A HELP PAGE created in June 2011

[Work in progress…suggestions appreciated…]

Last month, a blog reader, = a research scientist with myeloma, suggested that I create some sort of “master listing” that would make it easier for readers to locate stuff. Good idea. I’ve realized for some time now that my blog has gotten a bit out of hand, as the saying goes. There is an amazing amount of information here (a lot of which comes from you, my readers!). Unfortunately, compared to a proper website, the blog format is a bit constraining, so I wasn’t able to get toooooo creative. Still, I hope that what I’ve done will be of help…especially to new readers… 🙂

In 2007, when I created my blog, who’d have thought I would find so much material? Back then, what I knew about anything “alternative” could have fit into the smallest pocket of my jeans. I had no idea that there were so many studies on non-toxic, anti-myeloma substances out there. And now there are even more…It’s encouraging…but frustrating at the same time, when you realize that most of it, most of this amazing research, gets totally ignored, even the most promising items, mainly because it’s not profitable…That is why our role, as patients, is so incredibly important. And we can make things change. Many MM doctors know about curcumin (no matter what they think about it, they KNOW about it) now. That was NOT the case when I began taking it (Jan 2006). But I digress, as usual!

Point is, my blog eventually became this huge, er, THING…daunting even for me, the creator/researcher/writer. I mean, I sometimes have trouble remembering if I’ve already written about a certain substance and have to double-check my own blog, using the Search box…Speaking of which, when I revamped my Page section, I put the blog Search box at the top, where I have also now put the section devoted to readers’ comments, which are always fun and interesting to read…informative, too!

At any rate, I hope what follows will make things easier for you, and perhaps even for me…Okay, ’nuff said. Let’s dive right in…By the way, if I do NOT put a direct link next to the item (below), it means that I’ve written too many posts about it…so you should just do a search of my blog or, if you can’t find what you’re looking for, just contact me directly…

POSSIBLY BAD STUFF:

• Gadolinium: http://margaret.healthblogs.org/life-with-myeloma/what-is-multiple-myeloma/mris-and-gadolinium/
• Asparagus: http://margaret.healthblogs.org/2011/06/09/no-more-asparagus-for-me/
• Hyaluronic acid: http://margaret.healthblogs.org/life-with-myeloma/what-is-multiple-myeloma/myeloma-and-hyaluronic-acid/
• Gluten intolerance (?): http://margaret.healthblogs.org/life-with-myeloma/what-is-multiple-myeloma/multiple-myeloma-and-celiac-disease/

POSSIBLY GOOD STUFF (Check under “Other anti-myeloma/cancer substances”). Here is a list of stuff I’ve tried:

• Curcumin, C3 Complex (in various clinical trials)
• Fish oil, molecularly distilled (clinical trial, MGUS/SMM/CLL patients)
• Quercetin (no more than 1.5 grams)
• Vitamin D
• Ashwagandha/Indian ginseng/withanolides (an interesting ashwagandha/curcumin trial in osteosarcoma is recruiting patients right now)
• Resveratrol (see my notes on the terminated SRT501 trial)
• EGCG/green tea (clinical trial, MGUS/SMM patients)
• Saw palmetto/Serenoa repens
• Reishi/Ganoderma lucidum (need to retest; ran out of capsules…)
• Black cumin/Nigella sativa
• Scutellaria baicalensis/Chinese skullcap
• Capsaicin

Now for stuff I still haven’t tried (and may never try…either because it’s too risky/toxic or because I haven’t found a reliable, affordable AND safe source):

• Betulinic acid
• Boswellia
• Butein
• Cardamonin
• Ciclopirox olamine (clinical trial, patients with relapsed or refractory hematologic malignancies) and Piroctone olamine (these are both anti-fungal treatments)
• Cyclopamine (possible eradication of the MM stem cell; BUT too toxic to try, in my opinion)
• Emodin/turkey rhubarb
• Genistein
• Guggulsterone
• Hesperetin
• Honokiol
• Kinetin riboside
• Moringa oleifera
• Oleanolic acid/olive oil & leaves (an interesting clinical trial is currently testing olive polyphenols on postmenopausal women with decreased bone mineral density)
• Papain/papaya
• Pristimerin
• Sea cucumbers/TBL 12 (currently being tested on untreated asymptomatic myeloma folks in two clinical trials in NYC)
• Sesamin
• Ursolic acid
• Xanthohumol (hop plant…beer!)
• Zalypsis

Note: If you’re on doxorubicin, eat spinach: http://margaret.healthblogs.org/2011/06/05/if-youre-on-doxorubicin-eat-spinach/

DIET: I don’t have any particular advice in this department…except to say that there are a number of cancer-fighting foods that should be part of our diet (whenever they are in season), such as anything in the broccoli family, as well as onions, garlic, turmeric, ginger…Also, try to cut down on your sugar intake (cancer cells LOVE sugar). Since 2005, I have cut down on my sugar intake. And I also cut down on pasta during summer, when it’s too hot to eat it anyway…Ah, and here is a note: Dr. Nicholas Gonzalez found that his myeloma patients did best on a high-protein, high-fat diet. Now, I’m not an avid meat-eater (on the contrary!), so the high protein part is a bit of a problem for me (see my Page for more updated details, though)…

IMPORTANT POINT: take a daily dose of hearty laughter…the kind of laughter that makes your belly shake and ache…Myeloma cells, you see, have no sense of humor and really hate it when we laugh… 🙂 So have a look at the Laughter section of my blog…lots of funny stuff, there…jokes and links to funny videos…

OTHER IMPORTANT POINT: try to avoid stress…See my page on Myeloma and stress: http://margaret.healthblogs.org/life-with-myeloma/what-is-multiple-myeloma/multiple-myeloma-and-stress/

As I mentioned, this is a work in progress. The Page (on the right) won’t have all the introductory stuff, of course. Otherwise, it’d be too long. Okay, I have to go now. Have a great Sunday, everyone! 🙂

I recently came across a rather curious item called glycyrrhizin, which is extracted from the root of liquorice, or Glycyhrrhiza glabra, a plant native to Turkey, Iraq, Spain, Greece and northern China. According to Wikipedia, it is 30-50 times as potent as table sugar. But it is not merely a sweetener. In ancient Greece, China and Egypt (see the MD Anderson write-up: http://tinyurl.com/2ylhja), liquorice was used to treat gastritis, coughs and colds. The MD Anderson summary gives an interesting bit of the history of liquorice; for instance, in ancient Egypt a liquorice drink was used to to honor spirits of the pharaohs, and then during World War II a Dutch physician discovered that it was effective against peptic ulcers. I should note that the liquorice FAQ page has not been updated since 2005 but is still informative (side effects, dosage and whatnot).

Glycyrrhizin is the active ingredient of liquorice root: it has anti-viral activity, ranging from the flu virus to herpes simplex and even hepatitis B and C; liver-protective (hepatoprotective) effects, and anti-HIV activity. It also clears up microbial and parasitic infections, is a thrombin inhibitor (see: http://tinyurl.com/364qr4), and is effective against allergies, chronic fatigue, asthma, arthritis and free radicals, just to give a few examples. Oh, and how about this for an interesting titbit (see: http://tinyurl.com/3yx72p)? Glycyrrhizin inhibits the replication of the SARS virus (remember that scare a few years ago?). It also apparently inhibits NF-kB and has anti-inflammatory properties. Very good. Nope, no studies on glycyrrhizin and MM cells. Too bad. However, there are other studies, so here follows a bit of a laundry list.

A June 2007 study (http://tinyurl.com/2mr62v) examines the cytotoxicity of glycyrrhetinic acid (GA) in combination with dehydrozingerone (DZ). The latter is extracted from ginger and possesses anti-inflammatory and antioxidant properties. I am going to do more research into this particular combination, but for now, I will leave it at that. When combined, these two conjugates were found to have potent cytotoxic activity ; however, when administered separately, they “were inactive.” An August 2007 study (http://tinyurl.com/38rhx3) examined sixteen GA derivatives and determined which had the strongest anti-proliferative and apoptotic effects against the previously-seen HL-60 leukaemia cells. This apoptotic effect on HL-60 cells had already been observed, as can be seen in this 2005 study: http://tinyurl.com/28osnh A 2006 study (http://tinyurl.com/3yd7q8) looked at the effects of a glycyrrhizin extract on human hepatoma, promyelotic leukemia and stomach cancer cells. Apoptosis was again the result.

A 2005 study (http://tinyurl.com/2sssqa) states that Glycyrrhetinic acid (GA) and its related compounds are known to have anti-inflammatory activity and also to inhibit liver carcinogenesis and tumor growth. It concludes that GA may be important in the treatment of liver cancer. Another 2005 study (http://tinyurl.com/38oszl) shows that GA protects our bodies from the damage caused by UVB radiation, but has no effect on metastatic melanoma cells. A 2001 study (http://tinyurl.com/2sc6nv) tells us that Glycyrrhizic acid is an inhibitor of lipoxygenase and cyclooxygenase, inhibits protein kinase C, and downregulates the epidermal growth factor receptor. Licorice polyphenols induce apoptosis in cancer cells.

This is all very interesting, and there seems to be a lot of apoptosis going on, but, and there is a but!, it appears that ingesting too much glycyrrhizin could be fatal if you suffer from hypertension, heart disease or have water retention problems (you can read more about that in the MD Anderson FAQ page, and also see my September 25 2020 post https://margaret.healthblogs.org/2020/09/25/too-much-licorice-may-kill-you/ ). In fact, this German Senate Commission on Food Safety report (http://tinyurl.com/2tor53) recommends that no more than 100 mg should be ingested per day on a regular basis. High doses of this compound may also reduce potassium levels. Of course, we MMers don’t want that to happen!

Final note. There is a type of liquorice without glycyrrhizin, known as Deglycyrrhizinated liquorice or DGL. So you can still enjoy the taste and some of the benefits without any unwanted side effects. And the following just occurred to me: some curcumin-takers have reported having gastric problems after ingesting curcumin well, how about trying some liquorice to settle your stomach? And here is a thought (to be discussed with your doctor, of course) for those doing chemotherapy or about to have a SCT: taken in powder form mixed with water (as a mouthwash), I read that DGL can be effective against mouth ulcers. It can also can help prevent nausea and vomiting. I don’t like the taste of liquorice, actually, but if some day a study proves that it has an anti-MM effect, I will be running to the nearest…liquorice store!

 

Now that I have had my June blood tests, I have begun my summer supplement experiment. A few months ago I ordered curcumin capsules without bioperine from a reliable company in Milan. So this summer I want to see if the no-bioperine capsules will work as well as the ones with bioperine that I have been taking since last fall. I won’t change anything else about my intake, which will still include quercetin and oil capsules, and an occasional folic acid pill. A quick note: my Italian curcumin capsules are much smaller than my U.S. ones. I checked their weight (following the example of my friend Don, please see his informative Myeloma Hope blog), and found it to be correct. Why make big capsules if smaller ones work just as well? Smaller capsules are much easier to swallow, so that would be another point in their favour, if they work.

In the fall, I plan to take on a more ambitious project. I have ordered Chinese skullcap capsules (see my Scutellaria Baicalensis page for more information). I will test those for a couple of months and see what happens. When I say test, by the way, I don’t mean that I will stop taking curcumin. Too many potential risks involved (increase in IgG count and so on). Curcumin is to me what a security blanket is to the Peanuts’ character Linus.

Ending on a more personal note. I wish to thank those of you who suggested many wonderful names for our new kitten, who will be joining our merry household on July 10 (more or less). My Mom yesterday suggested Peaches, which I really liked. But last night my husband came up with what I consider to be the best name so far: Peekaboo. We will probably spell it the way it should be pronounced in Italian, that is Pikabu. Our mischievous furry baby loves to play peekaboo, so the name fits perfectly. Is there a cuter kitten in the world? I doubt it! I have no super recent photos, unfortunately; this one was taken about a week ago.

Puzzola showed up on our doorstep in September of 2001, almost as soon as we had moved into our home on the outskirts of Florence. She was skin and bones. Mostly bones. She was probably four or five months old at the time. Our cat-loving neighbours and I started feeding this affectionate little creature, who was clearly not a stray but had lived the first few months of her life with a family that had then abandoned her in our neighbourhood. Every time we went outside, there she was, our faithful little Puzzola, ready for some food, but also for love and caresses. Whenever we opened the front door, she would zoom inside, and we would have to rush after her and gently put her back outside. Until one day. She came inside and has stayed with us ever since. See, at the time we didn’t want another cat. We already had a cat, my Canadian cat, Keshé, whom I had gotten at a cat shelter in Toronto (unfortunately, she died of renal failure about six months after she arrived from the States, where she had been living with my parents until we got more settled here). But Puzzola was very insistent, and we had fallen in love with her, so it was just a matter of time.

Her name has a couple of meanings in Italian. In the beginning, the “aroma” emanating from her droppings in the litter box would send us scampering for shelter. I am not kidding. So the first meaning is: skunk (I happen to think skunks are gorgeous creatures, by the way). Puzzola is also the common Italian name for “marigold.” And our green-eyed Puzzola is most certainly a lovely flower, as well as the sweetest cat I have ever had.

One of the funniest and most remarkable things she does is to sit on our large farmhouse dining room table while we eat dinner. In the beginning, it was a bit disconcerting. Now we are used to it. As soon as I finish eating and push away my plate, I raise my hand, and that is her signal. She gets up, walks across the table and climbs into my lap, purring and kneading. But the amazing thing is, she won’t budge from her spot in the corner of the table until I let her know it’s okay. If Piccolo or Priscilla get on the table mamma mia, forget it. They MAY begin by sitting down at the end of the table, looking deceptively innocent, but they will begin inching closer and closer to our plates, trying to get their silly noses in our food. So they are not really allowed on the table. (Well ) [In this photo, by the way, Puzzola is pointing out the benefits of pure resveratrol 😉 ]

Even though Puzzola gets into my lap after dinner, she is definitely my husband’s cat. She worships him (perfectly understandable). Almost every evening, especially if he is late, she waits by the front door, listening. She gets very agitated when she hears his car approaching, starts meowing and stretching upwards, as though wanting to open the door for him. She doesn’t sleep with us. Our bed is too crowded for her, with the two youngest cats on it. She also doesn’t really play. I don’t think Puzzola played much as a kitten, unlike the other two. She had to scavenge for a living until she chose us as adoptive parents. So she just sits and watches Piccolo and Priscilla roll about on the floor. If they try to involve her in their fun, she runs up to the attic. She has dignity. She is our queen.

After several attempts, I finally managed to take a decent photo of my camera-shy buzzing friend this morning, busily collecting nectar from my monster raspberry plant, which grew from a tiny half dead shoot that I brought back to Italy from my parents’ back yard in the U.S. a couple of years ago. Mr. Honeybee is a bit out of focus, but it’s the best I have been able to do.

I would like to start out by thanking all the comment-writers. I REALLY enjoy receiving comments. For one thing, it tells me that my posts are actually being read! 😉 For another, many of your comments have given me research fodder. Case in point: a recent blog comment posted by a listserv friend about one of his newsgroup correspondents who had developed tongue cancer but couldn’t figure out HOW. He had a healthy, physically active lifestyle and had lived in Asian countries where his diet consisted mainly of hot spicy food. His oncologist told him that his tongue cancer had been caused by those very spices. The first thought that came to my mind was ridiculous!

Spices, as I have previously reported, have well-known anti-inflammatory and anti-cancer properties as well as general healing effects. However, I did go online to see if I could find a study that connected spices to any type of cancer. The result: nothing. Not one study. That doesn’t mean such a study doesn’t exist, of course, so if anybody has more success than I had this morning, please let me know. Did the cancer patient in question smoke, chew tobacco, or drink alcohol? Those are the three main listed causes for tongue cancer (that I found).

Just because you have a healthy lifestyle doesn’t mean you won’t get cancer. Indeed, a close member of my family had a terrible diet, drank quite heavily and smoked but was always as fit as a fiddle and died in her early 100s. It doesn’t make sense, but there it is.

A final point: spicy doesn’t necessarily mean HOT. I cook frequently with turmeric and other mild spices, which don’t set your mouth on fire but leave you with a pleasant sensation and aroma in your mouth: spice without the bite!

I love the Internet! I begin with a research idea and frequently end up going in an entirely different direction. This morning, for instance, I was going to do some more research on the bioavailability of curcumin but came across a fascinating study (http://tinyurl.com/2fh26z) titled Effect of heat processing of spices on the concentrations of their bioactive principles: Turmeric (Curcuma longa), red pepper (Capsicum annuum) and black pepper (Piper nigrum). Researchers tested these spices using three different home cooking methods: in boiling water for 10 and 20 minutes, and in a pressure cooker for 10 minutes. The greatest loss of curcumin occurred in the pressure cooking process: 53 %. Good thing I don’t own a pressure cooker, I guess!

The spices were heated separately and also with tamarind powder, an acidulant, and red gram, a legume also known as pigeon pea. The losses were still significant, although the combination turmeric-tamarind reduced the pressure cooker loss to 34 %. I have been cooking with turmeric and red pepper for a long time. (Since taking curcumin with piperine capsules, though, I no longer add black pepper to my food.) I will now make sure that I don’t overcook these spices, but add them at the last minute. I certainly don’t want to lose too many of their beneficial properties.

I was looking up the medicinal properties of honey and came across a fascinating bit of news by pure coincidence. In 2006, an Iranian pharmacist administered bee venom therapy (BVT) to a patient with MM. The patient improved considerably but, as soon as the venom therapy was stopped, his markers worsened (http://tinyurl.com/3dyj3l). I have not been able to get my hands on the particular study, so if anybody has access to the March 2006 issue of the Journal of the American Apitherapy Society, please let me know! Bee venom is no joke, as I quickly discovered. It stimulates the body to release cortisol, a natural steroid, and is being used to treat multiple sclerosis and rheumatoid arthritis.

Researchers at CSIRO Molecular Science in Western Australia have been trying to modify bee venom to develop cancer treatments that would target only cancer cells, not healthy ones, and cause very few side effects. See: http://tinyurl.com/ywgmlx The main active ingredient in bee venom is melittin, a molecule with potent anti-inflammatory properties (according to Wikipedia, it appears to be 100 times stronger than hydrocortisone!) that attaches to the membranes of cells, causing them to collapse and die. The researchers’ task is to modify this molecule in order to prevent allergic/toxic reactions while maintaining intact its cancer-killing potential. The idea is to create an immunotoxin, that is, a combination of melittin and a specific cancer-killing antibody: melittin-MABs (or melittin monoclonal antibodies). If these attempts are successful, this might mean no more chemotherapy with hair loss, vomiting, weight loss, etc. Just think: only cancer cells would die.

A bit more research led me to the following study (http://tinyurl.com/yvgh3o) published in the International Journal of Oncology in 2003: a melittin/avidin conjugate was successfully used to reduce tumours both in vitro and in vivo. Avidin is a glycoprotein, by the way, and was coupled with melittin to reduce its toxicity. At any rate, this conjugate ignored healthy cells but targeted MMP-2 (matrix metalloproteinase 2), an endopeptidase that plays an important role in cancer metastasis and is active in MM, too. See, for instance, http://tinyurl.com/27m7wm, http://tinyurl.com/3exzcd and http://tinyurl.com/2uxeom

Bee venom, a possible cancer treatment? Who would have ever thought?!

Today I had an appointment with my haematologist. She is a very cautious doctor and doesn’t let on that she is overjoyed when reading some good news (as I imagine she would not show disappointment when reading some bad news), BUT I could tell that she was very pleased with my tests €”my skeletal X-rays (she confirmed that there were no lesions) and most recent blood tests. She told me that she wants to see me 4-6 months from now, and that is how she let me know that she thinks things are definitely going well. She said I should get in touch with her if something negative shows up on my next tests, but otherwise we can schedule our next appointment in the fall. Yippee!!!

An aside. Whenever I whip out my list of questions, she almost rolls her eyes in resignation. But today we ended up discussing a couple of my most recent research topics, and her final words to me were: I always learn something from you. That made my day. Perhaps my week. My month?

I have always wondered what made me so lucky (tongue-in-cheek!!!) to have developed MM from my previous MGUS condition. Well, an explanation may be close at hand. This morning I read an interesting report on immunity to cancer stem cells that might explain why some people develop a malignant condition while others do not. By the way, I subscribe to the IMF newsletter, which provided the link to this EurekAlert! (http://tinyurl.com/35smgq). Cancer stem cell research is a hot topic right now, but this is the first time I have seen it connected to MGUS-MM progression. In a nutshell, these stem cell researchers discovered that those MGUS patients who had an immune response to a stem cell protein called SOX2 (appropriate name, I would say, except I would have spelled it out a bit more: SOX-it-2U) did not progress to MM. This immunity provided them with a sort of protective shield against MM. To read the abstract, please go to: http://tinyurl.com/2tn6e2 I found it significant that cancer stem cells are the target in this study, not just regular MM bulk cells. And this discovery is could lead to a future cancer vaccine. How about that?!

I will end with a quote by research head scientist Madhav Dhodapkar, “You need to target the roots to really kill the tree, but what we’ve been doing is trimming the branches and it hasn’t worked.” I’m all for working on the roots!