Smoldering now for 13 years…

November 30, 2011 / / 30 Comments

Today’s post provides an update to TAB’s 2009 report entitled “Smoldering Myeloma – 11 Year Case Study Using Supplements.” If you don’t remember this remarkable case, scroll down my Pages on the right where you will find my original post on TAB or just click on this link: http://goo.gl/agjyP.

After Julie’s and Darlene’s recent comments, I contacted TAB to see how he was doing. As you will soon read, he’s doing much more than fine….he’s doing super-duper-hunky-dory fine! 🙂 Quick reminder: TAB is now 70 years old and has IgA lambda smoldering myeloma. In his message, he told me that he likes to keep busy, so he plays golf during the summer and restores pianos during the winter. How about that!!! What a guy…what a guy… 🙂

Anyway, he sent me a fabulous update, which included a series of gorgeous graphs (I wish I were that talented!!!) showing that his IgA is on a downward trend (good!), whereas his other Igs are on an upward one (also good!).

Here are TAB’s November 27 2011 comments:

I have been smoldering for 13 years.
I remain asymptomatic with no C. R. A. B. symptoms. That is: No elevated Calcium, No Renal failure, No Anemia and No Bone Lesions.
The latest IgA value of 3178 mg/dl is the lowest it has ever been since diagnosis.
I remain on my daily supplements of Inositol, IP6, Selenium, Vitamin C and D, Trans Resveratrol, Curcumin plus a multivitamin.
I take one half of the IP6 /Inositol first thing in the morning on an empty stomach and the remaining half before bed.
I take the curcumin all at once, usually with a meal that contains some fat or oil.
The other supplements I spread out over the day. Supplement cost is $1.44 per day.
The MM has by no means been eradicated, but I have enjoyed a very homeostatic control of the markers with no symptoms thus far.
These supplements may or may not work for others as they apparently do for me. I have been lucky to have had the time to see results which in some cases took years to manifest.
I eat a typical American, somewhat well balanced diet, but nothing special. I enjoy golfing in the summer and have a BMI at the upper end of normal.
No problems to report.

He takes the following supplements:

-Vitamin C (Active C 500 Plus): 500 mg, 1 cap/day. Source: Vitamin Shoppe.

-Selenium: 200 mcg, 1 cap/day. Source: Vitamin Shoppe.

-Inositol: 650 mg, 2 caps/day. Source: Swanson Vitamins

-IP6: 500 mg, 6 caps/day. Swanson Vitamins

-Vitamin D: 1000 IU, 1 cap/day. Vitamin Shoppe

-Multivitamin

-Resveratrol Synergistic Formula: 37.5 mg (trans res), 1 cap/day. Source: Vitamin Shoppe

-Trans Resveratrol Powder (98% trans-res), 100 mg, 1 cap/day. Source: Kingherbs

-Doctor’s Best Curcumin C3 Complex, 500 mg caps, 3 caps/day. Source: Swanson Vitamins

I thought it would be helpful for me to include the “source” information, since so many of you ask me where I get my supplements. I have never used the Vitamin Shoppe or Swanson but will check them both out at some point. For now, I don’t need any more supplements.

Quick note: while I was in the States in September, I remember receiving at least two requests for TAB’s 2009 report. At the time, however, I did not have access to my files. And, unfortunately!, I didn’t make a note of these requests, so I don’t remember WHO asked me for a copy of the report. If you are reading this update, please get in touch with me again. I will forward it to you. With apologies!

Horror, absolute horror…AND the evils of aspartame and other additives…

November 28, 2011 / / 5 Comments

I’d originally planned to do some myeloma-related research and writing this morning (finally, a bit of free time…that is, I had work to do, but I could take breaks, too), but that just didn’t happen. You see, a dear friend of mine, PK, sent me the link to a story that chilled me to the bone and pushed me into action: a few days ago, a group of hunters in northern Italy, near the city of Brescia, shot and killed thousands of migratory birds (including protected species) flying through “one of the most important migration corridors in the Southern Alps.” That is the San Zeno alpine pass, or Colle San Zeno, as it is known in Italian.

You can read the article in English: http://goo.gl/H9Kkw and in Italian: http://goo.gl/PvdAo. As many of you know, Stefano and I are enthusiastic birdwatchers, which made this story a million times worse, if possible. I was so horrified and shocked and appalled that I posted links on Facebook to articles both in English and Italian, together with my own horrified commentaries.

But the most important thing I did was to write immediately to the new Italian Minister of the Environment, Mr. Corrado Clini: clini.corrado@minambiente.it (please “copy and paste” to use this address) and to Mr. Edoardo Stoppa, who is an Italian animals activist and also reporter for the popular Italian TV program called “Striscia la Notizia”: Edoardo@edoardostoppa.com I asked them to ACT. Of course, it’s too late to save all those lovely songbirds etc., but we can and should do SOMETHING to stop the same sort of thing from happening in the future…

And that is why I am calling upon all of you…all the birdwatchers and animal rights activists and anyone who loves animals. Let’s inundate Mr. Clini’s office, in particular, with e-mails in Italian or English. Language and citizenship don’t matter. My hope is that his office will receive truckloads of outraged messages from all over the world…

I would like to live in a country that protects animals, not in one that shoots and kills them for no reason whatsoever. I would like to live in a country where birdwatchers and nature lovers are welcome to wander around without fear of being shot at by some dumb hunter. What happened a few days ago must not happen again.

Now for the second part of my post. This morning, thanks to a Facebook post by GM, I read about the very negative effects of aspartame, so I would like to warn everyone against using this dangerous sweetener in particular, or any other artificial crap, in general. According to the abstract (http://goo.gl/Pmm1j) , in addition to increasing the levels of IL-6, which is VERY bad news for a myeloma patient!, aspartame activates the process of angiogenesis, = one of myeloma’s best friends!, even at low doses. Aggggh!!!

While I’m at it, here is a list (not in any order of importance, by the way) of additives and yucky stuff that we should avoid like the plague. This list was compiled by Dr. James Berenson, who is, among other things, the Medical & Scientific Director as well as the Chief Executive Officer of Oncotherapeutics and the IMBCR, or Institute for Myeloma & Bone Cancer Research. The words in italics are direct quotes from Dr. Berenson’s Facebook page, which you can go and “like,” by the way, as I have:

An additive called MSG, a free glutamate amino acid, in the same group as hydrolyzed vegetable proteins, soy extracts, protein isolates and “natural flavorings.”
Food dyes: Yellow 5 (Tartrazine) used in gelatin desserts, candy and some baked goods is the 2nd most used food coloring. Known to trigger hyperactivity in adults and children and allergy-like symptoms in aspirin-sensitive people. Also thought to be carcinogenic.
The International Agency for Research on Cancer, division of the WHO concluded that caramel coloring, when produced with ammonia, contains contaminates that are “possibly carcinogenic to humans.”
Another hot topic for myeloma patients with neuropathy is eliminating or reducing nitrates in the diet. During the cooking process, especially under high heat, nitrites can combine with amines, naturally present in meat, to form N-nitroso compounds or Nitrosamines. These compounds have been shown to be carcinogenic.
Some science for you on the sweetener front. Although Sucralose is made from sugar, its chemical structure is significantly different. A molecule of the faux sweetener has the three chlorine atoms, whereas sugar has three pairs of oxygen and hydrogen atoms.
Look out for Acesulfame-K, Aspartame and Saccharin specifically. Each one of these have been tested positive for cancer in animals. Aha, our new angiogenic-activating enemy, Mr. Aspartame!
Last but not least, Dr. Berenson writes: Myeloma patients ask what to eat and not eat. My #1 tip. Get rid of the artificial sweetners!

Pterostilbene has potent anti-myeloma activity…

November 24, 2011 / / 4 Comments

While I was doing research for my bipterostilbene post (see my November 10^th post), I came across an earlier ASH report on pterostilbene, = without the prefix “bi,” which has a lot of healthful effects, including lowering your cholesterol and triglycerides.

The purpose of that particular study, presented at ASH in December 2009, was to see how effective it would be against multiple myeloma cells: http://goo.gl/w5zy0

As we can see from the abstract, pterostilbene inhibits HDAC, = histone deacetylase, which is a sort of large enzyme family that, because of its incrrrrrredibly bad behaviour, has become a target in myeloma research. If you check my February 9 2011 post titled “Future myeloma treatments,” e.g., you will find HDAC inhibitors listed at number 5. Ever heard of Vorinostat? Yep, that’s an HDAC inhibitor. As is curcumin, by the way…almost goes without sayin’! 😉

Back to our study. Pterostilbene by itself inhibited the growth of two myeloma cell lines and of fresh bone marrow tumor cells from MM patients by 50%. Fifty percent…wow. And it also KILLED myeloma cells in a concentration-dependent fashion. Sounds good to me!

Another finding: when pterostilbene was combined with melphalan and bortezomib, the results were even better than those achieved by the two drugs on their own. The obvious conclusion is that These studies establish pterostilbene as a novel HDACi with potent anti-MM activity alone and also show its ability to enhance the anti-MM effects of chemotherapeutic agents and bortezomib. “Potent,” huh???

This compound can be found in the skin of a variety of berries (blueberries!) and fruit. And in rhubarb, too, of course, as we’ve seen (see my recent bipterostilbene post). It’s a close relative of resveratrol but, from what I read, it may be even more powerful.

Here’s a study on pterostilbene and breast cancer: http://goo.gl/531yL In it we learn that this powerful antioxidant also has fungicidal and anti-diabetic activity AND lowers blood glucose. Indeed, it was found to be as strong as a drug called ciprofibrate, which is used to lower bad cholesterol and triglycerides. But pterostilbene doesn’t have any of the negative side effects of the drug (now, where have I heard thaaaat before?).

Another blog reader already takes pterostilbene as a supplement. I have too many things to try (things that have upcoming expiration dates, argh!) right now, so I won’t be testing this thing any time soon, but it’s certainly going on my list.

In the meantime, let’s help ourselves to an extra portion of that great-looking blueberry and rhubarb pie over there (hah, I wish!)! Though I suspect we’d probably have to eat not just one but a whole bunch of pies to get enough pterostilbene to do us any good, just as we’d have to gulp down a few truckloads of the spice turmeric to get enough of its active ingredient, curcumin, to make a difference.

Not really feasible, eh…Still, even a little bit is better than nothing… 🙂

It’s that time of year again…

November 20, 2011 / / 11 Comments

That would be flu vaccine time…

The issue has recently come up in the Italian MGUS Facebook group to which I belong. The group’s founder asked us if we were having a flu shot or not. To my surprise, ten out of fourteen people have thus far answered “no,” which is a rather interesting outcome…

I’ve undoubtedly written about this before, but repetitions have never killed anyone, so here goes: I had a flu shot every year for about four years after progressing from MGUS to SMM (in 2005). Years ago, when I asked for my hematologist’s advice, she said she didn’t think the vaccine would do me any good, but I could have it if I wanted it. My family doctor instead thought it would be a good idea. So I had it. And I still got the flu. Every year.

Sick and tired of getting the flu in spite of the vaccine, I decided NOT to get a flu shot last year. As expected, the flaming bothersome bug visited my home again. But I really wasn’t any sicker than when I’d had the vaccine. I mean, the vaccine didn’t attenuate my symptoms or help me recover more quickly.

So I’m not going to have the flu shot this year, either.

But there is more.

I recently watched an interview with Dr. James Berenson, a myeloma specialist whom I highly respect: http://goo.gl/eAfbA About 12 minutes into the interview, he says that flu vaccines probably don’t work very well in myeloma patients who have what we call immunoparesis who don’t make antibodies very well. My case, exactly. Dr. Berenson adds that these patients probably have pretty darned poor immune responses to immunizations. That being said, he adds, we still recommend it.

Now that last bit, “we still recommend it,” is really puzzling to me. I mean, if the flu vaccine doesn’t work very well for patients with lowered immunity, why is it still administered to them? The only answer that makes any sense is that the vaccine-producing drug companies have to sell their products no matter what…There may of course be another explanation…one that isn’t as exasperating. If there is, I’d like to read or hear it.

Another point: day before yesterday I read a rather alarming Science Daily article about a group of Dutch researchers who examined the effects of the flu vaccine on two groups of children, one with cystic fibrosis (= these kids were vaccinated every year) and one with no health issues (the healthy “control” group, which had never had the flu vaccine): http://goo.gl/nZ7eX (by the way, there is a link to the study abstract at the end of the SD article).

Results: In unvaccinated children, the investigators found that the number of virus-specific T cells rises with age, while such an increase was absent in children vaccinated annually. In fact, vaccination appeared to interfere with induction of such killer T cells…So, basically, as the unvaccinated kids got older, their levels of these virus-specific T cells (more specifically, virus-specific CD8+ T cells, as we learn from the abstract) kept increasing. However, and this is the scary part, the vaccine actually interfered with the formation of these killer cells in the vaccinated children, leaving them more exposed to new flu strains…

Further on, we can read that Annual flu vaccines are effective against seasonal flu, but could leave people more vulnerable to novel pandemics…Not good…not good at all. We don’t want to lower our immune response to any new flu strains, do we?

Of course, this is only ONE study. Of course, this study was carried out on children, not adults. But it has reinforced my own personal view that flu vaccines are not at all useful in my already immunosuppressed situation. On the contrary, they might be harmful.

I suppose the obvious conclusion is that I will never again have another flu shot. Of course, this is just my opinion, and I’m certainly not advising anyone to follow in my steps. Always ask your doctor/s about this sort of stuff. Oh, one more thing: if you do get the vaccine, avoid the type that contains thimerosal or/and squalene.

So, what am I going to do to help my immune system this winter?

Increase my intake of vitamin D. Incidentally, here is some information I found just the other day on vitamin D’s general health benefits (a Harvard’s School of Public Health web page): http://goo.gl/dTCA6
Be super extra amazingly careful about washing my hands and not touching my face at all when I’m out and about. That won’t be difficult, since I’m maniacally careful anyway.
Whenever a friend waves his/her fork or glass in my face and says “hey, taste this fabulous whateverthingamajig,” I’ll say, “no thanks.” I don’t care how healthy that friend looks. From now on, no…tastes! 🙂
Speaking of friends, if one of my card-playing buddies is not feeling well or has a cough, I won’t expose myself to her/his germs. Huge sacrifice, that one, since I love spending time with them…
Thanks to a tip from a blog reader, I’m already taking zinc, not around the time I take curcumin, though, to avoid any possible interferences.
Sleep sleep sleep. I haven’t been sleeping enough lately, mainly because of worrying about my new classes and trying to do too much in general. Yesterday I collapsed into bed and slept for a good part of the afternoon. So yes, I clearly need to modify my sleep patterns.
My own stress levels are ok, I think, but if yours are high, try to bring them down. Stress lowers your immune system defences…
Goes without saying: a good diet, with plenty of those cruciferous veggies, artichokes, celery, parsley, garlic, onions and so on. And drinking plenty of water.

I can’t think of anything else…let’s see…basic hygiene, getting plenty of rest, taking vitamin D in addition to the usual curcumin etc., eating well and drinking a lot of water. What have I missed?