Thursday, June 17, 2010

Mayo test results are in, and ...

... Bon Jovi, put some clothes on, for the love of God! Aren't you getting cold?

Yeah, my M-spike is up to 3.6. I want to stress that, even though 3.6 freaks me out a little, Dr. H says she is NOT AT ALL FREAKED OUT BY THIS. She said she totally understands how it would freak me out to watch it move from 1.7 to 3.6 in a year's time, but she sees myeloma patients all day, every day, and she's seen people who move from 1.7 to 3.6 in one week's time, so I'm actually doing very well. All of my other numbers are fine. I'm a teeny bit anemic, but, again, not enough to freak out Dr. H.

That said, she also thinks it's time to start thinking about some drugs again, probably within the next couple of months, just to be on the safe side. I have a few options. One is to return to Revlimid, either with or without the dex (I vote for without). The other is to enroll in a clinical trial of pomalidomide plus dex at the Mayo Clinic. If you read my highly scientific and insightful posts about ASCO, you already know that pomalidomide is Revlimid: The Next Generation:

I haven't decided what I'm going to do yet. On the one hand, pomalidomide is supposed to be a better drug, with fewer side effects than Rev, and I would get it for free, since I'd be on a clinical trial. On the other hand, I feel like I should exhaust the Revlimid (which was still working for me when I quit), before I move on to the next drug. Plus, I'd have to go to Mayo once a month for the pomalidomide trial, and I'd be required to take it with dex, at least at the beginning. With the Rev, I have the option to try it without dex to see if it worked alone.
Decisions, decisions. What would Bon Jovi do?

Saturday, June 12, 2010

Buy some cuteness for a good cause

If you enjoyed Dorothy Buddy's adventures in Chicago, why not order your own Myeloma Buddy? Fellow myeloma patient Feresaknit is hard at work making more of these buddies, and now all of the profits will go to the Cancer Kicker Foundation, started by myeloma patient Phil Brabbs. You can order you very own buddy at Feresaknit's Etsy shop for just $10!

Monday, June 07, 2010

Hope and S'Myeloma

I realized that, a few posts ago, I forgot to provide a link to Don's blog. It's called Myeloma Hope. Don is the other myeloma blogger who was at ASCO, and I think his blog is much more informative than mine is. He has a really good post weighing the pros and cons of Revlimid maintenance therapy. Plus, Don eats all organic food, so he was probably paying closer attention to all of the presentations instead of thinking about M&Ms.

I also invite you to visit Sean's blog, Myeloma, Youreloma, because he gave me the "S'Myeloma Award" for my ASCO reporting. Heh heh. I totally think they should change the official name to S'Myeloma. Wouldn't that take the sting out of the bad news? You couldn't help but smile while being told you had S'Myeloma, could you?

I'm breaking out in multiple S'Myelomas right now.

Dorothy Buddy in Chicago

The IMF thought they were flying Jay and me to Chicago. Little did they know, there was also a stowaway:

Yep, that's Dorothy Buddy, my Myeloma Buddy specially knitted for me by fellow myeloma blogger Feresaknit and sent to me all the way from England. Here's Dorothy Buddy enjoying a Chicago-style pizza. Don't get any sauce on your yarn, Dorothy Buddy!

Now, Dorothy will give us a tour of our room at the Hard Rock Hotel. Nice view of Michigan Avenue!

Whee! Look at the opulent photo of Tina Turner!

Time to relax ...

Ahhhh .... comfy.

What? A giant photo of The Beatles above the toilet? This place is crazy!

I'm a little overwhelmed. I think I'll lean up against the mirror for a while.

Thanks, Dorothy Buddy! You're an excellent tour guide.

Sunday, June 06, 2010

ASCO: Day Two

This morning’s myeloma session was three hours long. Three! It was a three-hour tour, a three-hour tour:

I'm Gilligan. Everyone else was the professor.

I made it through a little over two and a half hours of the session. It started at 9:30, and by about 10:30 I started to get the munchies, and I spent the next hour and a half trying to focus on all of the graphs and charts and data instead of on the free M&Ms I’d picked up from the Managing Myeloma booth that were still in my bag. None of the hundreds of black-suit-wearing scientific types all around me were digging for M&Ms in their bags, so I fought the temptation and did not give in. In my defense, the guy right in front of me fell asleep, so I figured at least I had him beat. I might have been thinking about M&Ms, but at least I was fully awake.

Finally, around noon, I was so starving I couldn't take it anymore and had to run to the concession stand. The charts and graphs were turning into giant hams, like in cartoons. I had to head out, but I learned several important things.

For one thing, Bortezomib (aka Velcade) is pronounced “bore-tez-uh-mib”, which is more than I knew when I arrived at ASCO. I’d read the word before, but I’d pronounce it in my brain like, “Bortey-blah-blah-uh-bib.” So that’s nice to know.

The first sessions this morning were about finding new ways to combine existing drugs to make them more effective. For example, when you combine "bore-tez-uh-mib" and thalidomide (somewhat newer drugs) with melphalan and prednisone (back-in-the-olden-times drugs) you get a good response. I walked in a couple minutes late on this one, but right as I walked in, the presenter said, “This is the best available treatment option for the elderly patient.”

The next study combined low-dose "bore-tez-uh-mib" (Velcade) with reduced-dose thalidomide and dex, and compared it to regular-dose Velcade plus dex as induction therapy prior to a stem-cell transplant. It was a VTD vs. VD smackdown!! Who emerged victorious? Velcade, Thal, and Dex kicked Velcade/Dex’s butt! Woo hoo! I also jotted something down in my notes that said, “Toxic death = 0.” That’s always good to know. Also, Toxic Death would be an excellent name for a band.

The next presentation was pretty interesting, in that it found a drug combo (melphalan, prednisone, and Revlimid) that seems to get the same results as a transplant, without the horrible side effects of a transplant. I wrote down, “works the same, and safety profile is one of the best.” It was stressed that more follow-up is needed, but it’s still pretty exciting.

Next, another drug combo was presented: Revlimid, Velcade, and Dex in patients with newly diagnosed myeloma. I jotted down, “This is the first regimen to get 100 percent response rate without a transplant”, and “May represent basis of future standard of care.”

Then there was a brief discussion on the role of transplant in myeloma:

(I thought your eyes and brain could use a break for a minute)

The presenter asked, “Is it really time to abandon the transplant? Maybe … but not yet.” More follow-up is needed on all of these studies, but, heck, I think a “maybe” is much better news than, “Hell, no!” Am I right? I also wrote down, “Up-front transplant might be useful only in subgroups of patients”, meaning that the rest of us can get away without one.

Finally, just before I succumbed to starvation, there were two presentations on the use of Revlimid as maintenance therapy after a transplant. This means, you have a transplant, and then you take low-dose Rev, maybe forever. Both studies agreed that the Rev greatly improved progression-free survival, but, again, more follow-up is needed to see how it affects overall survival. One study did find that 88 percent of patients on this regimen were still alive four years after diagnosis, which seems huge to me, since the five-year survival statistic for myeloma used to be a dismal 30-something-percent.

After we grabbed some lunch, we were off to the airport, and now we're back in KC. Our whirlwind tour of Chicago is over. (I'm planning a future blog post with a few photos, so stay tuned.) I thought it was a great time, and I am so grateful to the IMF for flying us out there. I also just want to drop a tiny hint in the IMF's direction that I heard about an upcoming myeloma conference in Paris. Cough cough.

I'll try to sum up what I learned:

1) Lots and lots and lots of people go to ASCO
2) Many of the booths hand out free chocolate, jellybeans, and cappuccino
3) If you're a newly diagnosed myeloma patient, have faith: There are lots of new drug combos and new drugs on the horizon, and you're sure to find many, many options to fight off your disease for a long time to come.
4) Even if you're an old-timer myeloma patient and other therapies have failed you, one of the newer ones might work for you.
5) The Celgene booth was also handing out free chocolate-covered biscotti.

Saturday, June 05, 2010

ASCO: Day One

ASCO is crazy! Not just plain crazy: cuh-huh-huh-ray-zay! I can't even begin to guess how many people are here. My best estimate would be about a go-zillion, and all of them are striding briskly about the enormous conference center in black suits. Part of me thinks, "Wow! How cool is it that I have a disease so important that a go-zillion people are all striding about an enormous conference center trying to make it all better?" The other part of me thinks,"Wow! How terrible is it that I have a disease so awful that a go-zillion people are all striding about an enormous conference center trying to make it all better?"

We took a shuttle bus from our hotel to the conference center. I heard someone say that there are 12 shuttle bus routes with 15 buses per route, constantly coming and going from hotels to the conference center all day. That's how many people are here. After what seemed like hours, we made it through the sea of black suits to the registration desk, where I got a big badge with a light blue ribbon on it that says, "Cancer Survivor". Then they sent me over to another desk where I got -- score! -- a free tote bag! You are totally jealous of my fatal disease again, aren't you?

Jay and I wandered through the exhibit hall, which was enormous. Of course, we stopped off at the IMF booth, and we also visited the Multiple Myeloma Research Foundation and the Managing Myeloma booth. Celgene (the makers of Revlimid) had an enormous booth, and they were giving away (wait for it) free cappuccino. In fact, most booths were giving away stuff. I walked away with some M&Ms, some jellybeans, and a couple of Hershey's kisses from the Velcade display. Nice.

Then it was time for today's myeloma session, "Novel Therapies for Myeloma." It turns out, when doctors say they are going to discuss "carfilzomib", they mean they are really going to discuss "carfilzomib", and not sip margaritas. Dang.

I totally went, and I totally took notes, but I'm not sure I understood my notes while I was taking them, and I'm not sure I understand them now. For example, at one point I wrote down, "rat and monkey models". What? I also actually wrote down, "When you block the (something somethings), you get killing of myeloma cells." I actually wrote "something somethings."

And these doctors really, really like charts and graphs. There were some absolutely beautiful charts and graphs at these presentations, in all colors of the rainbow. Some were very elaborate, with big circles and lines and wavy things, and things that looked like enormous purple eyeballs and starbursts. I had no idea what they meant. Maybe they didn't mean anything.

But I guess what I came away with is this: There are a couple new drugs being studied (pomalidomide and carfilzomib) that are like Revlimid and Velcade: The Next Generation. These drugs seem to work better, have fewer side effects in many cases, and -- what the doctors seemed most excited about -- is that they seem to work even on patients who have already been through tons of previous therapies. So, for example, if Revlimid quits working for you, Pomalidomide (the next-generation version) could still probably work. As a patient, this left me feeling very hopeful about all of the options for the future. Here's one of my notes that I do understand: "These new agents are very exciting, even if they are new versions of old drugs."

After the session, I was able to meet up with fellow myeloma blogger Minnesota Don and meet his family, who are all just lovely, lovely people. I keep telling you: Only cool people get myeloma.

That's all for tonight's report. All of that brisk striding has me worn out.

Friday, June 04, 2010

ASCO preview

I started preparing for tomorrow's trip to ASCO by listening to a pre-recorded, pre-ASCO teleconference presented by IMF Chairman Dr. Brian Durie. I listened for about 25 minutes, then tried to pause it, and then couldn't figure out how to get back into the teleconference. I told you I am not cut out for this scientific stuff, including pushing the correct buttons on my phone. The 25 minutes I heard, however, were actually pretty interesting, and I think I got a good overview of what will be presented at ASCO this weekend. I decided to break it down into an illustrated version.

First, there will be new data on the three major myeloma drugs: Thalidomide, Revlimid, and Velcade. Dr. Durie called these drugs the "Three Musketeers" of myeloma. I say, mmmm .... Three Musketeers ....

There will also be data presented on new drugs. These are like Revlimid and Velcade: The Next Generation:

And there will be studies on different combinations of all of these drugs. Again, I say, mmm ... combination ...

Finally, there will be discussions on the role of transplant in myeloma:

This photo actually has nothing to do with the role of transplant in myeloma. I just thought it would be nice to include.

Thursday, June 03, 2010

Public speaking

Today we stopped by the public library to check out some new books, and we noticed a huge crowd gathered in the parking lot. It turned out the library was holding a kids' pet show. A bunch of kids had brought their pets with them (mostly dogs, but there was one kitten, a rabbit, and a guinea pig), and one by one, the kids would walk up to the front of the crowd with their pets and talk into a microphone for a minute or two about their animals. Then one of the librarians would present them with a personalized ribbon for the pet.

WCK loves animals, so we sat and watched and listened to everyone describe their pets. Toward the end, a few kids who didn't have their pets with them still went up to the microphone to tell the crowd about their pets back home. WCK decided she wanted a turn at the microphone, too.

She walked right to the front of the crowd, brimming with confidence, and grabbed the microphone like an old pro.


The last line got a huge laugh from the crowd. HUGE. She clearly gave the very best pet speech out of anyone at the library. I think if her planned career as a paleontologist/scientist/astronaut doesn't work out, she has a big future in stand-up comedy.

The librarian presented her with a ribbon for "Cat With the Most Unique Name", and then WCK said, "THANK YOU, KANSAS CITY! GOODNIGHT!" Okay, I made that last part up, but she totally could've said it.

Then we came home, found Garland sleeping in the back of the closet, and set the ribbon on her head. She earned it.

The countdown is on!

Only two more days before I fly to Chicago to report back to you on exciting new myleoma findings presented at the American Society of Clinical Oncology meeting. The IMF already sent me two press releases that are "embargoed". Yes! That means that I have access to SECRET PRESS RELEASES, and I CANNOT TELL ANYONE WHAT IS IN THEM until the embargo lifts. I have never felt so cool in all my life. Perhaps I could post a video blog where I pantomime the press releases and you have to guess what they say. "Rhymes with ... Bevlimid."

Anyway, I wanted to give you plenty of notice about my trip to the ASCO meeting, so that you would know exactly where to go to read the most up-to-date, serious scientific information on myeloma.

And that place would be ... someone else's blog.

But if you want to read the ramblings of an English major attempting to explain scientific facts, then this blog is the place for you. I did take a few required science classes in high school and college, but most of the time I skipped class because I was "on a deadline" for the school newspaper. Being "on a deadline" usually meant that I'd go back to the newspaper office, drink cappuccino, play Tetris, and lament to all of the people around me about how unfair it was that I was getting a bad grade in my science class. Fortunately, all of the people around me were also English majors "on a deadline" who were also skipping their science classes (or math classes, or English classes that were boring, such as Brit Lit), so they'd nod sympathetically and then wrestle away the controls to the Tetris game. As a result, I'm not very good at science, math, Brit Lit, or Tetris. The educational system failed me!

Perhaps I can get a t-shirt made that says, "I am an English major. Please speak slowly."