Good or bad for myeloma? That is the question…

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:

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! 🙂

Summer and Fall Supplement Plans

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.Peekaboo?

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.

Queen Puzzola

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 larPuzzola pointing out the benefits of pure resveratrolge 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.

My Friend the Honeybee

After several attempts, I finally managed to take a decent photo of Honeybeemy 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.

Spice Without the Bite!

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!

Heating Up Spices

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.

Bee Stings May Not Hurt So Much After All!

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?!

Haematologist Appointment

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 €”Another Barni rosemy 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?

MGUS to MM Progression: SOX2

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!

Save the Hives!

After watching my little honeybee friend buzz around my raspberry plant today, I decided to write about the worrisome decimation of bee populations in the U.S., Germany and Italy, just to mention a few countries.

In 2005, the Italian Corriere della Sera reported that the bodies of millions of bees had been found dead, scattered around their hives, throughout Italy. Bees began to die in France in the late 1960s, when the molecule of an insecticide sprayed on corn and sunflower seeds contaminated the plants (once they had grown) and the bees that carried the poisonous molecule back to their hives and well, you can imagine the rest. And the really sick part? This insecticide was banned in 1999 but the producers were allowed to continue to sell their stock, rather than destroy it. This article can be read in Italian: http://tinyurl.com/2dojyh

According to a March 22, 2007 Der Spiegel article, millions of bees have been disappearing everywhere. Why is this happening? The reasons given: herbicides, the practice of monocultures, the use of genetically-modified plants. The article can be read (in English) at: http://tinyurl.com/2c5mvc In the U.S., bee deaths have reached the level of catastrophe. Yet I hadn’t read anything about it. Then, just recently, two of the alternative newsletters that I subscribe to contained reports about the bee calamity. I began to get worried.

An April 2007 article from the British Independent (http://tinyurl.com/3cutao) offers the theory that the radiation emitted by our cell phones and other gadgets is causing bees to lose their sense of orientation so that they cannot make it back to their hives. As weird as that sounds, a recent German study has shown that bees will not return to their hives when cell phones are placed near it. My husband and friends used to get annoyed with me because I always keep my cell phone switched off. Well, perhaps I was right after all. (Are you turning your cell phones OFF?)

Aside from the obvious, why am I so concerned? I use organic honey instead of sugar. I know, it’s not like eliminating sugar altogether, but honey has so many medicinal properties that it would be classified as a drug under the new FDA S1082 bill. And keep in mind what Albert Einstein said: “If the bee disappeared off the surface of the globe then man would only have four years of life left. No more bees, no more pollination, no more plants, no more animals, no more man.”