Remember the post I wrote back in January on a Spanish study concerning “high risk” smoldering myeloma patients? (I use quotation marks because the “high-risk” criteria were established by the study authors themselves…not by an independent group of myeloma specialists…as far as I can tell, anyway.) If this study doesn’t ring a bell, click here to read about it: http://margaret.healthblogs.org/2010/01/20/a-high-risk-smm-study-presented-at-ash-2009/

Relevant to today’s topic: in January, I found out that 9 of the 23 study authors are closely connected to Celgene, the makers of lenalidomide; indeed, two of the authors were Celgene EMPLOYEES (hello???)…these titbits made me suspicious, to put it mildly…anyway, I made my position clear in my post…no need to vent here, too…

Ah, before I continue: out of curiosity, just now I checked the Clinical Trials website and, yes, the Spanish study is still recruiting participants…(I am sure you can imagine what I think about that…but I prefer not to comment…oh okay, just one teeny tiny growl: grrrr…!).

And now we get to the point of this post. Today I feel vindicated…you see, I just finished reading a Science Daily article on how pharmaceutical companies influence and manipulate clinical trials: http://tinyurl.com/355lqwk Bloody hell!!! For more information, here is the link to the original article, printed in “Deutsches Aerzteblatt International”: http://tinyurl.com/2bw2xr6

This bit of news really came as no surprise to me (remember Vioxx?)…but I admit, it is very very frustrating. I mean…

…whom can we trust? 

Saturday was our 11th wedding anniversary (hehe, I just spelled that wrong. I spelled it “weeding anniversary,” just as I did earlier this morning in a message to a friend…LOL!!!). Since it was a nice clear day, Stefano and I decided t0 have lunch in town. Note: we ate quite a lot…this bit of information is relevant, please bear with me…

Then, as we were lazily strolling back toward the Duomo, Florence’s lovely cathedral topped by Brunelleschi’s famous cupola = dome (see: http://en.wikipedia.org/wiki/Florence_Cathedral), Stefano announced (casual tone of voice): “I just had an idea!”

“Oh nooo, what?,” I replied, glancing at him…I had seen that Stefano “look” many times before, and it means trouble. “Well, why don’t we climb to the top of the Duomo’s cupola?,” he asked, grinning… 

“HAVE YOU BLOODY LOST YOUR MIND?!!!,” I almost shrieked, “we have JUST finished eating a huge meal! We will have a heart attack and die (for my Italian blog readers: “ma che se’ impazzito???…Ci verrà sicuramente una congestione di quelle terrificanti!!!”)!!!!” “Awww, c’mon, we will climb up slowly, it will be fun…I haven’t been up there in years…” he coaxed. “Neither have I…but…” I looked up at the cupola, pondering the matter. Then Nancy popped into my mind…oh how she would have loved to view Florence from above…so I answered, “okay, I will make the climb for Nancy…”

We got in line…quite a wait, considering that it is only May (= not high season, that is)…and then we began our climb. 463 steps…some of which are quite steep, particularly toward the end. I don’t remember how long it took us to reach the top and step out onto the small circular marble terrace that you can see in a couple of my photos…certainly a half hour, which included a few stops to catch our breath and rest our pounding hearts…and also a stop to admire the inside of the dome. Yes, at one point, when you are convinced that you cannot possibly climb another step or your heart will burst (thumpety thump thump!), you reach a landing leading to a small door…and you step out onto a very narrow shelf that offers a spectacular, close-up view of the frescos painted on the dome ceiling (see photo, which gives an idea of what we saw…)…breathtaking!

At that point, you are more or less two-thirds of the way up. Puff puff. You continue in single file (yes, it’s narrow!). More steps, heart pounding harder. Ah, that reminds me. At the ticket booth there is a sign warning people with heart trouble NOT to attempt the climb. No kidding…

At one point I came upon a Spanish woman who looked terribly upset. She was panting, too. I stopped and looked at her sympathetically, so she told me, in Spanish, “I am not having trouble with all these steps, but I am beginning to suffer from claustrophobia…it’s so airless in here.” I uttered a few reassuring words to her (yes, in Spanish)…she calmed down, and we continued our ascent.

Well, when you step out onto the top terrace…aaaahhhh, the view just takes your breath away, and you forget about all those steps…the city of Florence is so amazingly gorgeous. Those who live here all the time tend to forget how lovely this city is, I think…I know that I do…

I read the news about the SRT501 (a special high-dose formulation of resveratrol; for general info on resveratrol, see: http://en.wikipedia.org/wiki/Resveratrol) clinical trial suspension on the Myeloma Beacon a few days ago. Today we have a few more, rather scary, I must say!, details (see: http://tinyurl.com/39j8buw).

My first impression, as I have already written on three (!) Facebook pages (1. my personal Wall AND 2. my blog’s FB page AND 3. the new multiple myeloma support group’s FB Wall), is that this goes to show that too much of a (possibly) good thing may not be such a…good thing!

And this is precisely why I always stick to the recommended dose of any new supplement that I decide to try. Indeed, I usually start out by taking less than the recommended dose (as I did back in January 2006 with curcumin, after all). For example, right now I am testing Reishi (scientific name: Ganoderma lucidum), which seizes myeloma cells by the neck and squeezes the life out of ’em…sorry, got a bit carried away there…Anyway, I have been taking one Reishi extract capsule, not two (two capsules=recommended daily serving), just to be on the safe side. So far, so good. Next week I will go up to the (recommended) two-capsule dose…then, blood tests in June.

And, I would like to add, the “too much of a good thing might not be so good” theory is also why I will never ever take more than eight grams of curcumin…

I would also like to note that my friend Sherlock and I tested resveratrol a couple of years ago (see my July 2008 results)…and even though we remained stable, our MM markers went up a wee bit, so I was very disappointed and will almost certainly NOT test this substance again. Oh, another thing: my cholesterol went UP with resveratrol, not down as expected. Weird.

Hmmm, a question just popped into my mind: are any of you having good results from resveratrol? If so, please leave a comment on this post…thank you!

Oh, just a quick P.S. Today is our 11th wedding anniversary. Yes, Stefano and I got married on May 8th, 1999 (=the year I was diagnosed with MGUS, in fact), and we are still happily married. We are about to go into town to have lunch and enjoy this sunny day (finally, some sun! It has been raining almost non-stop in Firenze for the past several days!)…so I have to go get ready….Ciao, everyone, have a great weekend!!!

Buon anniversario, Ste, TVTTTB! 😀

This post is for Nancy, who really wanted to visit me in Florence but was unable to do so because of her declining health. In fact, from now on, I will dedicate all my Italian travel posts to her (in my mind, anyway!). Since I am not back to my usual cheery positive self and am still having a tough time reading studies and/or doing any serious writing, I decided to post a “fluff” piece…about the trip we took to the Po Delta last month.

Before leaving Florence, we checked the online weather forecast (usually quite reliable)…the weather in that area was supposed to be cloudy but not rainy. We hesitated…but decided to leave anyway. By then it was mid afternoon. We arrived in the town of Comacchio in the early evening. Everything went very smoothly–no traffic on the way…a lovely, clean, airy B&B with very welcoming hosts who had prepared a nice large room with a great view of the canal (see photo 1)…a very promising start to our weekend. Indeed, I was so happy with our B&B that upon our return to Florence I wrote a 5-star review for TripAdvisor. My first review ever…

To our dismay, the weather forecast had been wrong…cloudy, my foot! On Saturday morning, a steady pitter-patter interrupted our sleep. I opened the shutters: rain…rain…rain…aaagghhh! Our very helpful and kind B&B host saved the day by rescheduling our boat trip in the delta…according to the weather, er, forecast, the afternoon was supposed to be sunny, perfect for a birdwatching boat trip. Yup.

Hmmm, what to do in the meantime? Once again, our B&B host came to our rescue. Following his suggestion, we spent a good part of the morning in the Museum of the Roman ship, admiring the contents of an ancient Roman flat-bottomed ship, about 20 meters long, which was found during dredging operations in a canal on the outskirts of the town of Comacchio in 1980. A museum guide took us around the first-floor exhibit: mallets, an ax, nails, ink pots and even ropes, brooms and the ship’s huge iron anchor. The guide explained to us—the only visitors—how the ship had been found…what the cargo, found intact and incredibly well-preserved, had been…and why they couldn’t allow visitors to view the ship itself (=serious issues of preservation)…fascinating. She made the ship contents come alive…

She then let us go upstairs by ourselves to wander around the second floor exhibit. Here we saw shoes and clothing (=1^st century BC leather shoes, clothes and even an apron…!), fishing tools, cooking utensils and gambling games…plus six exquisite tiny votive temples made of lead and 102 lead ingots (extraordinary, simply extraordinary…), wine and oil amphorae and a collection of terracotta vases, containers, plates and whatnot…Anyway, in spite of our disappointment at not having viewed the actual ship, except in photos and a video, we were glad to have been to this museum (no photos allowed, by the way). For more info on the ship: http://tinyurl.com/3xoc3j3 

I would like to note that the rain, which was supposed to end by early afternoon, continued throughout the day. Oh well. We were not discouraged. Hah!

After lunch we boarded a boat together with a group of loud tourists who kept complaining, loudly, about everything…especially the rain, as though this were somehow the fault of the park employees…! Their silly annoying chatter drowned out the voice of the very nice and well-informed park guide who was trying to provide all sorts of titbits on the delta area, give some interesting historical titbits and also point out birds that he had spotted. Stefano and I sat as far away from the rude tourists as possible, which meant that we had no cover from the rain…that was okay, since now we are well-equipped for wet weather…but what “got us!” in the end was the unexpected cold. Freezing cold…in April? Hard to believe, but yes, as a result of this two-hour boat trip Stefano developed a terrible cold (whereas I, with my almost nonexistent immune system, didn’t even get a sniffle…curcumin, thank you yet again!).

We didn’t see many birds (because of the rain, of course)…but we did get a few good photos. I even managed to take a photo of a spoonbill (spatula), but it is so out of focus that I cannot bring myself to publish it. We spotted heaps of pink flamingos huddled together in the distance, several little egrets (garzette) and an oystercatcher (beccaccia di mare) as well as a few pheasants, lots of different kinds of ducks and about a million seagulls. We decided to return to the Po Delta in better weather…

Sunday was…sunny, so we decided to drive to Ravenna…the city of beautiful mosaics…this is a photo of the famous mosaic depicting doves drinking from a vessel in the Galla Placidia Mausoleum…and here is a bit more information on this lovely city: http://en.wikipedia.org/wiki/Ravenna

That’s it! Now we are saving up for our trip to the UK in late June/early July…can’t wait!

I no longer have a reason not to write that the myeloma friend that I mentioned in my previous post is also one of my favorite MM bloggers…Nancy, or “La Cootina” (see the link to her blog “Because I said so!” on the right-hand side of my blog). I just finished reading what her brother wrote on her blog…so the news is out…http://lacootina.blogspot.com/2010/05/updates-if-you-wish.html

Before deciding to stop blogging, she put me in touch with a couple of her best friends, a couple of…the “Hoodies.” We were in touch before and also after Nancy went into hospice…Anyway, without going into too many details, they were the ones who informed me that Nancy had died…on Thursday April 29th. Since then I have found it impossible to do any serious writing…or any research. Nancy’s death has been a big blow…indeed, I am even finding it difficult to write this short post…

I have decided not to write a tribute to Nancy. I am still too upset, truth be told, and words escape me…luckily for me, though, a fellow blogger/friend has just published a wonderful loving post about Nancy, and his words express exactly how I feel: http://goodbloodbadblood.wordpress.com/2010/05/03/for-the-love-of-nancy/ 

Ciao, Nancy.

The other day I received some very bad news about a friend…a myeloma friend. So I have not been doing any research…just don’t have it in me right now. “Death” is a word I rarely use…but when someone in the myeloma community dies, I always feel a sense of loss, even if I don’t know that…someone personally. In this case, though, a close correspondent of mine died, so the news hit me even harder, even though it was not entirely unexpected. In the past few days I have been going through a gamut of emotions, which have led me to consider writing a post on death (a big taboo!) and our fear of death…or hey, perhaps NOT! Ok, enough…

I have not been idle, though…indeed, far from it. Yesterday, e.g., Stefano and I did a lot of weeding in our back yard…which was beginning to look more like a jungle than anything else. We filled TWO HUGE bags…just with weeds…amazing. Anyway, there is nothing like physical activity to get your mind off…things…even sadness and grief…

On a lighter note, yesterday I was surprised to see how much our raspberry bush has grown. Just a few weeks ago, it looked like a few dead sticks stuck in the ground, but it has now taken over 80% of the yard, and it is covered with leaves and pretty little white flowers…AND with honeybees! A joyful sight indeed…I had planned to take a photo of it this morning, but it’s raining in Florence…uff.

This morning (and afternoon), I have decided to sit down and plan our end-of-June/early July holiday in the UK…and this evening I am going to play cards with my girlfriends.

So life goes on…and I will be back on track soon! The first thing on my blog “agenda” is to finish (and publish) my Comacchio/Po Delta post…then I will go back to my more serious myeloma research…