate” for 75% of these patients. Not sure what that means, and we are also told nothing about the patients’ quality of life, stuff that I imagine is of HUGE interest to all of us. Oh well.

My comment: curcumin inhibits CXCL12.

I don’t want to go overboard with too many details. So let’s get to the study’s conclusions.

This group of researchers maintains that targeting the myeloma-friendly bone marrow microenvironment is crucial. It might prevent disease progression to myeloma and increase the effectiveness of conventional treatments after progression has taken place.

But the research is in an early stage…more studies are needed.

In the meantime, I say, let’s stick to the “Watch and Wait” strategy (while taking non-toxic stuff and having a normal, splendid life). Until you have CRAB symptoms, it’s the best strategy on the market today.

Incidentally, why don’t we rename “Watch and Wait” with something that sounds more proactive? I mean, most of us aren’t just sitting back and just waiting for a brick to fall on our heads, right? We’re doing something!!!

So, any suggestions?

Margaret's Corner

Month: February 2018