Monthly Archives: August 2010

Still MGUS…after more than 30 years…

When, in early 2006, I told my best friend that I had progressed from benign MGUS to the, er, less benign condition of SMM, or smoldering myeloma, she didn’t look shocked or tell me she was sorry or burst into tears (all of which I deeply appreciated!). It’s not that she didn’t care, of course. She is just a no-nonsense, positive-thinking person. And she almost immediately remarked, “You know, I think A. has something like that, too.” “Really?,” I answered, surprised.

And so we began chatting about A., who has been her closest friend since they were in the same class in high school…Well, it turned out that my best friend was right: A.was diagnosed with MGUS when…get ready for this!…when she was in her 20s. Since she is now in her mid 50s, that means that she has had MGUS for more than half her life…

This is actually my second post about A. My first post dates to 2007, when she swam across the Strait of Messina: http://margaret.healthblogs.org/2007/08/06/swimming-across-the-strait-of-messinawith-smm-an-inspiring-story/

There is more to this story…

A few years ago, A. had breast cancer and went through a number of chemo treatments, which didn’t, however, have any negative effect on her MGUS. Her numbers remained stable. And I am happy to report that I saw her test results last spring: they were excellent. In fact, her numbers place her in the MGUS, not SMM, category.

In case you are wondering, no, she still cannot interpret her own blood test results. She relies on her haematologist for that. As I said in 2007, some people are better off not knowing too much about…things…

But wait…why am I writing about A. again today? Well, mainly because every so often I receive private messages/blog contacts from people who have been recently diagnosed with MGUS and SMM and are scared of progressing some day to active myeloma. Well, to be honest, that nagging little thought is in the back of my mind, too. And sometimes, especially when I become aware of a new ache/pain, the notion that it might be caused by myeloma manages to push its way for a nanomoment to the front part of my brain. Then Reason and Optimism take over and push that notion back where it belongs…

That back-of-mind thought is why my research and my blog are so important to me. I receive many private (and public!) thank-yous and compliments, which are all very much appreciated…but the truth is that I do all this reading and research mainly because I am fighting for my own life. I am fighting to remain stable. And (why not admit to it?) perhaps I am fighting not to be scared…

Doctors tell us that there is nothing we can do. All we can do is “wait for the other shoe to drop.” I doubt they realize how disempowering that is…and how helpless and frightened and alone it makes us feel…

But hey, I am not going to sit back and just…wait. I am going to keep on learning as much as I can about this cancer. I am going to keep updated and test (on myself!) a few, scientifically proven, non-toxic substances, obtained only from reliable sources, of course…Oh dear, I’m so sorry…I digress, as usual! 😉

Another reason for today’s post is that I have had a few exchanges with a young woman who has recently been diagnosed with MGUS and is very VERY scared. She always gets severe panic attacks and even colic pains before going to the lab to have routine blood tests done. Oh, and sleepless nights, too. I have tried to be as reassuring as possible. But this morning I realized that, instead of reminding her of all the favourable statistics (= only a very small percentage of MGUS folks will progress to active myeloma, blablabla), perhaps the very best thing I could do for her and others would be to provide a few more details about A.

After all, A. is not a number. She is not a statistic. She is a real, living and verrry active, wonderful person. And she has become a dear friend of mine (one of my close, card-playing, laughing buddies, in fact). 

Still with MGUS.

After all these years…

A new study shows that EZH2 is bad both inside and outside a cancer cell…

Yesterday, as I was going through my Science Daily newsletters, I found an article on the effect that EZH2 has on ovarian cancer cells (do you remember the Polyhooligans? Yep, EZH2 is one of those pesky Polycomb repressor genes that I began calling “Polyhooligans.” To brush up on your PcGs, look over on the right and scroll down to my Page titled “Myeloma and Polycomb repressor genes”).

Well, it turns out that EZH2 is more of a hooligan than we thought: it helps the tumor-feeding process called angiogenesis. That means that it has an effect not only INSIDE but also OUTSIDE a cancer cell. The SD article can be read here: http://tinyurl.com/397klyp

Yes, EZH2 is a very VERY bad boy. If you let him inside your house, he will rip up the curtains in your living room and bedroom, gobble down your dinner (unless it’s curry-based…), smear your walls with dirt, throw smelly wet garbage all over the place, even inside the fridge…Well, okay, that is what we knew about EZH2 up to now.

But this new study tells us that EZH2 will not stop at trashing the inside of your house. No. He will trash the outside, too…by pushing the lawn mower all over your lovely flowers and healthful vegetables and spraying toxic pesticides in every direction.  😉 Okay, so I got a wee bit carried away, there. Point is: EZH2 is bad news! Advanced cancer patients with high levels of EZH2 fare worse than those with lower levels of this evil protein.

I have decided not to go overboard on this one. Translation: I won’t read the full study and bore you with another long post reinforcing how evil this protein is. There is no need for me to do that: the SD article is clear enough. In a nutshell, if you block EZH2, you can reduce the proliferation of cancer cells (in this case, ovarian cancer cells). In layman’s terms: if you tie up and gag EZH2, he won’t be able to trash inside or even outside your house anymore…

Those of us taking curcumin, fish oil and/or EGCG needn’t worry that much about having our, uhm…our house trashed. Those three substances, in fact, block EZH2 (see my late July/early August posts for more detailed information).

And that is a bit of welcome news for a lazy Sunday morning, I’d say!

Hey, there’s a cat in the tub!

Puzzola, my eldest kitty (nine years old), has always loved stuffing herself into small boxes, the smaller the better…or into laundry tubs…such as this one. She has never minded the, er, overhang.

This is a photo I took of her this morning. And it is for you, Beth! I hope this photo will cheer you up for a second or two…

Upcoming myeloma patient and family seminar in Pisa, Italy

This morning I received a message from Vittorio, the president of the Associazione Schirinzi A. Mario Onlus, reminding me that there is going to be a myeloma patient and family seminar in Pisa on September 12th. I will not be attending, since I will be in the U.S. at that time (a quick two-week trip to Massachusetts, for family reasons). I would like, however, to attend the seminar that will be held in Bologna in mid October (http://tinyurl.com/2vgnqfl). If possible. 

The Pisa program has not yet been listed on the IMF website, but Vittorio sent it to me, so here goes (in Italian, obviously):

3° Seminario Mieloma Multiplo Pisa 12 settembre 2010

9:30 Apertura: Susie Novis, Presidente International Myeloma Foundation: Introduzione IMF. Vittorio Schirinzi, Presidente Associazione Schirinzi A. Mario Onlus: Presentazione Associazione e Seminario. Prof. Pierluigi Rossi Ferrini, Presidente Onorario AIL Firenze: Il ruolo del volontariato e presentazione AIL. Moderatore: Prof. Pierluigi Rossi Ferrini

10:00 Che cosa è il mieloma multiplo. Prof. Mario Petrini, Primario Unità di Ematologia, Ospedale Santa Chiara, Pisa

10:30 Il percorso di cura del mieloma multiplo: il trapianto autologo, il trapianto allogenico, la terapia farmacologia. Prof. Alberto Bosi, Primario Unità di Ematologia Ospedale Careggi, Firenze

11:15 La gestione degli effetti collaterali nella cura del mieloma multiplo con farmaci specifici. Dr. Enrico Orciuolo, Ospedale Santa Chiara, Pisa

12:00 La gestione della cronicizzazione della malattia. Dr. Gabriele Buda, Ospedale Santa Chiara, Pisa

12:45 Il ruolo della vertebroplastica nella cura del mieloma. Dr. Paolo Carpeggiani, Ausl, Modena 

13:15-14:15 Pausa Pranzo

14:15 Terapie innovative nella cura del mieloma multiplo. Dr. Brian Durie, Cedars Sinai Hospital, Los Angeles U.S.A.

15:00 L’aspetto psicologico nella diagnosi e nella cura del mieloma. Dr. Ciro Conversano, Ospedale Santa Chiara, Pisa

15:45 Sessione domande ai relatori

16:45 Chiusura seminario

Vitamin D influences more than 200 genes…

One of my happiest research moments is when I find free, fully available studies online. Today I had two such moments. I am still working on a post based on the first study; in the meantime, here is a link to the second one: http://tinyurl.com/32schog (it will take a few seconds to load, so please be patient…). If you find the language a bit overwhelming (I haven’t read the study yet, but a glance sufficed…!), then here is the link to a much simpler text, that is, a Science Daily article on the topic at hand: http://tinyurl.com/2cwv9fy

I did a textual search for “myeloma,” but found nothing. This is very odd, since CLL and AML are both mentioned AND there are studies showing that myeloma patients with vitamin D deficiency have worse outcomes (see my Page on this topic: http://margaret.healthblogs.org/life-with-myeloma/what-is-multiple-myeloma/myeloma-and-vitamin-d/). I might try writing to the authors, actually.

Okay, I must get back to my studies now…or, on second thought, perhaps I should do some ironing (my pile of ironing has almost reached the study ceiling…)? Hmmm…

Pancreatic cancer cells slurp up refined fructose…

What was supposed to be a quick and easy post turned into a big hairy monster. It all began a few weeks ago (gollywolly, time flies, doesn’t it??? Well, it’s been a busy summer…), when a blog reader/Facebook friend told our Facebook multiple myeloma support group about a rather alarming article (see: http://tinyurl.com/2wrdqqc). In a nutshell, a newly published study shows for the first time that, while pancreatic cancer cells greedily gobble up glucose, they use fructose to divide and proliferate…Eeeek! Fructose? Wait a second. Isn’t that the sugar contained in fruit?!!!

And so my quest began. First, though, I wanted to take a closer look at fructose, about which I knew very little, to be honest. Well, let me tell you, doing research on fructose was like unlocking Pandora’s box…her fructose box (!), that is. Too much information! I became very discouraged, which is partly why it has taken me so long to publish this post…Anyway, here is a summary of what I found:

  1. Many websites declare that fructose is not a natural sugar contained in fruit, as we all have been led to believe!; but is entirely man-made. The sugar contained in fruit is instead, apparently, called “levulose.”  
  2. Others don’t even mention levulose…
  3. Most, however, state that levulose is merely a synonym of fructose…
  4. Not content with doing a search in only one language, I also looked at a few Italian websites, finding out that “levulosio” (= the Italian word for “levulose”) is simply the ancient word for “fructose” and is no longer used. Not very helpful. Uffa.

Well, with the levulose-fructose issue unresolved, I took a deeeeep breath and began reading the full pancreatic cancer study, which a lovely blog reader (thanks!) sent to me. The more I read, the more the distinction between fructose and levulose (if there is any!) became totally irrelevant. Phew. Relief! This saga, by the way, has taught me a good lesson: read the full study FIRST!

You see, there is no mention of the word “fruit” in the full study. No apples. No pears. No gooseberries. No kiwi. What instead is mentioned frequently is “refined fructose,” and refined fructose, I can assure you, does not grow on a tree or on a bush. It is the end result of a chemical process. So there is no need to panic and toss all our fruit into the rubbish bin.

Let’s see. From what I read, REFINED fructose has been stripped of all its nutrients. Nothing natural in it. But worse, it can cause all sorts of, er, not-so-lovely things, such as high triglycerides, metabolic dysfunctions, liver disease and obesity. At the top of the “refined fructose” list are agave nectar or syrup (up to 92% refined fructose when heated!) and high-fructose corn syrup (= HFCS). I was surprised to note that HFCS can be found in almost everything, not just in soft drinks but in yoghurt, industrial bread, cookies, salad dressings and ketchup. It’s really hard to avoid…(see my P.S. at the bottom of this post, though).

Okay, my long and rather fruity introduction to the fructose study has gone on long enough. Let’s take a look at the full study. First, here is the link to the abstract: http://tinyurl.com/38f2oxm In the full study I read that Increased refined fructose consumption, in particular, has been highlighted as conferring greater pancreatic cancer risk than other sugars in several recent large epidemiologic studies. Relax, Margaret: refined fructose, not peaches and blueberries…

And, a bit further on: We recently observed that mean circulating fasting fructose levels were 2.5 times higher in pancreatic cancer patients in comparison with fasting serum fructose levels in healthy subjects who were in the 0.5 to 1.0 mmol/L range. The role, if any, of fructose as a substrate in cancer is poorly understood. The present study shows that pancreatic cancer cells grow in a range of fructose concentrations that are attainable with the current Western diet and at equivalent rates to glucose. The researchers also found that pancreatic cells use fructose and glucose in different ways, as we will see in a minute. So let’s plod on…

Results: the researchers measured the in vitro proliferation rates of several pancreatic cancer lines immersed in a different fructose and glucose concentrations and compared them to glucose-bathed and high-glucose-bathed cells. They found that the pancreatic cancer cells grew in both glucose and fructose…in the same concentrations. And they also found that normal pancreatic cells grew in both glucose and fructose.

But then they checked the cancer proliferation rates and discovered that, even though pancreatic cancer cells prefer dining on glucose, they can also uptake and use fructose for growth. In order to understand this mechanism, the researchers examined how cancer cells metabolize the two sugars. Skipping the technical bits, flip flip flip, it turns out that, unlike normal pancreatic cells, the cancer cells metabolized fructose at 250% higher rates than glucose. Holy cats!

They also found that, after gorging themselves on refined fructose, the pancreatic cancer cells produced more uric acid, a finding that further supports the researchers’ theory. Now, this part gave me a lot of food for thought. You see, one of my routine tests is uric acid (mine has always been way within the normal range). It is one of the first results that my haematologist checks carefully. She believes that it is a VERY important test for myeloma. Well, this pancreatic cancer study makes me wonder if refined fructose is bad for myeloma folks, too. In the absence of a myeloma-refined fructose study, I will simply assume that it is (…bad for us, I mean…). I am sooo relieved that I gave up soft drinks a few years ago. I don’t touch the stuff now. And I have never even tasted agave nectar.

Now, let’s have a look at the Discussion part. According to conventional wisdom, until now there has been no difference between glucose and fructose in terms of feeding cells and so forth. This study’s data, however, puts things in a new perspective: pancreatic cancer cells prefer to use fructose to proliferate. So there is a difference. For those who are more scientifically-minded: fructose potently induces TKT expression and activity to aid metabolism of fructose in the PPP.

The researchers conclude that fructose is a particularly significant dietary sugar component with important implications for patients with cancer, particularly given the significant dietary change that has occurred in human fructose consumption since the mid-20th century. Our findings provide important insights into recent epidemiologic studies that have identified refined fructose as an independent risk factor for pancreatic cancer, and identify fructose-mediated actions as a novel therapeutic cancer target.

So pancreatic cancer cells thrive on glucose (=ordinary sugar) BUT use refined fructose to divide and proliferate. This challenges the common wisdom that sugar is just…sugar.

On a practical level, what does this mean? Yes, here we are talking about pancreatic cancer cells, not myeloma ones. However, based on the above-mentioned uric acid titbit, I wonder if a myeloma-refined fructose study would churn out similar results. Impossible to say. In the meantime, however, it is probably a super good idea for us to cut down on all processed foods, soft drinks and sweeteners. You never know…

Hmmm, hey, do you want to bet that now the pharmaceutical companies are scrambling to find a drug or a molecule or a hoojamaflip that will stop pancreatic cancer cells from using refined fructose to reproduce? Hah! Mark my words…

By the way, since my next door neighbours are putting in a new bathroom on the other side of my study wall, I apologize for any possible repetitions in this post…But let me tell you: the drilling noise is deafening. In fact, at times I feel as though the masons are drilling holes right through my brain! 😡

P.S. Decline in the use of high-fructose corn syrup: http://tinyurl.com/38jv3ae 

P.P.S.S. Helpful website on triglycerides, fructose etc. http://tinyurl.com/59uosc

Green bananas…

I have been checking my blogging friend Lucie’s blog (http://greenbananascancerblog.blogspot.com/) every day, hoping for a bit of good news. Unfortunately, there has been none. And the dreaded day has finally come. She died in her sleep last night…Lucie had pancreatic cancer.

On Monday afternoon, after learning that she had taken a turn for the worse, I decided to sit down and read as many of her posts as I could. And, oh, I found some marvelous ones.

Here are a few links…naturellement, I chose a couple of the funny ones and a couple of the ones about curcumin…

Oh Lucie, I am going to miss you…My heart is heavy, but I am relieved that you went peacefully, surrounded by your loving family…

New Simon’s cat video…

Internet has been coming and going today. We are changing providers, which is not as simple as it may sound. As a result, I haven’t been able to do much research (but tomorrow is…another day!), so today I will simply post the link to the new Simon’s cat video, titled “Simon’s cat in the box”: http://tinyurl.com/28nf2sc Adorable. I lovvvvved it!

Oh, by the way, don’t forget to vote for the Myeloma Survivor race car design: http://tinyurl.com/27u2kk9. The word has indeed spread like wildfire, and today we are up to 616 votes (as of 8:24 PM, Italian time). Excellent.

Don’t forget that you can vote again and again and again…every 24 hours, that is. So, if 616 people vote again tomorrow, then again the day after, then…well, you get my point! So, click click click!

Racing to beat myeloma!

Thanks to a blog reader and to my blogging friend Beth (http://tinyurl.com/275cf5c), I found out that the International Myeloma Foundation has entered a Toyota racecar design in a contest called Sponsafier. The winning entry will be built as a full sized car, and your votes can help push myeloma awareness across the finish line.

You can vote for this car design every 24 hours (=not just once, that is). When I voted, just a little while ago, the Myeloma model had received only 203 votes. That’s terrible! 

So, c’mon, everyone, let’s get our friends, neighbors and family members to vote. Please post this link everywhere possible–your own blog, myeloma patient forums, Facebook, Twitter, MySpace, YourSpace, WhereverSpace, Whoevertwits and Whateverbook–in order to get as many votes out there as possible! Spread the word! Gee, we can do better than 203 votes!

Oh, I was getting so carried away that I almost forgot to post the link, which is:  http://tinyurl.com/27u2kk9

PLEASE VOTE!!! Click click click! :-)

Vitamin B3 and fungal infections…

I guess you could say that these are “Science Daily days.” During house cleaning breaks, in fact, instead of working on my drafts (!), I have been looking through some recent Science Daily issues and finding some really interesting reports. Since my time is limited these days, it is a huge relief to have SD do most of the work for me.

This SD article (http://tinyurl.com/33owjjm) reports on how vitamin B3 may be an excellent antifungal treatment. It reminded me of a very bad year (for me): 2005. That is when I found out that my MGUS had progressed to SMM, based on the results of a bone marrow biopsy I had in November: 50% neoplastic cells were found in my bone marrow, a percentage that in 2007, after one year on curcumin, had decreased to less than 40% (but, of course, myeloma cells tend to clump together; therefore, bone marrow biopsies, or BMBs, are not incredibly accurate or reliable tests…).

Anyway, my SMM diagnosis was the icing on the cake. The cake itself consisted of a series of recurrent infections that plagued me throughout 2005. Example: I kept having painful yeast infections…one after the other. At the time, I hadn’t made the connection between these chronic infections, myeloma and my impaired immune system. Duuuh…

Then, at some point after beginning the curcumin protocol, I noticed that the yeast infections had disappeared. Completely. Boyohboy, what a relief!!! And they have not returned, I am happy to say. (Now watch, I have hexed myself! Aaagh!) My experience seems to confirm lab tests showing that curcumin has strong antifungal activity…

Well, anyway, according to the recent University of Montreal study discussed in the SD article, so does vitamin B3. So if you are having trouble with this sort of infections, do go have a look at it…

Okay, I need to get off the computer and do some sorting/organizing…sigh…