Well, we stood our ground for 48 hours, which isn’t bad, all things considered. But last night we surrendered and took the bothersome Elizabethan collar off. Why? Because Priscilla had turned into a terrified tiny larva. She was so frightened of bumping into things that she refused to get off our bed, which meant that we had to carry her downstairs for meals and even to use the cat litter…by the way, she peed all over our feather duvet on Saturday. Lovely.

 

Carrying a kitty around sounds simple enough. But Priscilla is part tiger. Whenever we picked her up, she would growl and hiss, then hold on to our necks for dear life with her sharp little claws embedded in our flesh (OUCH!).

 

Then, yesterday afternoon, Stefano tried to pick her up to take the feline larva downstairs for a bite to eat, and she scratched his neck. Fiercely. Drew blood. A scene out of Rudi’s “how to give a pill” comment. I wonder if any of Stefano’s colleagues at work will make a smart aleck remark about those scratches today. Eh.

 

So yesterday evening we carefully checked out the spot on her tummy, and it looked okay. Concerned that we wouldn’t be able to pick up the ferocious beast anymore and that, as a result, she would starve to death, die of thirst AND pee all over our duvet (I am joking here, naturellement, we would never let that happen!), we decided to unhook her.

 

Funny thing is, even after being released from the torture device, she wouldn’t budge from our bed. We called and cooed to her, but she didn’t come down for dinner with the others. So I took a bowl of food upstairs and showed it to her at a distance (she was starving by then). Step by step, going backwards, I managed to coax her slowly downstairs. Once she realized that she wasn’t ramming into the furniture and walls anymore, she was fine.

 

She slept by my feet or perched precariously on my shoulder (…) all night and then, just before dawn, thrust her purring face into mine, demanding attention. Life seems to be back to normal…so I hope! I have to say that we have noticed her licking that pink hairless spot on her tummy (now that she can reach it…). Of course, we discourage that. But we aren’t with her all the time, of course…oh well.

 

At any rate, one thing is for sure: no more e-collar. Ever.

P.S. Our cats are housecats. So Priscilla’s alopecia was not caused by parasites or fleas. Just to make sure, though, our vet checked her over carefully on Friday…found nothing.

I was up for hours last night with my 4-year-old kitty, Priscilla. I am exhausted. So is she.

 

This is what happened: a couple of afternoons ago, Priscilla was sleeping on our bed with a couple of our other cats. As usual. When I walked into the room at one point, she turned over on her back and stretched out…and I stopped for a second to scratch her tummy. Almost immediately I noticed an area that had no hair on it. A hairless pink spot. YIKES! I called the vet immediately and made an appointment for the following day (=yesterday).

 

I will shorten this long story: the vet reassured us that she is healthy as can be and that what she has is probably something called psychogenic alopecia. This is an obsessive compulsive disorder, which has roots in anxiety, boredom or stress. I thought only people got OCD. Well, you always learn something new…  

  

Priscilla has always been a peculiar little cat–a bit wild but also very affectionate. Throughout the years, she has exhibited small signs of obsessive behaviour that I ascribed to her childhood traumas, about which I wrote a post some time ago. But alopecia? Stefano and I (and my parents, who have a huge soft spot for Priscilla) were completely taken aback. And no, we haven’t made any recent changes in the household, no new cats, blablabla. We simply can’t explain this… 

 

At any rate, the vet prescribed an Elizabethan collar (this horrible contraption prevents her from licking the sore spot on her tummy) and an antibiotic…now, have you ever given an antibiotic to a fierce tiger in the wild? Well, that’s what we are going to do in about a half hour. In fact, I asked the vet yesterday if I could wear the e-collar and take the antibiotic instead of Priscilla, but apparently it doesn’t work that way. Sigh.

 

The e-collar, as predicted, drove and drives her nuts. I have never seen a more upset cat in my life. By 5 am I had had enough. I just couldn’t bear to watch her dashing around the house, bumping into things, trembling, panting, trying to hide and so on…and almost took the bloody thing off. But no, the vet had told us to be strong. And so did my cousin, to whom I turned for help early this morning. (Like yours truly, he adores cats. Unlike yours truly, he has heaps of experience with pill-giving, e-collars and so on.)

 

So, okay, we are being strong. Not easy, I tell ya! But, after my restless night (I should note that while I was up and down the stairs following a very noisy and distraught Priscilla, Stefano was fast asleep…no comment…!), in mid morning, when Priscilla calmed down a bit and I finally went back to bed, Stefano managed to give her a bite to eat and some water. Such a relief.

Anyway, if I don’t post much in the next few days or answer your e-mails, at least you know that I am either trying to console my unhappy cat or giving her a pill. Ma porca miseria, questa non ci voleva!

Update: I had no problem giving Priscilla the antibiotic just now. I crunched it up and mixed it with a dab of the fur ball remover gunk that all my cats adore (with the exception of Puzzola, our eldest). She licked my finger clean. Phew!

A blog reader/friend, thanks!, sent this list of statements made by soccer/football (depending on the country you live in) players. I don’t know if they are true or not (no mention of them on Snopes). It doesn’t matter, I suppose. They are certainly plausible and made me giggle more than once….even though I have no idea who most of these players are–the only names I recognize are Beckham and Thierry. Anyway, enjoy! (I couldn’t help adding a few comments…in brackets.)

My parents have always been there for me, ever since I was about 7. David Beckham

I would not be bothered if we lost every game as long as we won the league. Mark Viduka

Alex Ferguson is the best manager I’ve ever had at this level. Well, he’s the only manager I’ve actually had at this level. But he’s the best manager I’ve ever had. David Beckham (glad he cleared that up for us…)

If you don’t believe you can win, there is no point in getting out of bed at the end of the day. Neville Southall (I guess not!)

I’ve had 14 bookings this season – 8 of which were my fault, but 7 of which were disputable. Paul Gascoigne

I’ve never wanted to leave. I’m here for the rest of my life, and hopefully after that as well. Alan Shearer (positive thinking, there you go!)

I’d like to play for an Italian club, like Barcelona. Mark Draper (uhm…er…well…)

You’ve got to believe that you’re going to win, and I believe we’ll win the World Cup until the final whistle blows and we’re knocked out. Peter Shilton

I faxed a transfer request to the club at the beginning of the week, but let me state that I don’t want to leave Leicester. Stan Collymore

I was watching the Blackburn game on TV on Sunday when it flashed on the screen that George (Ndah) had scored in the first minute at Birmingham. My first reaction was to ring him up. Then I remembered he was out there playing. Ade Akinbiyi

Without being too harsh on David Beckham, he cost us the match. Ian Wright

I’m as happy as I can be – but I have been happier. Ugo Ehiogu (I like this guy…)

Leeds is a great club and it’s been my home for years, even though I live in Middlesbrough. Jonathan Woodgate

I can see the carrot at the end of the tunnel. Stuart Pearce (my favorite…)

I took a whack on my left ankle, but something told me it was my right. Lee Hendrie

I couldn’t settle in Italy – it was like living in a foreign country. Ian Rush (LOL! ROFWL! On the par with the carrot tunnel remark)

Germany are a very difficult team to play…they had 11 internationals out there today. Steve Lomas

I always used to put my right boot on first, and then obviously my right sock. Barry Venison

I definitely want Brooklyn to be christened, but I don’t know into what religion yet. David Beckham

The Brazilians were South American, and the Ukrainians will be more European. Phil Neville

All that remains is for a few dots and commas to be crossed.  Mitchell Thomas

One accusation you can’t throw at me is that I’ve always done my best. Alan Shearer

I’d rather play in front of a full house than an empty crowd. Johnny Giles

Sometimes in football you have to score goals. Thierry Henry (it’s good to know the rules…)

A blog reader and myeloma list patient, whom I will call TAB from now on, contacted me recently, telling me that he had written a report about his case of smoldering myeloma. He asked if I could add the report to my blog. Unfortunately, I cannot. The least I can do, though, is write a “summarizing” post about it.

 

What I really liked about TAB’s report is that it is set up much like a clinical case study. It begins with the following question: “Are supplements an alternative to conventional treatment of smoldering myeloma?” TAB’s answer is yes…that, based on his experience, certain supplements can slow down or reverse the progression of smoldering myeloma. Okay, let’s dive right in…

 

TAB is 67 years old and has been smoldering for the past 11 years. Eleven years…impressive, huh? Yes, I was impressed (and encouraged!), too. Based on the Mayo Clinic report (see my April 16 post), he now has a 67% risk of progressing to active myeloma. But his data seems to indicate that the disease is not progressing and it may actually be receding. Fabulous. This is the kind of news that I love to read! And no, he is not a curcumin-taker. Let’s keep going…

 

TAB was diagnosed in 1998 with asymptomatic smoldering/indolent IgA  lambda multiple myeloma. The diagnosis was triggered by a borderline total serum protein (8.7 g/dl (6 to 8.3 g/dl) on routine testing.  Further testing revealed an IgA level of  3220 mg/dl (81 to 463 mg/dl).  Serum protein electrophoresis revealed an M spike in the beta region of 2.5 g/dl. A bone marrow biopsy showed 40% plasma cell involvement.  A bone marrow biopsy 3 years later showed 27% plasma cells. A full body bone survey was negative. An oncologist advised him to join a study utilizing high-dose chemotherapy followed by an autologous stem cell transplant. He declined this and decided on no treatment. He decided instead to go for what we call “watchful waiting.”

 

Then, In January of 2000 after about two years of watching the trend line of critical data slowly creep in the wrong direction, I began the following supplements:

·        IP6 Inositol  1.5 g/day

·        Inositol  2 g/day

·        Selenium  200 mcg/day

·        Vitamin C  500 mg/day

·        Vitamin D  1000 iu/day

·        A Multivitamin/Multimineral  per day

 

He has made dose adjustments over the years, but these (on the above list) are the only supplements he has been taking.

 

Lo and behold, before a year had passed, his myeloma markers began improving: his IgA and 24-hour urine protein have been decreasing in the past 5 years, and his B2M stopped increasing and has remained stable. His hematocrit had been decreasing in his pre-supplement period, then levelled off and is now increasing. Excellent.

 

At the end of the report, TAB asks the obvious question: Did  the supplements cause a decrease in progression or would the results have been the same without the supplements?  I would argue the statistical significance of trend reversals suggests the supplements were the cause of the reversal.

 

Then, in his Conclusion, he suggests that his regimen may slow or reverse the progression of smoldering myeloma.  For those patients whose trend lines are moving in the wrong direction, this or other supplementation plans may be an alternative to the watch and wait approach.

 

I agree with TAB. I don’t want to watch and wait. I want to act. The purpose of all my research is to try to stay on top of promising non toxic anti-myeloma substances and test them out on myself, providing they don’t cost an arm and a leg and can be ordered from a reliable source. True, what works for me, or what works for TAB, won’t work for everyone (I wish the opposite were true!). But if we don’t try, we will never know, right? The important thing is to make sure that we focus only on supplements backed by solid scientific studies. And we should inform our doctors about what we are doing. And also, never forget these three words: DO NO HARM.

P.S. TAB’s report is now publicly available on my blog (see my August 2012 posts). You can also write to him. Here is the relevant link: http://margaret.healthblogs.org/good-or-bad-for-myeloma/smoldering-for-14-years-tabs-story/ Please note that I no longer send his report to individual readers, since it is available on the blog now. Thanks! UPDATED in the fall of 2012.

In my September 10 2007 post on how to (try to!) enhance the bioavailability of curcumin, I mentioned a study (abstract: http://tinyurl.com/2t73w5) showing that curcumin, when heated up, is more easily absorbed by the body. At the time, I didn’t have access to the full study…just the abstract. Well, two months ago (you can see how far behind I am…!), a blog reader, grazie M.!, sent the whole shebang to me. Fabuuulous. Then, a bit more recently, Sherlock did the same (grazie!). Well, well, it’s certainly better to have two copies than none…

 

The study focuses on a series of tests carried out on curcumin and turmeric by a team of Oklahoma researchers. I extracted what I consider to be a few interesting bits.

 

Here is something that any curcumin “experimenter” knows: Curcumin is practically not soluble in water at neutral or acidic pH. But the Discussion part adds that, while most of the curcumin tested did remain insoluble in water (98.5% for curcumin and 94.7% for turmeric), there was a slight increase in solubility when heat was added: from 0.21% to 2.6% with curcumin and 1.7% to 5.3% with turmeric. Not much, certainly.

 

But read this: However, even with these low levels of soluble curcumin, we were able to observe an 80% inhibition in protein-HNE modification. HNE modification is considered to be cytotoxic, mutagenic, and genotoxic. The abstract tells us that HNE, a major oxidation by-product, is also involved in disease pathogenesis, as we also read in this 2006 study (same authors, by the way): http://tinyurl.com/c8a8o8

 

The researchers believe that the water-soluble curcumin has the potential to enhance the pharmacological utility of curcumin, and this factor should be considered in clinical trials involving curcumin. HNE modification of protein could be a way in which curcumin exerts its effect.

 

This report deals with (1) development of procedures designed to improve solubility of curcumin, (2) development of a simple detection method for curcumin, and (3) testing the pharmacological utility of the solubilised curcumin using an in vitro assay.

 

In these tests, curcumin became 12 times more soluble when heated. Turmeric, in comparison, became only 3 times as soluble.

 

A really important point: the heating procedure did not affect curcumin stability. […] The heat treatment did not cause the curcumin to disintegrate […]. In fact, Heat treatment actually appears to protect curcumin from breaking down faster. That is a bit of more good news. Well, ok, we actually knew this from the abstract, which states that there was no significant heat-mediated disintegration of curcumin.

 

Discussion part: Increasing evidence points to the involvement of oxidative stress in the pathogenesis of several diseases. Curcumin is very attractive on account of the fact that it can intercept potent carcinogens such as reactive oxygen species. Of special interest is the ability of curcumin to neutralize these dangerous free radical species. Curcumin has been shown to have antimicrobial and antiprotozoal activity, antimalarial, anti-angiogenic, and antitumor effects and a variety of other biological effects.

 

Two of this study’s authors recently wrote a letter to the Editor of “Clinical Cancer Research” (grazie, Sherlock, and thanks also to a blog reader) urging for heat-solubilized curcumin to be tested in clinical trials. Based on the results of the Phase II clinical trial of curcumin in patients with advanced pancreatic cancer (see my Page on this topic), they suggest that the bioavailability of curcumin could be increased before oral administration to patients.

From all this, it seems that it would be helpful to heat up curcumin a bit before swallowing it. I have done that in the past, and even now, every time I make a curry, I take my curcumin capsules together with some heated spicy sauce. I have actually been doing that for years now…of course, I don’t have a curry dish every day…

Thanks for all the answers, both private and public, to my April 17 post. That evening, I asked Stefano the very same question. His answer: “at home, in my own bed,” just like many of the folks in the videos.

And here is my response: I would like to wake up surrounded by puffins. You see, the few hours that Stefano and I spent last year on the Farne Islands (Northumberland, UK) were absolutely magical. I have had few comparable experiences in my entire life. And now, whenever I want to think a blissfully happy thought, my mind almost always wanders back to the Farne Islands and those adorable seabirds.

Well, as it turns out!, Stefano and I will soon be waking up…on a small island…surrounded by puffins, their chicks, and other sea birds…

It’s a rather long story, which I will do my best to shorten. A few months ago Stefano and I began thinking about how we would like to celebrate our upcoming 10^th wedding anniversary (…and what we could afford!). We went through various options: a weekend in Paris, London or Prague…a long weekend hiking through one of Italy’s national parks…and so on.

Then we remembered a place that a blog reader/friend told me about last year: Skomer Island, Pembrokeshire, UK. While it hosts one of the most spectacular and accessible seabird colonies in Europe, this island is perhaps most famous for its large puffin population. You can visit Skomer during the day, but there is also overnight accommodation for a restricted number of people, 15 at the most. Well, Stefano and I, puffin maniacs that we are, decided that we wanted to spend at least one night on the island: our idea of the perfect anniversary!

Unfortunately, by the time I called the Wildlife Trust of South and West Wales, it was too late: the island was completely booked from mid April to late July. You can imagine our disappointment. So we looked at other options and forgot about Skomer. But, strangely enough, we just couldn’t make up our minds…and we procrastinated booking elsewhere for weeks. And then…

Many weeks later, out of the blue, Stefano asked me to phone the Wildlife Trust to see about booking an overnight stay on Skomer for next year. So I did. And, lo and behold, I was told that the Trust had JUST received a cancellation for one night in early July. How coincidental is that? Needless to say, Stefano and I grabbed those two unexpectedly vacant spots. My wish has been granted. Puffin darlings, here we come…!

For more information about Skomer, have a look here: http://www.welshwildlife.org/skomerIntro_en.link

A couple of blog readers (thanks!) sent me this link: http://tinyurl.com/c49rgl Extraordinary…brought tears to my eyes…well, I hope you enjoy watching this as much as I did!

My cousin (thanks!) sent me the links to two videos that I found absolutely fascinating. One was filmed in Brooklyn, U.S.A., the other in London, UK. The idea behind the two films was quite simple: stop and ask 50 people the exact same question and film their answers. This is the question: where would you like to wake up tomorrow morning?

I loved watching how people reacted, even though I thought the films could have been speeded up a bit (but perhaps therein lay their charm…). I am going to wait a bit before telling you what my answer would have been, had I been asked that question…I am very curious to know your answers first, so please leave me a comment or send me a private note. Just write down the first thing that pops into your mind…as I did.

Here is the London link, by the way: http://fiftypeopleonequestion.com/locations/4-london-uk. From there you can click on the Brooklyn link.

A recent exchange with a blog reader/myeloma patient list member made me rush to re-read and re-post about a 2007 Mayo Clinic study titled “Clinical Course and Prognosis of Smoldering (Asymptomatic) Multiple Myeloma” (the full study is now available: http://tinyurl.com/c9f8lb).

 

It is based on a review of Mayo Clinic smoldering myeloma patients whose risk of progression to active myeloma was calculated at 10% per year for the first 5 years, 3% for the next 5 years and 1% for the last 10 years (“last”? Hmmm…). But read this: the cumulative probability of progression was 73% at 15 years.

 

I knew about this study, I even posted about it after it was published, but, I confess!, back then, for some inexplicable reason, I completely missed what I now consider to be one of the main points: the cumulation business. Okay, I am hardly a math genius…never was, never will be. But I must also have been in denial at the time, because the study spells it out…very clearly…as we will see.

 

First, another admission: I probably would have paid more attention to this study if it had focused on my own age group, give or take a few years, in a similar state of, uhm, good health. I have always been very very (very!) wary of statistical studies…there is so much missing information, blablabla. I find these studies interesting, but that’s where it ends.

 

Anyway, point is, what I remembered about the study’s percentages was totally wrong. I thought that after 5 years spent in a smoldering state, the risk of progression to active myeloma went down to 3%. Well, sure, technically that is what happens, according to the Mayo study, but it’s not that simple.

 

It’s not as though you begin each smoldering year from scratch. With every year that passes, in fact, you have to add the risk percentage that you accumulated in previous years. My blog reader set me straight on this point: the progression risk is cumulative. That means that after, say, six smoldering years, your risk of progression is as follows: 10 x 5 = 50 + 3 = 53%. Oh boy, there is quite a difference between 53 and 3%!

 

Let’s see, based on this study’s group classification, I would be in group 1. So, now that I am in my fourth smoldering year (as far as I know), my present risk of progression to active myeloma would be about 40%. Not too staggering. But what shocked me for a split second is this: even if my overall risk percentage drops from 10% to 3% next year, my cumulative risk percentage could reach 90% in 2020. 90%??? A question popped into my head as I read that: has anybody gone beyond the 100% threshold? Okay, that’s my goal now…to pass that threshold…!

 

Another thing caught my eye: The median time to progression was 2 years in group 1. Well, I am way past the median point…I have been in group 1 (in fact, a couple of times I even jumped into group 2, a “better” group in terms of progression risk) for 3.5 years, now, so I have beaten the median time, at least.

 

You can read the study on your own and, if you are smoldering, figure out what your risk of progression might be. Or…not. You see, I am not at all sure that I am better off knowing about this cumulative business. I think I might have preferred to have lived the rest of my life in blissful ignorance of the…dangers of progression.

 

But statistics are just numbers, after all…and numbers can be beaten. And, as my case shows, median times can certainly be beaten!

In conclusion, based on conventional medical statistics, my progression percentage seems to be much higher than I thought (er, if I even thought about it at all…!). So, the question is: am I worried about progressing to active myeloma? Uhm, let’s see now, I will have to get back to you on that one in the year 2029…or 2039…or…

A blog reader (thanks!) sent me a link to an extraordinary video that I think you will all enjoy:  http://www.youtube.com/watch?v=xgHmSdpjEIk. Watch it, then click on this link (no cheating, now!): http://tinyurl.com/cc5ssw Hard to believe, huh?