Saturday, July 31, 2010
She waited until 9:55 this morning to make it "official," since that was the time she was actually born. She's very precise that way. She'll make a great lawyer. But that didn't stop her from opening presents and eating her chocolate chip pancake breakfast at 8:30.
A couple of days ago, I went to a music store to get her something for her birthday, and I settled on The Beatles Rubber Soul CD. I also got her a Hannah Montana karaoke CD, so she could sing along to "The Climb."
As I was checking out, the young man behind the counter looked at the two CDs and said, "I bet I know which one these is for you."
"Actually," I told him, "they're both for my 9 year old daughter." He raised his eyebrows, obviously impressed with the complexity of my daughter's musical tastes.
So, in her honor, two of her favorite Beatles songs, both from one of her favorite movies, Yellow Submarine (she's a big fan of Ringo): "Nowhere Man" (which is on Rubber Soul), and "Hey Bulldog," which I used to sing to her every night when she was smaller. Not a traditional good-night song, but, hey, she's a complex girl.
Wednesday, July 28, 2010
It's kind of heavy on the science, but not understandable. All of this stuff about targeted therapies that I've been writing about kind of comes together here.
Very cutting edge stuff.
Sunday, July 25, 2010
I'll say it again: since Dr. R mentioned Velcade and Bendamustine to me a few weeks ago, it seems like there has been a whole bunch of stuff related to those treatments online lately.
Here's a link to a short video from a local news show, featuring a woman who had Bendamustine (Treanda) for her NHL when several other treatments didn't work for her.
It doesn't say which type of NHL she has, and in fact kind of lumps all 30 or so types into one, but I can't complain about when NHL gets some kind of publicity. Awareness can only help us, especially if it gives a very promising treatment some good publicity.
Friday, July 23, 2010
The group took a different approach to cancer funding than usual. Rather than getting a group of experts from a field together, they gather experts from anumber of fields, with the idea that cross-fertilization, if you will, might produce new and interesting ideas. Time will tell.
The SU2C folks are going to do another telethon on September 10 at 8pm on a whole bunch of networks. A New York Post article describes a little bit of what went on last time, and what might happen this time.
To whet your appetite (if you'll pardon the expresion), here's a blast from the recent past -- mentioned in the NY Post article -- a brief bit from the first SU2C telethon in which Homer Simpson gets a colonoscopy.
Given my desperate search for good cancer humor to share, I don't know how I neglected posting this little gem for so long....
Tuesday, July 20, 2010
Last Thursday, researchers revealed results from the first round of the Cancer Genome Project. This is a very large-scale project that will involve looking at the DNA of cancer patients and determining which treatments work best on the markers present in that DNA. This is the essence of personalized treatment. The project started with melanoma, a good cancer to start with.
Read about it all here in a nice, easy-to-read article, unlike the ones I've been posting lately.
This was announced on Thursday, July 15th, which as it turns out was my two-and-a-half year diagnosaversary. Which means I'm also officially at 6 months since my first Rituxan treatment. So, a banner day all around.
Of course, I didn't realize is was benchmark day until the 16th. Otherwise, I would have had Isabel buy me ice cream.
Saturday, July 17, 2010
prognostic human lymphoma cell subset that emerges during tumor progression," and the full text is as thick and science-y as its title. Based on the abstract, I think I know what it's saying.
The problem with cancer isn't just the cancer cells, but the "host immune cells" that exist nearby. The interaction between the cancer cells and their neighbors seems to be what protects the cancer cells and keeps them from dying. In fNHL, says the research, there are a bunch of cells with low BCR, or B-Cell Antigen Receptors. The presence of these cells is an indication of how poorly a patient may respond to treatment -- more of these cells means less of a response to treatment.
Some good news, though: it seems possible to deactivate and reactivate the BCRs, suggesting that there's some mechanism that turns them off. So finding that mechanism and reversing it can mess with their abilities to protect cancer cells.
Someone in the support group also mentioned that this might hold a clue as to why RadioImmunoTherapy can be so effective: unlike some treatments that target only the cancer cells, the radiation in RIT will also destroy some nearby cells, maybe including the ones whose interaction with the actual cancer cells is creating problems.
Hard to get at all of the details, but it seems like potential good news all around. Of course, any time there's research that helps us understand lymphoma cells and their environment, it's good news.
Another piece of the puzzle. I trust that there are some smart people putting all of these pieces together.
Thursday, July 15, 2010
Dr. R mentions a couple of possible treatments, and suddenly they're in the news a whole bunch. (Well, maybe not "suddenly" -- there's been a steady stream of stuff on Treanda for a while, and I hadn't even considered Velcade a possibility, so it might have been there anyway and I just didn't see it.)
Anyway, more on Velcade. In the July issue of Leukemia and Lymphoma, there's an article on results from a research study on Velcade that discusses how exactly it works. The article focuses on research on Mantle Cell Lymphoma, a more aggressive variety of NHL, but it may very well explain something about how it works for Follicular, too.
Velcade (also known as bortezomib) is a proteasome inhibitor. As I explained before, this proteasomes are normal parts of cells that act as recyclers. As proteins break down in a cell, the proteasomes clean them up. When Velcade inhibits this from happening, all that junk backs up and the cell dies. Velcade causes this back-up in cancer cells in particular.
That's the basics. It's a pretty complicated process, and the research described in the article gets at how this process actually works. The research identified the particular proteins that were involved in all of this -- which ones contribute to the cancer cell growing, and which ones contribute to it dying. So this is all part of that "personalized medicine" trend in cancer research that will basically result in a big catalogue of stuff to look for in an individual patients' cells, with information about what it means. (Seeing certain proteins in a cell will give a clue as to whether or not Velcade will be effective.)
Velcade, as I understand it, is the first of what will ultimately be a whole class of proteasome inhibitor drugs. I don't know what else is in development that would relevant for fNHL, but, as the press release linked above says, the research is "exciting" to a lot of folks in the cancer research world.
Monday, July 12, 2010
For the most part, Follicular NHL treatments follow a kind of risk/reward curve similar to stocks and bonds: more risk, greater potential for rewards. Harsher, more toxic treatment, better potential for a long remission. Bendamustine/Treanda is considered to be on the same part of that reward curve as CHOP: good chance for lasting remission. However, it's closer to the happy end of the risk curve: not nearly the same kind of toxicity as CHOP, as measured by things like nausea and hair loss.
Last month, a Japanese cancer jounral published the results of a phase 2 clinical trial of Bendamustine as a single agent (no Rituxin or other drugs taken with it, which is what Dr. R is considering for me). Results of the trial were pretty good, with about 90% of fNHL patients responding, with fairly minimal side effects.
Interesting that this was a phase 2 trial, given its success in the U.S. and Eurpoe, but I suppose each country has to do its own investigating before it can give approval to a treatment. Still, the results match up very well with those that I have read from studeis in our own and other countries. Seems like a good option at some point. Whether it will be my next option remains to be seen....
Friday, July 9, 2010
John has been very interested in the military lately, which is what made this one stand out. I'm not as into it as him, but I'll admit, some days I feel like I need to be a warrior.
You can begin today to transform yourself into a warrior. No, you don't have to go on any training runs or scale 8- foot obstacles or crawl through the mud with bullets flying around your head (although if you're currently in treatment, you may feel like you've done all those things at the ends of some days!).
Begin by thinking about the brave young men and women who defend our country and put their lives on the line every day for total strangers around the world and how they go about preparing for war. We can take our lessons from them.
The first thing warriors do is study the enemy. They learn all that they can about the enemy, especially his weaknesses. They know that knowledge is power, and they arm themselves with as much intelligence as can be gathered.
General Patton studied the battle strategies of Napoleon. Warriors study known and proven tactics. Those basic tactics and strategies always provide the foundation of the battle plans, even though many improvements and additions have been made in the years since their development.
Warriors gather the best weapons available to them, then sharpen, clean and oil those weapons. A soldier knows that his weapon is his best friend.
A warrior trains constantly, both physically and mentally. He focuses on good nutrition and staying hydrated at all times.
A warrior maintains a positive attitude and focus at all times. He keeps his eyes on the victory to come.
Warriors gather a coalition of allies. They surround themselves with the strongest, bravest, most intelligent comrades-in-arms, and they bond tightly to one another.
And when they have done all that they can humanly do to prepare for battle, warriors seek divine guidance. They pray for protection, safety, leadership, victory and miracles.
As survivors and caregivers facing cancer, how can we do any less? Each of us must develop a warrior mentality.
Study the enemy. Learn about your disease and what its weaknesses are, and learn about the known and proven tactics (treatments) that have stopped its advance, brought it under control or defeated it in the past.
Gather your weapons and make sure they are sharp and clean. Line up and schedule whatever tests and treatments your treatment team has recommended, and then show up for them; ask about clinical trials and insist on the best, most cutting-edge treatments available; travel if necessary.
Train physically and mentally every day. You may not be able to run or do sit- ups, but you can move around your house or even your bedroom or even just in your bed! Do whatever you can to stretch your muscles, get your blood circulating -- power up! Eat only the finest, freshest foods available (eat a mostly plant-based diet, organic whenever possible). Drink water until your urine runs clear. Then meditate, practice deep breathing, calm yourself with soft music, recorded nature sounds, meditation tapes or CDs. Close your eyes and visualize victory. Do this as many times a day as you possibly can. Fall asleep each night with your "victory vision" clearly in mind.
Maintain a positive focus at all times. There will be days when this seems impossible, but be a warrior! Bring your focus back to where it's supposed to be. Keep your eyes on the prize. See only victory.
Gather a coalition of allies. Put your treatment in the hands of medical professionals you trust, and then trust them! Surround yourself with friends and family members who will help you maintain your positive focus. Have one family member or friend who can "run interference" for you by asking anyone who can't be positive around you not to call or visit for the time being. Place yourself in the middle of a circle of healers and loved ones. Close your eyes often and visualize yourself in the middle of this powerful, protective circle.
And when you have done all that you can humanly do to prepare for battle, seek divine guidance. Pray for protection and safety, pray for strength and courage, pray for victory and pray for miracles.
The Cancer Warrior's Prayer (based on The Marine Prayer)
Almighty Father, whose command is over all and whose love never fails, make me aware of Thy presence and obedient to Thy will. Keep me true to my best self, guarding and helping me to live so that I can face myself, my loved ones and Thee without self-pity or fear. Give me the will to do the healing work of a cancer warrior and to accept my treatments with confidence and resolve. Grant me the courage to accept the challenges of each day. If I am inclined to doubt, steady my faith; if I am tempted to give up, make me strong to resist. Guide me with the light of truth and grant me wisdom by which I may understand the answer to my prayer.~Amen~
Monday, July 5, 2010
He's getting close to his Pan Mass Challenge ride, where he'll raise money for cancer research by biking for many, many miles over 2 days. There is still time to donate by going to his PMC web site.
Strudel has been training for the Pan Mass Challenge, too. She won't be able to ride the whole way, but she told me she plans to meet my brother on her bike, near the "elbow" of the Cape, and serve as a pacer, making sure he and his team stay at the proper speed to finish. Strudel has been working with her own bike racing team; you can check them out here. In the video, one of her teammates is riding about as fast as my brother will be.
Good luck, brother! Make sure Strudel drinks lots of water!