Goodbye, Myeloma Man

The sun is shining in Florence this morning, but it doesn’t look very bright to me out there. I woke up to the sad and upsetting news that Hans Yeager, known to us MMers also as Myeloma Man, passed away on April 1. I still have a hard time believing it. I immediately went to his website only to discover that it is gone. I had meant to read every word of it some day soon. Too late now. It is with deep regret that I will remove the link from my blog.

His wife wrote a very touching account of his last hours; it was posted on one of the MM listservs. No point in repeating the details, here, but Hans was a fighter right up to the end. A brave man.

My most recent and, as it turned out, last exchange with Hans happened in mid March, right after he had gotten out of the hospital. He had just gotten home, and was about to take a shower. He wrote that he would get in touch with me as soon as he felt better, and I replied with a Get Well Soon e-mail. His last words to me were Look forward to conversing with you. Unfortunately, that will no longer be possible.

Germ Killer

One of the bothersome aspects about having MM or SM or even MGUS is that we are more exposed to illness than healthy people with fully functioning immune systems. What happens is that our abnormal plasma cells, or myeloma cells, produce too much of one completely useless kind of antibody, called an M-protein, which doesn’t help kill bacteria and germs, leaving us susceptible to infections. My main problem seems to be my lungs. If I get a cold, it usually goes into my chest, and even my daily intake of curcumin has not made me invincible. I sometimes have to take antibiotics. No big deal, of course, compared what most MMers go through. However, since I refuse to become a hermit or live under a glass dome like an antique teddy bear, my most recent minor complaint has given me the incentive to look up things we can do to prevent colds and the flu. I will skip the more obvious ones, such as: eat well, sleep enough, drink plenty of water, get some exercise, fresh air, laugh, avoid stress, don’t smoke and don’t drink alcohol. I will list only the suggestions that particularly struck me.

1. Common sense tells us to wash our hands whenever we come into contact with potentially contaminated objects. Germs can live on staplers, doorknobs and computer keyboards for hours, and in some cases, I have read, even weeks. Years ago I watched an Oprah show on germs. Tests were performed in various public areas, and I will never forget that flesh-eating bacteria, or necrotizing fasciitis, were found on the handlebars of shopping carts. Yikes. So, while shopping in a supermarket, wear disposable gloves.

2. Flu and cold germs can enter our bodies through the mouth, nose and eyes. Did you know about the eyes? I didn’t.

3. Don’t sneeze or cough into your hand. Cough or sneeze into the open air (if nobody is within a mile of you), into a tissue or into your sleeve. Otherwise, you risk spreading germs to anything you touch.

4. My father-in-law told me about an Italian folk remedy that I haven’t tried it personally (yet). Before you leave home on an errand that will put you in contact with a germ-filled crowd (supermarket, bus etc.), stick a couple of garlic cloves up your nose and leave them there for a few minutes or several hours (just kidding!). Hey, this is no laughing matter. However, do remember to fish them out of your nose before you leave the house. πŸ˜‰ This simple act will apparently enhance your immune system and protect you from outside germs. After all, fresh garlic protects us from many types of fungi and bacteria, including the infamous Heliobacter pylori. And we all know that fresh garlic and onions are good for us when we get sick, so why NOT put some garlic up our nose? Besides, another possible effect is that germy people would be less likely to crowd around you if you smell heavily of garlic. Let’s not underestimate the many powers of garlic. πŸ˜‰

5. Last but not least are turmeric and curcumin. Ayurvedic medicine prescribes turmeric for the treatment of common colds, coughs, sore throats, and upper respiratory disorders. Curcumin has antibacterial, antiviral, antiseptic and anti-inflammatory properties, and is also a mild expectorant. And finally, I read that turmeric is known as kringhna in Sanskrit, which means germ killer. πŸ™‚

Protocol, Spelled Out

I began my curcumin capsule experiment on January 23, 2007, according to my notes. In order not to swallow a million pills at the same time, I divided my dose: one in the morning, one in the afternoon, away from meals. A few months ago, I read the Delano Report (http://tinyurl.com/yyucfp), which examines the possibility that quercetin, a flavonoid found in apples, onions, red grapes, citrus fruits, broccoli and so on, inhibits the sulfotransferase enzymes that render curcumin relatively inactive in the small intestine. I decided to add quercetin to my intake. I took two grams of quercetin about 15-30 minutes before swallowing the curcumin capsules. Each dose consisted of: one gram of quercetin and then four grams of curcumin with bioperine. However, if for some reason I wasn’t at home in the morning or afternoon, I would take one BIG dose once a day, for a total of: two grams of quercetin and eight grams of curcumin. With all those capsules, it was like having a small meal, practically!

On February 12, in order to enhance curcumin bioavailability, I added fish oil capsules, which are very expensive over here. I ran out of fish oil capsules in mid March, and decided to substitute them with black cumin oil (Nigella Sativa) capsules, which contain 500 mg of black cumin oil each. A total of two grams a day. I will be writing about black cumin oil soon, so keep posted. I took the fish oil or black cumin oil capsules at the same time as the curcumin. I also occasionally took some folic acid (starting on February 23) and a multivitamin with iron, but not every day. My main supplement intake was: quercetin, fish oil (later, black cumin oil) and curcumin.

Confession of stupidity. My most recent pet peeve concerns the words serving size written in VERY small print on supplement bottles. My January-April 2007 capsule experiment was not my first experiment with capsules. I had tested them for two months back in September-November 2006, to be precise. However, I hadn’t noticed the tiny print on the back label, which added the information “Serving Size Two Capsules.” There was no mention of per serving on the front label. The front label on my bottle of curcumin capsules reports the following: Turmeric Extract, Curcumin C3 Complex with Bioperine, 1,160 mg. That is IT, apart from minor information such as brand name and number of capsules. So for two months I inadvertently took a half dose of curcumin, four grams instead of my usual eight grams. By the time I discovered my mistake, I had been on four grams of curcumin a day for two whole months! Yikes. Did I feel stupid? Oh yes, indeed! And my blood tests in November 2006 reflected the halving of my daily intake: my IgG count jumped from 26.3 g/L to 32.5 g/L. I immediately switched back to eight grams of curcumin powder taken with a fat. My January 2007 tests were stable, and some MM markers had actually improved. Not my IgG count, though, which had remained at 32.5 g/L. However, it takes much more than that to discourage me (eternal optimist). This simply proved that four grams of curcumin is NOT enough to keep MM down, and I needed more time to give it another good whacking. In January I decided to try curcumin capsules again, this time the full EIGHT grams! Sorry, this is long and perhaps overly detailed, but I thought I should explain what happened. Besides, confessions of stupidity are good lessons in humility. Or so I hope! Yesterday I was just too overwhelmed with happiness to write out a full report. So, a final word of advice: before taking any supplement, check the small print on the back label! Front labels can be SO misleading. Live and learn but best to learn from the mistakes of others. πŸ˜‰

When yesterday I wrote about not having been careful about my diet during the Xmas holidays, I should have explained that my biggest downfall were my Xmas cookies. Every year, I make HUGE batches of cookies for friends and family, following wonderful U.S. recipes chock-full of butter (REAL butter, never use margarine!) and chocolate and white or brown sugar. Last Xmas, in an attempt to be more health-conscious, I experimented with oatmeal spice cookies to which I also added turmeric. They were yummy (lovely bright yellow colour, too!), even though I know they will never replace my famous chocolate chip ones! Thing is, I had to TRY them first to make sure they were good enough to be given as presents. Right? πŸ™‚

Curcumin Capsule Results

I just received my most recent (early April) blood test results. Premise: after hearing from other curcumin-takers that capsules worked well, I decided to give them a whirl (see my Bioavailability of Curcumin page for information on how I previously took curcumin). So I have been taking curcumin with bioperine capsules for more than two months. Well, well. The capsule results are better than I expected. In January 2007, my IgG count had gone up to 32.5 g/L, from a September 2006 low of 26,3 g/L. Quite a scary jump! I was not discouraged, though. These fluctuations can happen, and this particular one was my own fault (I didn’t pay too much attention to my diet over the Xmas holidays, etc.). Anyway, according to my April results, my IgG count has gone back down to 28,8 g/L, and there has been no change in my other immunoglobulin counts. That’s the first good bit of news.

Comparing my main MM markers in my January 2007 and April 2007 tests: Creatinine is down from 0.9 to 0.7 mg/dL, within normal range; Calcium is stable, within normal range; LDH is down from 168 to 139 U/L, within normal range; Total protein is down from 9,1 to 8,6 g/dL (the latter value coincides with the high end of the normal range, yippee!); B2M is down from 1,8 to 1,5 mg/dL, within normal range; CRP is within normal range (my hospital lab doesn’t give an exact CRP number, only reports that CRP is < 9,0 mg/L); Albumin is still within normal range, stable at 49.5 %. My cholesterol and triglyceride levels have taken another tumble, so I am very pleased about that, too. So, very good results. Have I forgotten anything? Please let me know. I will soon be posting the exact protocol that I have been following since January. But first I want to look over my notes and rejoice a bit with my family. It’s a gorgeous sunny day in Florence, Italy!

Nanocurcumin?

This morning I came across a very interesting bit of news. A group of researchers from the Johns Hopkins University School of Medicine and the University of Delhi have created a nano-encapsulated form of curcumin Γ’β€šΒ¬”nanocurcumin! Γ’β€šΒ¬”which can be readily dispersed in aqueous media. This might overcome the problem of curcumin’s poor systemic bioavailability. It has already been tested in vitro on pancreatic cancer cells and has showed the same degree of effectiveness as regular curcumin, such as inhibition of NF-kB and downregulation of IL-6. Indeed, according to preliminary tests, pancreatic cancer cells lapped up this new form of curcumin more eagerly than regular curcumin. Nanocurcumin was also given to mice, and no ill effects were reported. See http://tinyurl.com/3x23gk for more information. Good news!

April Flu

I must have picked up a stupid little flu bug at my doctor’s office last week. So I won’t be posting for a few days, but do stay tuned, because this has given me an incentive to finish my post on GERMS! πŸ˜‰

Fractured English

Discovering that laughter helps boost the immune system and get our natural killer cells in motion has meant that I have been spending some time looking through the funny books that I have in my library. Has anybody read Richard Lederer’s “Anguished English” series? Well, if not, then off you go to the library or bookstore to get yourself a copy. You won’t regret it. I was just skimming through Lederer’s Fractured English, when I came upon the chapter devoted to English abroad. Since I used to translate from Italian to English and vice versa (still do, on occasion), I picked an example Lederer took from the brochure of an Italian hotel in the Dolomites area: Standing among savage scenery, the hotel offers stupendous revelations. There is a French widow in every room. We can offer you a commodious chamber, with balcony imminent to a romantic gorge. We hope you want to drop in. In the close village you can buy jolly memorials for when you pass away.

I always read hotel room instructions. I found a brilliant one in a hotel in Milan: in case of fire, please warm the manager. πŸ™‚

Why is Curcumin so Effective?

A friend (thank you!) sent me the link to a very interesting article which may explain why curcumin is effective against so many different types of cancer. You can read the article at: http://tinyurl.com/2rtvha. The study cited in the article was published in Cancer Research in March 2007. I looked up the abstract (http://tinyurl.com/2k99mm), which shows that curcumin inhibits the activity of an oncogene (or oncoprotein) known as MDM2. The researchers conclude that the Down-regulation of the MDM2 oncogene by curcumin is a novel mechanism of action that may be essential for its chemopreventive and chemotherapeutic effects. Why is this oncogene so important and what does it do? It binds to p53, which is a tumour suppressor protein, and inhibits its anti-tumour activity. Not good! Since the researchers used human prostate cancer cells, my job was to find out if there is MDM2 activity in MM, too. And there is! A study co-authored by Kenneth Anderson (http://tinyurl.com/345dm5) shows that the overexpression of MDM2 is involved in both growth and survival of MM cells. Therefore, the discovery that curcumin blocks the overexpression of MDM2 is extremely significant for MM and any other cancer where this process occurs. Well, how about that!

Watch Out! Laughter could be Dangerous to MM

Very true, it’s no laughing matter to have cancer. However, I think that humour can be found in almost any situation, yes, even cancer. Laughter, by the way, isn’t just a way to relieve stress and make you feel good. I recently discovered that it can increase the activity of our natural killer cells. When we laugh, we apparently are raising our immunoglobulin levels. According to a Mayo Clinic article, laughter has both short-term and long-term benefits. Short-term effects: it can stimulate our organs and activate our stress response. The long-term effects are even more significant: laughter can boost our immune system and relieve pain: http://tinyurl.com/ytxz4w In fact, concerning pain, I used my quirky sense of humour while a nervous intern with trembling hands was performing a bone marrow biopsy on me in 2005. In the middle of this not-very-hilarious procedure, I started thinking about writing a funny story about it, and that got me through the pain.

An article titled Laughter is the best medicine (which I was unfortunately not able to read online but was quoted at http://tinyurl.com/2vfg2z) provides a detailed description of what laughter does to our immune system: the initiation of the spontaneous blastogenesis of lymphocytes, increased numbers and activity of natural killer cells, and increased numbers of cytotoxic and helper T cells, as well as B cells. Natural killer cells are lymphocytes that engage in cytolytic activity against tumor cells, and B and T cells are essential to the immune response. Studies have shown that levels of salivary IgA, an antibody that helps fight upper respiratory disease, were elevated after the subjects had watched a humorous film. Humor and laughter also raise levels of the antibodies IgM and IgG, and of complement C3, all of which enhance the inflammation, chemotaxis, and lysis of target cells. Laughter increases levels of interferon gamma, which inhibits virus replication, promotes antigen processing, and activates macrophages. Thus, an immune system that has been weakened by disease and its treatment, and burdened with adverse emotions, may be somewhat renewed in laughter. (from Patillo and Itano, 2001) This is confirmed by the results of a study carried out at the Indiana State University Sycamore Nursing Center, where 33 healthy women were put into two groups. The treatment group watched a funny video, the control group a tourism video. The blood of both groups was tested before and after the viewings. The funny video women had much higher levels of natural killer cell levels compared to the tourist video women: http://tinyurl.com/2jdey3

A friend recently posted a USA Today article on the MMA listserv (a great resource for us MMers, by the way, so please join, if you haven’t already. See the link on this page), concerning sense of humour and its healthful effects. According to Dr. Svebak’s study, cancer patients who had a great sense of humour were 70% more likely to survive compared to those who had a poor sense of humour, and this had nothing to do with their cancer prognosis: http://tinyurl.com/yquwha That’s a HUGE percentage. Of course, a lot depends on what type of cancer you have, what stage you are in, etc.

On the IMF website, I read the story of a prostate cancer patient, a comedian, and his experience with laughter and cancer. What he wrote exemplifies how I feel about MM. It’s a good, well-written account, so I encourage you to read it at: http://tinyurl.com/24lecv An excerpt: In assessing all the ways I could’ve responded to my diagnosis, surgeries and chemo – laughter was the only one that made sense. I could have raged. I could have kept to myself. I could have felt cheated and abused by life. I could have felt everything from depression to cynicism. But laughter was the only response that, as I used it, helped me grow. Plus there was a byproduct to sharing laughter. While loosening up my body, easing the fears of others and building communication, it provided the most needful tool for fighting any trial in life – a positive attitude. The other reactions; anger, depression, suppression, denial, took a little piece of me with them. Each made me feel just a little less human. Laughter made me more open to ideas, more inviting to others, and even a little stronger inside. It proved to me that, even as my body was devastated and my spirit challenged, I was still a vital human. Indeed! And let’s not forget Art Buchwald and Norman Cousins, who, in spite of very poor prognoses, lived longer than expected thanks to you guessed it laughter.

Laughter won’t cure MM, of course, but it can provide us with another healing tool. My feeling is that we should attack MM on as many fronts as possible, and besides, WHO doesn’t love a good laugh?

This provides the reasoning behind the creation of a Humour Page. So, if you have anything funny to send to me, please do so, and I will add it to my blog. For starters, have a look at this hilarious (I think) YouTube video, titled Medieval Help Desk : http://tinyurl.com/2khqns Cat lovers, please check out Nora, the piano-playing cat, on YouTube. And don’t forget to follow The Adventures of Cancer Girl (see link). And remember: a laugh a day may keep MM at bay!

It’s Official: No Bone Lesions

My GP is on a well-deserved holiday, so just a couple of hours ago I was seen by his substitute, a very nice peppy young doctor whose mother, coincidentally, has MM. She confirmed that I have no bone lesions, and told me that the arthritic thingies that were written on the report simply mean that I am getting older (I hadn’t noticed). Nothing to worry about, she reported cheerfully, and certainly nothing connected to MM. Sweet music to my ears. She added that it looks as though I have bad posture (I agreed), and advised me to see a posture-doctor (I am sure there is a better medical term for that). She also told me that my big heart and elongated aorta are nothing to be concerned about. Super.