Quick update

February 27, 2020 / Margaret / 2 Comments

Well, quite a lot has happened since I wrote my post on the loss of our Priscilla.

A few days after her death, Stefano came home complaining of a sore throat, which soon turned into a full-blown case of bronchitis: more proof, to me anyway!, of a close association between stress (and, in this case, probably grief as well) and a lowering of the immune defenses.

Anyway, we tried to be careful, but to no avail: on top of everything else, I caught his bronchitis and was sick (againnnnnn!) for about two weeks. This happened in mid January or thereabouts. So, all in all, I was sick/convalescent/sick/convalescent for more than a month. Agh! Ridikkulus!

But now I’m fine…fully recovered.

The horrible month of January 2020 ended with another death: my mother-in-law…This didn’t come as a complete surprise, since she’d been doing poorly for some time, but still, on top of everything else…it wasn’t easy.

But, as an upcoming post will show, things seem to be slowly getting better. As I mentioned, I’m fully recovered, and…well, okay, here’s a sneak preview of that above-mentioned post: Stefano and I spent a lovely long weekend in Paris recently. 🙂

We were lucky and managed to return to Florence right before Italy was hit by the coronavirus “hurricane.” Speaking of which, even though I think that the COVID-19 outbreak has generated a bit too much mass hysteria (in Florence, e.g., where thus far there have been only a couple of confirmed cases, people have been emptying supermarket shelves, and so on…), I have to admit that I’d really hate to catch that blasted virus because of my probably-still-weakened condition. So I’m being very cautious…trying to stay at home as much as possible…No hugs, no kisses…washing hands all the time, etc.

Ah, before I go: tomorrow I’m going to publish a post about a new curcumin-myeloma patient study!!! 🙂

Take care, everyone! 🙂

Priscilla

January 20, 2020 / Margaret / 22 Comments

Well, it’s been a really rough three weeks. The first thing that happened was on January 1, no kidding, when I came down with a case of the flu (much worse than the before-Xmas flu). It’s going around. A lot of people are sick with this thing. Anyway, it hit me with a very high fever and huge gastrointestinal issues. Terrible. Plus, one night, delirious with fever, I fell against the bathroom wall and injured my wrist. Ouch.

Because my wrist was all swollen and hurt like the dickens, and I feared it might be fractured, Stefano took me to the emergency room at Florence’s university hospital, Careggi. We spent 13 hours there. They checked me out thoroughly, not just my wrist, but everything, from head to toe.

Result: I had pneumonia, but luckily my wrist wasn’t broken. No fractures, nothing. Just a bad trauma. So they put a sort of splint (which was partly a cast, too) on my arm for a week, and now that the cast is off, I have to wear a brace for another 10 days or so. My wrist will be fine. Oh, and my pneumonia is gone, but I still have to be careful…so I’m convalescent, well, I’ve actually been convalescent for more than a week now.

So things are getting better for me, physically, I mean, and in fact I can finally use my left hand to type a little bit.

But something simply awful happened on Friday morning. I found Priscilla, our 14.5 year old cat, lying on the bathroom floor, panting, not moving at all. She didn’t respond to my voice, as she usually does. Scared the heck out of me. Here I was, with a brace on my arm, unable to do anything for her…pick her up, etc.

I called my cat sitter who came over and drove us to the vet clinic.

In a nutshell, after a whole bunch of tests were done on Priscilla, we found out that she had advanced heart failure and that her chest was full of pleural fluid, which the vets aspirated, well, most of it. The prognosis wasn’t good, of course. But the vets said that if she responded to treatment, she could come home with us…as early as today, Monday, yes. So we left her at the clinic. We really didn’t have a choice, since we believed that she would get strong enough to come home…

Knowing what I know now, I wish now that we’d just brought her home on Saturday.

Yesterday, early Sunday evening, that is, Stefano and I were preparing to go see her at the clinic, at the regular visiting times, when we got an urgent call from the clinic. Priscilla had gotten much worse, and we were told that she was on her way out.

We rushed over to the clinic, but we arrived too late. She had passed away just a few minutes before we got there.

We didn’t have a chance to hold our sweet kitty and say goodbye, and let her know that we were there and loved her. And that’s what’s killing me right now…and Stefano, too, of course.

It just went so fast. Too fast. We weren’t prepared at all for this. She was here with us on Friday…and gone yesterday.

We’re devastated. Absolutely shattered. We now need time to mourn…we need time…Oh, this is so hard. I just wanted to let you know that I probably won’t be here on the blog or FB anytime soon. Sorry about that. I’ll be okay, but, as I said, I need some time…

Now I need to stop typing because my wrist is bugging me.

Take care, everyone. I’ll be back as soon as I feel better. Ciao!!!

Buone Feste! Happy Holidays!

December 24, 2019 / Margaret / 3 Comments

Well, this year I have to admit that I don’t have much in the way of a festive spirit, which is very unusual for me. I have always loved the Xmas holidays, decorating the house, making cookies, etc.

Not this year.

There are several reasons why I’ve been down and out about the holidays. One is that Stefano and I were supposed to be in Prague right now, lovely Prague with its glittering streets and Xmas markets…but instead we’re still here, in Florence. We had to cancel our trip to Prague because I came down with a rather nasty case of the flu (high fever, etc.) on the eve of our departure.

Of course, now I’m fine… 😉

Typical.

That’s not the main reason I’m all down and out, just one of the many. But I can’t talk here about the other ones (which have nothing to do with me or my health, or with Stefano, mind you!). Suffice it to say that this hasn’t been a brilliant period…not at all. I keep getting bad news about people who are close to me…And I’m sure all that accumulated stress contributed to my finally giving in to a stupid case of the flu. Ahhhh, stress…How sneaky it can be…

Anyway, we’re trying our best to put together a nice little Xmas just for the two of us. Stefano is in the kitchen right now, cooking up a storm. Yesterday he made a huge pot of broth (his broth is legendary…) and other yummies. Today he’s making a huge meat sauce. I made a fantastic cake. So one thing is for sure: we won’t die of hunger! 😉

The day after Xmas we may drive to northern Italy. Or we’ll stay here at home, watch Xmas movies and get some rest. We’ll see what we feel like doing. The important thing is to be together…

Anyway, sorry for not being my usual optimistic cheery self, but I’ll get over it. 2020 is around the corner, and this dastardly period of bad (and very bad) news just has to end. Enough is enough!

So, with that in mind, I hope you are all having a wonderful restful and fun holiday period…

HAPPY HOLIDAYS, everyone! 🙂

A FEW HOURS LATER: Okay, okay, OKAY! I am MUCH more in the holiday spirit now. We decided to go on a short trip with my brother-in-law and his family day after tomorrow. Yes, some fun is back in the holidays again. I’m almost back to my old festive self now, hehe.

Love and happiness to everyone! 😎

Treat so-called “high-risk” smoldering myeloma…Yes or No?

November 7, 2019 / Margaret / 3 Comments

My (predictable) answer is “NO, absolutely NOT.” Not until you begin having CRAB symptoms. But first things first…

I began writing this post last week, then I just had too many things to do so I didn’t finish my draft. Then, yesterday morning, before going to work, I came across an article by Dr. Brian Durie (I don’t think I need to explain who he is!) making some of the points I had already made in my draft, BUT from the point of view of a world-famous hematologist.

So I decided to cut my draft in half and give you the link to Dr. Durie’s piece: http://bit.ly/2WWwsX9

But, of course, I still have some comments to make… 😉

First, though, a bit of background. In a recent trial, the ECOG trial that Dr. Durie refers to in his article, lenalidomide was administered to so-called “high risk” smoldering myeloma patients. Based on the trial results, the authors state that lenalidomide “may” delay progression to active myeloma.

Yes, this was a “big” SMM trial, the biggest to date, anyway, with 182 participants…but, according to Dr. Durie, “Of the 180 patients in the ECOG trial, only 13 with HR-SMM received treatment with lenalidomide. Though their outcomes were improved versus observation alone, this is an extremely small number of patients as a basis for a “standard of care.” In addition, the remaining patients (the vast majority of them) were those with lower-risk SMM, and they did not achieve benefit with treatment. This is important on many levels, not least because the criteria for the diagnosis of HR-SMM are currently in flux.”

There are many points of discussion here. First of all, based on data from only 13 patients, the authors recommend that lenalidomide be offered to patients with “HR” SMM. Based on data, I repeat, from only 13 patients, the authors suggest that lenalidomide should become a “standard of care” for the so-called “high-risk” smoldering myeloma patients…

Does that make sense? Not to me…and not to Dr. Durie.

Secondly, why the heck were lower-risk SMM patients included in this study??? Ooooh, that makes my blood boil.

And it begs the question: why did these patients agree to be included? This just goes to show that we (patients) need to be more informed, much more informed, about what we might be getting into…I’m not saying those patients weren’t informed, perhaps they were, but boyohboy, if my hematologist suggested that I participate in a study testing a conventional drug with potentially very bad side effects, you can imagine what I’d say…

And, thirdly, what Dr. Durie says about the “criteria for the diagnosis” of “high-risk” SMM is something I’ve been saying over and over again in various posts on this topic, and that I’d made in my draft last week, too. And that is why I want to put it in BOLD lettering: the experts themselves do NOT agree on the definition of “high risk smoldering myeloma.“

And hey, if THEY can’t agree, how can I trust them to tell me that I need to start taking a drug that might give me some serious adverse effects and bring my quality of life down a notch or even several notches? Sure, it might not. I might react perfectly well to the drug and be perfectly fine. But nobody can tell me that taking lenalidomide is as safe as taking a vitamin pill. There are a number of potentially very bad side effects, including the onset of other types of cancer (as well as blood clots, severe liver problems, etc.).

And in fact, according to Dr. Durie, “Among treated patients, 40% came off treatment due to toxic adverse events.”

40%. That’s quite a large number, don’t you think?

Interesting note. Dr. Durie also writes: “If a patient with SMM progresses, what is that? Is it myeloma? Maybe, maybe not.” Precisely. Nobody knows. When you begin fiddling with SMM, things can get very muddy. Did you progress to active MM because of the cancer or possibly because of the drugs you were taking? There are so many factors involved in progression…most of them, still unknown.

One last…rant. Whenever I read about patient trials, I always ask myself how these folks are doing, how lenalidomide (in this case) has affected their quality of life, if at all. I mean, what’s the bloody point of surviving for a longer time, or of delaying progression to myeloma, if you’re going to spend most of that time in a hospital, fighting off infections, skin rashes, blood clots, or…well…or worse?

Studies don’t provide us with that vital bit of information…

And they should.

P.S. The full study is available online for free, so you can take your own look at it and draw your own conclusions (I have only skimmed it…no time to do more that that right now…but I will read the full shebang soon!): http://bit.ly/34Eqe0U

P.P.S.S. The basic information is also contained in this Mayo Clinic press release, dated October 26, 2019: http://bit.ly/2NLKmax

Dirty dishes

October 14, 2019 / Margaret / 1 Comment

I’ve been interested in this topic ever since, months ago, I watched an interview on CNN with the neuroscientist Matthew Walker. Eight hours of sleep, he says, is what we need. Eight hours of sleep in complete darkness (otherwise our brains won’t release melatonin, something I didn’t know…).

An important point (again, something I didn’t know!): taking naps to catch up on our sleep doesn’t count.

“Unfortunately, says Matthew Walker,” “sleep is not like the bank. You cannot accumulate a debt and then hope to pay it off at a later time.”

And, he added, “Human beings are the only species that deliberately deprive themselves of sleep.” Now I sort of envy my cats who sleep most of the day, as can be seen in these recent photos …zzzzz…!!!

Anyway, since that interview, I’ve come across other articles on the negative effects of not getting enough sleep, which a 2019 study has tied to increases in two Alzheimer’s proteins (http://bit.ly/33q1uJ9).

Yikes…!

A 2013 study (https://n.pr/316zAQT) showed that our brains need a certain amount of time to get rid of harmful proteins, and that time has to occur at night. The brain, says the main researcher, is like a dishwasher. I really like that simile…It helps us visualize how things work. I mean, if you turn off your dishwasher before it has finished its full cycle, you will end up with a bunch of dirty dishes, right? Same thing if you wake up before you SHOULD …Those dirty dishes can really clog your brain! 😉

I’m actually writing about this topic today because this morning I read about a NEW study showing that sleep deprivation shuts down the production of essential brain proteins: http://bit.ly/2nDzimP

Gee whiz!

Oh, and sleep deprivation has also been linked to cancer…quelle surprise…not!

This topic therefore isn’t entirely unconnected to myeloma. The main thing is that we need our sleep…all eight hours of it!

Oh, one last thing: since reading about the importance of sleeping in “total darkness,” I’ve begun wearing a mask at night, nothing fancy, just a plain black mask that covers my eyes. Oh boy, it does make a difference: I don’t wake up as much during the night…and even the cats don’t disturb my sleep (well, not as much as they did before!) when, e.g., they walk over my body or rub up against my face…Give it a try!