A close Italian friend of mine has borderline MGUS-SMM. With every test, her markers go a bit up, then a bit down, then a bit up. It has been this way for years: she was diagnosed with MGUS when she was in her early 20s, and she is now in her early 50s. She and I have a completely different approach. I want to know every little detail about MGUS, SMM and MM. She has never wanted to know and still doesn’t want to know. And I am beginning to think that she was right, in the sense that she has managed to avoid, in her own way, all the stress that accompanies a diagnosis like this one. She knows, of course, that it is important to have blood tests done every six months, and she follows her hematologist’s advice. But that’s it. She has never had any conventional treatment for her MGUS, nor has she followed any alternative treatments. And she has done, and is doing, very well.

My friend is a competition-level swimmer. She belongs to a team, consisting of swimmers her age who travel all around Europe participating in competitions, obviously not at the Olympic level, but still serious stuff. I am writing about her today because a couple of weeks ago she travelled to Southern Italy, where she and other 28 swimmers from all over Italy (also one German and a couple of French swimmers) participated in an extraordinary non-competitive swim across the Strait of Messina, which is a ribbon of water (3.3 kilometers, slightly more than 2 miles, in its narrowest point) between Sicily and Calabria. This is not an easy swim: the currents are very strong and treacherous. Nor is it a simple event to organize: all sorts of permits must be obtained in order for swimmers to make this crossing. The usual heavy ship traffic through the Strait must be stopped, for instance, and each swimmer must have a boat following her/him. And so on. Of course, these rules exist for the safety of the swimmers. And at the end there are no prizes, no, not even one little award. The swimmers participate in this competition just for the fun of it.

Well, I am happy and proud to report that my friend swam across the Strait in less than one hour (apparently and luckily, that particular day the currents were not so strong) and arrived first in her group. Yesterday, while we were playing cards with another close friend of ours, she told us about the crossing, how absolutely amazing it had been. The water was, or seemed!, crystal clear, the day was perfect, one of her team members saw a swordfish, and she never panicked, even though she had never attempted anything this dangerous. 29 people swimming across the narrow channel that divides Sicily from mainland Italy: what a spectacle that must have been. I am sorry I was not able to be there!

Yesterday I asked her (jokingly, of course): “So, what’s next, the Atlantic?” Her reply: “What’s to stop me?” What, indeed? 🙂

I am about to leave to go play cards with my girlfriends and eat ice cream!, but I thought I first would post a joke, sent to me recently by a friend (thank you!). It gave me and my parents a giggle. 🙂 Here goes:

Morris and his wife Esther went to the state fair every year, and every year Esther would say, “Morris, I’d like to ride in that helicopter.” Morris always replied, “I know, Esther, but that helicopter ride is fifty dollars, and fifty dollars is fifty dollars.”

One year Esther and Morris went to the fair, and Esther said, “Morris, I’m 85 years old. If I don’t ride in that helicopter, I might never get another chance.” To this, Morris replied, “Esther, that helicopter is fifty dollars, and fifty dollars is fifty dollars.”

The pilot overheard the couple and said, “Folks, I’ll make you a deal. I’ll take you both for a ride. If you can stay quiet for the entire ride, I won’t charge you one cent! But if you say just one word, it’s fifty dollars.” Morris and Esther agreed, and up they went. The pilot did all kinds of fancy maneuvers, but not a word was heard. He did his daredevil tricks over and over again, but still not a word. When they landed, the pilot turned to Esther and said, “By golly, I did everything I could to make you yell out, but you didn’t. I’m really impressed!”

Esther replied, “Well, to tell you the truth, I almost said something when Morris fell out, but you know, fifty dollars is fifty dollars.”

A lot of interest on the MM listserv concerning cyclopamine. Rightly so, I might add. I am still poring over the scientific studies dealing with this topic, but some of the jargon is beyond my “translating” abilities. So this will take a bit of time (which I do not have, at present!). However, I did find out a couple of things, which may be of general interest.

1. cyclopamine is very expensive: one gram costs $ 5,000. I would be happy to provide more info to anyone interested (the company name, etc.). It appears that cyclopamine is sold in a powder (?) form, since there are warnings on how to store and handle it (wear gloves and a mask, etc.);

2. initially, the MM listserv member tested cyclopamine together with Revlimid and Dexamethasone (the latter: pulsing, every 4-5 weeks). He reports, though, that his M-spike had not decreased on the latter two drugs, which by then he had been taking for seven months. However, when he added a daily dose of 200-300 mg of cyclopamine (mixed in water) for ten days, his M-spike went from 0.9 to 0.4-0.5. His most recent self-administered cyclopamine test lasted 15 days, again at 200-300 mg/day. At that point he added lovastin, a cholesterol-lowering drug. The lovastin-cyclopamine combination, by the way, was tested in a research trial at Johns Hopkins (see the January 2007 Johns Hopkins press release: http://tinyurl.com/2m92jg). When administered together, they killed 63% of brain cancer cells; when used separately, that number went down to less than 20%. At any rate, on this combo, the list member’s M-spike went down to 0.3, and is now down to 0.2. Of course, as with curcumin (in my case), it is difficult to say whether or not it is the cyclopamine. My bet is on cyclopamine, though.

Anyway, the cyclopamine studies and the MM list member’s reports, are very promising. Yes, cyclopamine costs an arm and a leg, but taking out MM by its roots has always been my dream, and this may well be another (non toxic) step in the right direction.

This morning a MM listserv member reported on something that he has been taking for the past two months called cyclopamine. I’d never heard of it before, or perhaps hadn’t paid any attention to it, so I looked it up. Well, this may be one of the most exciting things I have read about in recent times. I still have some (a lot of?) research to do, but I thought I would post some preliminary findings. I still have to read all of the following studies carefully when I have more time. Not today.

The remarkable story of how cyclopamine was discovered can be read in the following 2005 article published in Forbes: http://tinyurl.com/yu6df5 In a nutshell: in the 1940s and 50s, one-eyed lambs were being born on a farm in Idaho. During an 11-year investigation conducted by the U.S. Dept. of Agriculture, it was discovered that the farm’s sheep were grazing in fields of corn lilies, flowers that contain a poison (later called cyclopamine ) that does not harm adult animals but does cause birth defects. The Forbes article provides many more details, also about how cyclopamine later came to be of interest to cancer research. Fascinating. Cyclopamine was found to inhibit a gene known as Sonic hedgehog, which is involved in the process of adult stem cell division and apparently is crucial for the development of MM, pancreatic cancer and other cancers. For more info on the importance of hedgehog pathways and MM and other B-cell malignancies, please see this July 2007 study: http://tinyurl.com/2g6kk6.

A team of researchers at Johns Hopkins made the connections between cyclopamine, the Idaho lambs and the hedgehog gene. Their findings were published in 2002 in Genes and Development (http://tinyurl.com/38vppa). A few years later, in 2006, a Stanford study published in PNAS tells us that the hedgehog signalling (or Hh) pathway is crucial for the proliferation of MM stem cells. Well, lo and behold, cyclopamine inhibits that pathway: http://tinyurl.com/2hx5yd.

As I mentioned, I have been able to glance only at the conclusions of all these studies, but plan to read them carefully soon. My time has run out, but I did want to post quickly about this bit of extraordinary news. If we can get rid of our cancer-making stem cells, we can kill off the remaining cancer cells with curcumin or resveratrol or whatnot. How about that? A couple of final questions (and this is another reason why I need to do more research!): how come cyclopamine targets only cancer stem cells? Why doesn’t it target non-cancerous stem cells as well?

Last year, for months I mixed curcumin powder with all sorts of fat concoctions (coconut milk, flaxseed oil etc.), in an attempt to find a palatable one. No matter how careful I was, the bright yellow powder seemed to end up on, and stain!, every surface in my kitchen–my white kitchen counter, my black and white male cat (whose white paws turned yellow and stayed yellow for weeks), and everything I wore, including two of my good white cotton turtlenecks. After the first week, I learned my lesson, duh!, and began wearing dark clothing and a black apron. I also handled the powder over my stainless steel sink, not over my kitchen counter (I had to use bleach to get rid of the yellow stains on the counter). At any rate, I thought the clothing stains would be permanent, since turmeric is used as a dye in India. Hmmm, well, I may have been wrong. Perhaps those stains will finally come out.

Yesterday, in fact, I read a Boston Globe article written by Dr. Knowledge (two physicists from Northeastern University, actually). Dr. Knowledge tells us a few things that we already know, that turmeric contains more or less 5% of its active ingredient, i.e., curcumin (5 to 8%, as far as I know), and that curcumin dissolves in oil and alcohol but not in water. And that, the physicists say, is why water will not get rid of curcumin stains. In fact, they say, if you put some curcumin powder and some water in a bottle and shake it, the water will not turn yellow but remain pretty much clear, but if you shake a bottle containing curcumin powder with oil or alcohol, you will end up with a bright yellow/orange mixture. I have actually tried doing that, and it is true! So, what about those stains?

Why does turmeric create such stubborn stains, and how can they be removed? Boston Globe. July 23, 2007

[ ] This leads to the first thing you can do to try to get curcumin stains out — try using alcohol or oil. Of course you then need to get the alcohol or oil out which you can do by flushing with water (in the case of alcohol) or washing with soap or detergent (in the case of oil). Curcumin is also fairly unstable in the presence of ultraviolet light, so you can “bleach” out the stain by leaving it in bright sunlight. You may also have some luck with bleach, but if you’re worried about damaging colored fabrics, the sunlight trick can be a good one.

By the way, you can read the full text of this Globe article at: http://tinyurl.com/yqouto I am going to try these remedies. Can’t hurt! Good luck with your curcumin stains, if you have any! 😉