Margaret's Corner

This morning I received a very cute cartoon from a blogging friend (thanks!) who told me that she had thought of me as soon as she had clapped eyes on it. It reminded her of the recent post I wrote on the refined fructose and pancreatic cancer cell study…

Incidentally, that study has given me a new pet peeve: high fructose corn syrup…and, really, any type of refined fructose. I was horrified, e.g., when I recently noticed that different brands of agave nectar are for sale in the health food store where I do a lot of my shopping here in Florence…uffaaa!!!

Anyway, I hope you will enjoy the comic strip, too. Here is the link: http://www.gocomics.com/garfield/?ref=ga_gce_b5 Oh, by the way, I assume that the strip gets changed every day…The one that my friend sent to me has today’s date, so please look for that one…Ciao!

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…

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!

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…

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