First of all, I’d like to mention that day before yesterday I wrote Prof. Gertz a quick note, telling him I’d written my first post about the meeting in Campi Bisenzio. He kindly wrote back, letting me know that my post was, and I quote, very accurate. Later that day, he sent me the newly published study about the Australian MGUS and SMM clinical trial results. How about that? I was blown away…still am. Thank youuuuu!

Ok, back to the meeting. Prof. Gertz also talked about heavy and light chain myeloma. The heavy chains (G and A) can be measured, as we know, in the blood; the light ones (kappa and lambda) in the 24-hour urine test that we know all too well…sigh.

While it’s not THE disease, the protein can be used as a good marker, as a sort of gauge for treatment, he said. As for kappa and lambda, they can occasionally spill into the kidney, damaging the kidney filter. 15% of myeloma patients have kidney damage, which can be measured via serum creatinine and the Blood Urea Nitrogen (BUN) test. As for heavy chains, G and A are too big to get into the kidney, so those patients don’t have kidney damage.

Then he spoke about BONE issues. As we know, there are two types of bone cells, osteoblasts, which build bone, and osteoclasts, which destroy it. As we get older, it’s normal to have an increase in osteoclast activity (I read that bone mineral loss begins after age 30…). What is NOT normal is what happens to myeloma folks. Myeloma produces chemicals that activate osteoclasts. Result: our bones lose minerals and become increasingly porous and brittle. He then spoke about the drugs that can help us when this occurs, such as Zometa, but since we all know about bisphosphonates, I didn’t take any notes.

Then he gave us the following scenario: let’s say our garden is full of weeds, but instead of using a 15 or even 30 ml mixture of a certain (toxic, clearly) weed killer, we spray a 250 ml mixture all over it. What will happen? Obviously, the entire garden will die. But hey, we can’t live without the garden. We need our white cells to fight infections, blablabla. So we have to be amazingly careful with quantities…(unless we’re facing a stem cell transplant, in which case things are different…you have to avoid melphalan until the stem cells are collected etc. etc. etc.).

At that point he went through the different classes of “weed killers”: 1. corticosteroids such as dexamethasone; 2. alkylating agents such as melphalan. These two classes started being used 50 years ago to treat myeloma patients. And for a long time, there was little else available. He highlighted the fact that Dex by itself, in high doses, is able to kill a whole bunch of myeloma cells. In fact, if my notes are correct, 50% of all the myeloma cells in 50% of all multiple myeloma patients. But that 50% of patients would pay a terribly high price for this MM cell “massacre,” including (and here the good professor had us chuckling, especially when he listed the first three options): never ever sleep again, fight with anyone in sight, eat all the time, develop a bunch of allergies and problematic side effects such as diabetes and high blood pressure…I forget what else, but the list went on and on. So that’s not really a good option, he said. 

But nowadays we have a bunch of new drugs from which to choose. Let’s begin with 3. immunomodulatory drugs, such as thalidomide and its various descendants. He said that lenalidomide (Revlimid) is replacing thalidomide because of the irreversible peripheral neuropathy caused by the latter. But Rev has problems of its own: it can cause skin problems, diarrhea and leg cramps and can also have a negative effect on blood counts.

4. Proteasome inhibitors, such as Velcade and carfilzomib (the latter is being tested in investigational studies; 25, according to the clinical trial website). These block the “garbage disposal” = the proteasome in the myeloma cell, he said. What happens, therefore, is that the garbage starts building up inside the cell, which eventually gets “stuffed,” says “poof” and dies. (Okay, Prof. Gertz didn’t say some of this. “says “poof” and dies” is mine. 🙂 ) Great image. Incidentally, lest we forget!, curcumin is also a proteasome inhibitor… 🙂 Let’s see, what else? Prof. Gertz pointed out that the problem with Velcade is that it damages the nerves in the feet, whereas carfilzomib doesn’t. And of course, neither does curcumin (the references to curcumin are mine, of course, not the professor’s…).

5. He also spoke about a new, only oral proteasome inhibitor called MLN-9708. The goal, he said, is to have oral drugs, which are easier on, and more convenient for, the patient than intravenous drugs. I checked the clinical trials website, and MLN-9708 is currently being tested in six trials. Not a huge number, eh. Here’s an easy-to-read summary given by the Myeloma Beacon: http://goo.gl/64r6w

6. The second new drug he spoke about was Bendamustine, whose worst side effect, he said, are low blood counts (I actually read that there are a bunch of other unwelcome side effects, including nausea, fatigue, vomiting, diarrhea, fever, constipation, loss of appetite, cough, headache, unintentional weight loss, difficulty breathing, rashes, and stomatitis, as well as immunosuppression, anemia, and low platelet counts! Hmmm). Interesting history behind this drug. It was developed by East Germans and essentially ignored by the rest of the world for years…At any rate, I read this morning that it’s an alkylating agent…a nitrogen mustard (yeah, that’s right, mustard gas…sends shivers through me, I have to admit). Uhm…It’s being tested in 23 clinical trials right now…

And he also spoke of the importance of trying drug combinations, because of the issue of myeloma cell resistance. Again, we all know what that’s all about, so I didn’t bother taking any notes…

At that point the question and answer session began, and I took over from Vittorio. That means that I don’t have any more written notes. But I still have some good stuff…from what I remember, from the conversations we had at lunch (I was sitting right next to Prof. Gertz) and from my friend DB’s notes. I still haven’t mentioned what was said about curcumin, e.g. But that’ll have to wait until tomorrow…otherwise this post would be (again) too long. Besides, I have some work to do in the garden…while the sun is still up and about…Soooo…ciaooooooooo! 

P.S. The above photo is of some flowers (these are daisies, and you can catch a glimpse of my pansies, too) I’ve begun planting in our rather bare-looking yard. Spring has arrived! 🙂

I really enjoyed meeting Prof. Gertz on Saturday (see previous post). A down-to-earth, sensible, approachable doctor who explained difficult concepts in a way that was easy for everyone to understand. I’m happy to say I learned some new things, and I also learned how to look at myeloma in a slightly different way…

As for my translation of the question and answer session, I think it went well enough. If I couldn’t think of a word in either language, I’d simply pause and ask for help. When that happened, I guess here and there I made a few funny faces, since I could hear people giggling. In such an informal setting, that wasn’t a problem, of course (I mean, my making funny faces). During the lunch break, an elderly lady (with myeloma) grabbed my hand and told me never to stop smiling my beautiful smile. Sooo nice! Oh, and I also met another blog reader. She came up to me before the meeting began, introduced herself and told me she’d wished she’d known earlier about curcumin (hah, she’s not the only one! So do I! But, better late than never…). And others later asked for my blog’s URL, so I hope they will get in touch with me at some point…

Before jumping into the meeting, I wanted to mention that Prof. Gertz didn’t use slides. I was surprised to hear that, but he told me that he uses slides only at official gatherings such as congresses. During patient-doctor meetings and when he meets with his own patients, he prefers to draw his own charts and figures (see photo; that long thing poking through the bone  and going into the bone marrow from the top right is a biopsy needle, by the way…brrrr…). He wants the patient/s to pay attention to what he’s saying, without being mesmerized by slides. Makes a lot of sense to me, and it adds to my appreciation of this doctor. Ok, now let’s have a look at his presentation (which Vittorio translated, so I was able to take great notes): 

He said that if we buy a soup bone at the market and cut through it, the part inside the bone is called the bone marrow. Okay, so we all know that. But then he compared the bone marrow part to a “garden.” A healthy person’s “garden” contains the following stuff:

• 60% of the garden produces white cells, which we need, of course, to fight off infections and whatnot.
• 20% produces red cells that carry the oxygen our body needs. RBC is where our hemoglobin “lives,” he said.
• 10% produces platelets, the cells that clot our blood.
• less than 10% produces what he called “boutique crops,” that is, things that are not important for our discussion, such as eosinofils, macrophages etc.

And then we have a final 1%. And that’s the plasma cells. In a healthy individual, that percentage NEVER changes, from age 1 to 81. It’s always 1%. With all the stuff I’ve read over the years, I didn’t know (or remember) that interesting little fact…hah. 

Plasma cells. They’re important for our immune system. They produce huuuuuge amounts of antibody proteins that fight infections of all types. But in 4 out of 100000 people, the plasma cells become malignant. Their numbers keep increasing (= “uncontrolled growth”). And so our “garden” is invaded by myeloma cells, which he compared to “weeds.” As the weeds keep growing, they begin choking the normal cells. The red blood cells get hit the hardest…

And in fact 75% of all MM patients are anemic, which means they feel very tired and, e.g., can’t climb a flight of stairs…

Then the weeds begin spreading to what he called the “casing” = the area around the garden (that is, the bone). They begin to form “clusters” both in the garden and in the casing. Even the strongest bones can become weak, as a result. The clusters, he said, have the consistency of “raw liver,” so it’s easy to see that when our bones can break easily when they contain too much “raw liver.” He then talked about compression fractures in the spine and about how painful those are. He showed the movements that are the most painful for patients at this stage: movement from side to side, spine flexion. Even getting up off a chair or coughing and sneezing can cause a lot of pain. And so on.

80% of multiple myeloma patients have bone pain.

But how does a doctor figure out that a patient might have multiple myeloma? Anemia and back pain could be caused by lots of different things. Besides, some patients don’t have any anemia or bone pain. They are the ones with low amounts of weeds in their garden…the ones without symptoms…These are the MGUS or SMM folks…

Well, normal plasma cells make antibodies. Malignant plasma cells also make antibodies. However, the latter produces large numbers of antibodies, which increases the amount of protein in our blood = one way to reach a diagnosis of multiple myeloma. In addition, malignant plasma cells produce only ONE type of protein. The monoclonal protein. Bingo.

However, the problem isn’t the protein, he said. The problem is the cells that make the protein that damages the bone marrow: the plasma cells. 

Another important note. Prof. Gertz said that if, over time, the protein is declining, then the number of cancer cells is also declining. If it’s stable, then the plasma cells are also stable. So this confirms what I’ve thought for a while: if everything is stable, it’s pointless to have any invasive tests. That’s the main reason I haven’t had a bone marrow biopsy since my third one (2007); my haematologist agrees with me, by the way.

Since it’s getting a bit long, I’d like to finish today’s post with the following gem (by the way, this won’t be the last post I’ll be writing about the meeting. As I mentioned, I took copious notes during the first part, when I wasn’t “on stage,” so I still have some interesting stuff up my sleeve…):

Prof. Gertz asked us what we do when our garden is full of weeds. Well, we go to a garden store and get a weed killer, right? (Uhm, truth be told, I don’t use any weed killers in my garden…they’re all waaaaaay too toxic, and my garden is 100% organic…I’d rather have a few weeds than a bunch of toxic herbs!)

Well, he pointed out, in a similar manner, when you go to an oncologist, you want your tumor cells removed. Therefore, he added, oncologists are nothing but “glorified gardeners.”

Gotta love this guy! 🙂

First, the good news. Actually, this simply confirms what I (well, all of us) already knew: my numbers are stable. Rock solid. You see, I went to see my doctor yesterday. I should point out that this is my family doctor, not my hematologist. But this guy is absolutely brilliant, a genius, one of those rare people who knows a lot about…well…everything. I trust his judgment as much as I trust my hematologist’s. And, since it’s faster and easier to go to my family doctor than to my hematologist, that’s what I did this time.  

After comparing my most recent test results to older ones, he smiled and remarked, “i numeri sono fermi,” which basically means that nothing has moved…that all my markers are stable. In fact, he added, some of them haven’t been this good in years. 

😀

Okay, now for the second part of my post. So what am I going to be doing on Saturday morning in Campi Bisenzio (Florence, Tuscany, Italy)? Well, you see, in a moment of pure madness (I have never done anything like this!), I agreed to help my friend Vittorio translate part of the patient-doctor meeting with Prof. Morie Gertz who, among many other things, is Chair of the Department of Internal Medicine at the Mayo Clinic in Rochester, MN. You might remember that he was interviewed by the “Atlantic,” see my Feb 27 post titled “The patient’s environment matters.” 

My main role will be translating the question and answer session (back and forth between the two languages) as well as translating for Prof. Gertz (Italian to English). Vittorio and I will also take over for each other whenever one of us gets tired. Phew, I’m tired already! 😉

Oh wait, I have another important bit of info: Prof. Gertz has kindly offered to stay with us on Saturday afternoon, too (instead of going sightseeing in Florence…Now, that’s dedication!!!). Super. It will very interesting to spend some informal, quiet time with him…

Soooo, if you happen to be in this area and would like to attend, have a look at the agenda etc.: http://goo.gl/uZz25 

A blog reader (thanks, Ron!) gave me an interesting bit of news this morning, but I had to leave for work and didn’t have time to share it with you. Now that I’m back home again, here goes…

First, though, I’d like to thank my friend “Sherlock.” Shortly after we met (via my blog…a great way to meet great people, btw! 🙂 ), she insisted that I have my vitamin D levels checked, which turned out to be verrrrrry low. Thanks to her, I went to see an endocrinologist and began taking a vitamin D supplement. Boyohboy, based on everything I keep reading about vitamin D, am I glad that I listened to Sherlock. Sooooo incredibly glad! I take my vitamin D drops every morning…

But let me get back to what Ron sent me this morning. It’s an abstract on the importance of vitamin D especially for IgG kappa folks (what’s that all about? I guess we’ll have to wait for the full study to be published…uff), and it’s going to be presented at a conference next month in Dijon, France: http://goo.gl/QIXkU

Discussion: Vitamin D could be considered as an effective prognostic factor and treatment of MM, especially in patients with monoclonal IgG kappa immunoglobulin.

Okay, it’s getting late over here. Almost time for dinner…Soooo, ciao for now! 🙂

P.S. I began writing about vitamin D in 2009 (perhaps even earlier). Click here if you’d like to read some of what I have collected throughout the years on vit D, including the 2009 Mayo vit D-myeloma study, which showed that MM patients with low vitamin D levels have poorer outcomes: http://goo.gl/TSqoE Hey, if you haven’t done so already, please have your “D” levels checked!