Miracle Drug Olaparib

My heart is just bursting with mahalo. Thank you so much to everyone who donated to Jonas fundraiser! I will update you and let you know how he does once the race is over :) Of course he is going to kick butt. This guy is one of the most competitive people I know (in a good way, not in a "jerk" way). He even tries to beat the "arrival time" on his car GPS!

I was listening to the NYT Audio Digest like I do everyday, and they mentioned a book that I thought would be great reading for anyone, not just breast cancer fighters, that need to be inspired. It is called Ice Bound: A Doctor's Incredible Battle for Survival at the South Pole.

Basically, this female doctor going through this horrible divorce volunteers to be a doctor at the South Pole over winter. While she is there, she discovers a lump, does a SELF BIOPSY (really hard core), and finds out she has a really aggressive fast growing cancer. And she can't leave. No flights can get in or out of the South Pole during winter. Not exactly the situation that you want to find yourself in.


When I was diagnosed with my aggressive fast growing cancer, the doctors didn't even want to wait 10 days for me to freeze embryos. She has to wait 6 months with no surgery/chemo/hormonal therapy/herceptin/nothing. So she looks at all the rudimentary tools she has (rudimentary in relation to breast cancer) and she begins to treat herself!

It is only 1 cent used (of course shipping is $4) on Amazon, so treat yourself! And for those non-readers, you can get the DVD staring Susan Sarandon;)

Breaking News!

There is a pill for breast cancer if you are genetically predisposed. Yes! A pill. If you test positive for BRCA1 or BRCA2, you can take a PARP inhibitor called olaparib that shrinks inoperable tumors! And it doesn't make you sick! Here is the article if you want to find out exactly how it works. And here is the original study that appeared in the New England Journal of Medicine three days ago. Here is how to enroll in the clinical study.

PS: Olaparib did not help 41 other patients with tumors that were not associated with BRCA mutations. But they are working on it! Any breakthrough is a breakthrough for everyone.

Christmas in June! and 100 degrees . . .

I have received so many sweet gifts and things recently. My friends and family are so generous to me!

A girlfriend of mine, Emily, volunteers for LiveStrong, Lance's organization, and sent me tons of material from them. I can't wait to go through it because Lance's case has been such and inspiration for me (and my Dad!).

Other girlfriends from college sent me a Big Box filled with Georgetown clothing and pencils and mugs and pint glasses. It was so wonderful and reminded me so much of school when your biggest worry was your grades and Dip Ball.

When I was in Hawaii, family friends, Paul and Anne, gave me a gift certificate to amazon which I spent on vegan cook books and a book that Nani, my friend from middle school, suggested to me. It is called Anti-Cancer.

After undergoing chemotherapy and surgery for brain cancer, Servan-Schreiber, a clinical professor of psychiatry at the University of Pittsburgh School of Medicine, asked his oncologist if any lifestyle changes would prevent a relapse; the answer was no. Certain this was wrong, Servan-Schreiber spent months researching a mass of scientific data on natural defenses against cancer.

Really looking forward to it getting here!

Being 29, it seems like everyone and their mother is getting engaged, married, or popping out children, and I am getting emails about a lot of gift registries. I wanted to give a shout out to a really cool service called Live for the Challenge, that is a MEDICAL GIFT REGISTRY. Basically, the cancer fighter sets it up (or their family and friends do), and their supporters can help take the edge off of life by getting them gifts they want.

I mentioned LiveStrong above, and my friend/ex boss from my old life at Meltwater is doing a 100 mile LiveStrong Bike Race in San Jose next month to raise money for cancer in my name. Having gone on a Camp NorWester Little Big Trip with Lisa Jardine biking around, I know exactly how tough that is! 50 miles can be brutal depnding on the terrain. If you want to donate to Jonas' effort to raise awareness and support cancer and boobs and me, click here!


Luis and I will be house hunting tomorrow in Cedar Hill, and pretty suburb of Dallas (and you have no idea how hard it is to use the words pretty, suburb, and Dallas all in the same sentence). Will post the houses that we like (if any!)

Herceptin Magic

Hope you all had a happy weekend! Luis and I went house hunting yesterday and found a house that we can't afford. We also looked at a lot of upscale family friendly neighborhoods that I thought I would have liked, and they were way too Texan for me. They all had the American Flag, the Texan Flag, and the Texas Star nailed to their house. I am sure in November there would have been tons of McCain/Palin signs everywhere. I hate sounding so homgenous, but I need to move to a place where neighborhood parties aren't going to be torture.

I have gotten lots of recommendations for which art class I should take. I am leaning toward Quickdraw (thanks for your thoughts, Coral), but as my doctor said I am going to be on this chemo for longer than the typical 4 cycles, and it is already making me so tired, I need to check the schedule to make sure that it isn't in the morning.

For all HER2+ cancer patients out there I found a really interesting article where Herceptin has actually been documented in the lab to FLIP you from ER/PR- to ER/PR+!

For those of you who aren't well versed in breast cancer, this is HUGE!! Usually what happens is that you get a core biopsy, they take out a piece of the tumor, examine it, and say, okay your tumor is like this, blah blah blah. In my case, they took it out and said you are ER- PR- and HER2+. Which means I have one weapon, herceptin, in my arsenal beyond surgery and chemo.

If would have been ER+ or PR+, then I could have used hormonal therapy. The more pluses, the more "weapons" you have. But, I don't.

However, this research is showing that once you bombard the tumor with Herceptin, it can potential flip from not feeding off of estrogen to feeding off of estrogen. Which is amazing because that means that you CAN fight it with hormonal therapy! It has changed the tumor completely and I am not just waiting around for Herceptin to become ineffective again.

They reason why this is very difficult to monitor is because once the tumor is removed, there usually isn't anything to biopsy or check, and why on earth would you think that the chemo would make the tumor change "personalities" anyway?

The interesting thing is that I still have a tumor in my neck which could be checked to see if my tumor has become ER+/PR+. If it shrinks away, it can't, but I want to show my doctor the research and see if he would be interested on putting me on hormonal therapy anyway on the assumption that it could help.

The only challenge I see is the insurance company not wanting to pay for a therapy that "could" help my tumor. We would need to biopsy something to see if, in fact, the tumor has changed before they would be willing to pay for it. The human trial is now recruiting in Ann Arbor.

Okay, enough Med Speak. Gonna go watch the market crash for a while and smile at my short positions.

Here is a great video on the PREVENTION of breast cancer, and what woman can do to stop themselves from getting cancer in the first place, instead of trying to backpedaled like me! I am taking all the supplements he suggests, and my mother has gotten thermal imaging instead of mammograms before in New Zealand and it works very well!

Art Classes?

CORRECTION REQUIRED!

Two blog posts ago, I wrote:

So, although I am sitting at home and not working, I do feel like I don't have much time. Between feeling exhausted from chemo, or running around getting my blood checked, the days just fly by.

When I wrote "I do feel like I don't have much time," I meant "I feel like I don't have enough time to do all the things I want to do." The way I wrote it has been construed by a couple of people to mean, "My time on earth is short," which is DEFINITELY NOT what I wanted to say. So I am so sorry for the confusion; I am not sitting around pondering the likelihood of my imminent death ;)

In fact I am barely thinking of my cancer at all! Too many cool things to do! I am thinking about taking an art course! I am sooooo not artistic, but I think it would be healthy for me to have multiple outlets for frustration, thought, etc. These are some of the courses I am considering taking!

- CREATIVE CLAY SCULPTING
- QUICKDRAW (Sketching)
- BATIKS AND OTHER RESIST APPLICATIONS
- GLASS BEADMAKING
- JEWELRY BASICS
- THE ART OF MOSAIC
- BEGINNING PAINTING
- OIL PAINTING FROM PHOTOGRAPHS FOR BEGINNERS
- OIL PAINTING FROM LIFE
- ABSTRACT PAINTING
- STONE SCULPTING

Would love to hear thoughts if any readers have taken a course like those above. . . I am really interested in quickdraw, jewelry basics, and oil painting from photographs. I saw my art teacher, Cindy Yarawamai, in Hawaii and she really insprired me to get creative.

Luis shaved my head this morning. I had this fuzzy sparse orangy hair that remained afater a lot of it fall out when I started chemo again. I looked like I had mange on my head. Now it looks like I chose this hairstyle vs I am sick.

Lifehacker inspires some organization in my life

The doorbell rang this afternoon and the UPS lady was delivering more Nespresso capsules for my husbands espresso maker. I can't wait until I am drinking coffee again! I know I can't do a cup a day like I did, but I love afternoon coffees with my husband. He used to make me a coffee every single day when I woke up :)

Anyway, the UPS lady, Vilma, asked me if I had breast cancer (big bald head a huge clue), and she told me that she also had breast cancer, and just finished radiation. She had her treatment at Texas Cancer Treatment Clinic in Las Colinas. I am looking for another cancer clinic that is close by, because you have to go to radiation EVERY DAY for 7 weeks (minus weekends). And as much as I love Shere Khan, I am NOT driving to Allen every day.

I saw my surgeon today because there is this tendon in my arm that is VERY VERY tight and not getting looser. If I raise my arm, instead of having a smooth armpit, this tendon bisects my armpit and really sticks out. Gonna need some physical therapy, which my dad believes is hooey, but as my insurance is paying for it and I would like to lift my arm without feeling pain into my wrist, I am gonna do it. Here is a picture of the specific tendon/muscle/ligament (whatever, right?) that is bothering me.

So, although I am sitting at home and not working, I do feel like I don't have much time. Between feeling exhausted from chemo, or running around getting my blood checked, the days just fly by. Now that I have my iphone, I am creating several lists that I can add to at a moments notice. I got these ideas from the site LifeHacker, who posts articles on how to make your life easier!

List # 1 “Things I Want”

Every year, people I know ask me what I want for my birthday, or for Christmas, or just because they love giving me gifts (that last would would be nice, huh?). Usually, I have no idea what to tell them. That’s why I’ve started keeping a list of things I want - every time I hear about or come across something I’d like to have, no matter how big or small, it goes on my list.

If I get it, or don’t want it anymore, it goes away. It’s simple, but having this list gives me a running tally of stuff I actually want, so I’m not just telling my family and friends “anything’s great, seriously…” and then pretending to like what I get.

List # 2 “Gift Ideas”

This one’s on the opposite side of gift-giving. If I think of something that would be a great gift for a person I might some day buy a gift, I write down something like “Mom - Rollerblades.” That way, when my Mom’s birthday comes up and I realize I haven’t been paying attention for a whole year, I’ve got some backup ideas. This one, more than all the other lists here, has come in handy over and over in my life.

List # 3 “Got a Minute?”

We all have things that we’d like to do, but that aren’t required of us and that have no consequences whether we do them or not. I keep those things in my “Got a Minute?” list. If I have some free time with absolutely nothing to do, I’ll take a stab at something on my list. If they don’t get done, it’s not a big deal - it’s full of things I’d like to do when there’s nothing better or more important to do.

List # 4 “Watch, Read, Listen”

Another critical one for me, as a music and movie junkie. If a movie gets suggested to me, or I’m told I absolutely have to hear a particular band, they go on the list. If I have some time, I’ll go through the bands and see if there’s anything good. If I’m in need of another book, I try to pull one from my list rather than just reading whatever’s nearby. These lists are populated by friends, blogs, and any other source you can think of, and they’ve provided me with a ton of great movies, music, and books.

List # 5 BHAGs

BHAGs, or Big Hairy Audacious Goals, are an important thing for anyone to keep updated. These are goals that are way beyond what you think is possible, and are things you’re constantly keeping in mind with every decision or choice you make. For most, these goals are career-based, but they don’t have to be. What do you want to do, or be, or accomplish? Keeping this list handy will help keep you centered and focused in all things you do.

List # 6 Bucket List - very important!

We’ve all heard of bucket lists before - lists of things to do before you die. These might overlap with the BHAGs list, but not necessarily. For instance, “spend a night in jail” is proudly on my bucket list, but I wouldn’t exactly call that a goal. Keep a list of things you want to do - need to do before you die, both to help you get them done and to help you figure out what’s important. If “go to New Zealand” is on your bucket list, it’s worth saving for rather than taking a less-awesome trip somewhere else.

List # 7 “Don’t Forget”

This is a list for random, momentary stuff that you need to remember - but not remember forever. Things like “new guy at work is Jim” or “mail taxes” go on this list - review it periodically (I check mine every morning) and get rid of whatever is done or that you actually know. Hopefully, after a week, you’ll remember Jim’s name, and not need it on the list anymore.

List # 8 Great Ideas

Have a great idea for a business? Thought of a brilliant invention? Write it down. Maybe you won’t do anything with it, maybe you will - either way, having a list of your best ideas is a great way to both stimulate more great ideas, and to give you something to impress the boss with the next time he needs someone with great ideas.

List # 9 Grocery List

Obvious though it may sound, too many people still don’t keep a grocery list. Or, like me, they keep one and then leave it at home. The usefulness of an always-available and always-updated grocery list is twofold: one, it gives you a place to put “Orange Juice” when you run out of Orange Juice, thus keeping you from either not having it, or buying altogether too much because you couldn’t remember how much you have at home.

Two, it prevents you from buying things on impulse, or because you’re hungry - grocery shopping while hungry is dangerous. Keep a list, buy only the things on the list, and odds are you’ll eat both healthier and cheaper.

I’m a listing fanatic, keeping lists that far outnumber just the ones above. But those nine are the ones that have proven critical to saving me money, keeping me fresh with good ideas, and always knowing what to do or spend my money on in relation to what I want to be and do.

Back!

Sorry I have been gone so long! Being at home in Hawaii did not motivate me in the slightest to get online, and although I returned Tuesday morning I feel like this is the first day that I have relaxed.

I got back completely jetlagged and flew into a 4-day babysitting job for Neecy, which was fun in retrospect once you take out the 101 fever, the hacking cough, the tornadoes, and the day-long power outage (what do you do with a kid in a dark house with no TV or toys who is sick?).

Oh, and Neecy managed to deadbolt herself into her room (15 minutes of me on the roof scrambling around trying to open the windows from the outside of her room, while she screamed "I'm scared!" was also a blast). Obviously had I thought she could reach the deadbolt, I would have taken some percautions. But I didn't (sigh).

Luckily, Luis's managed to talk the hysterical two year old (no easy matter)into unlocking the deadbolt while I tried not to break my neck that was covered in tree branches and all sorts of crap that had blown on the room from the storms the other night. I knew he would be a wonderful father and be able to get me out of whatever crappy situation I have put myself in.

I had my my third chemo round on Thursday which thoroughly drained me, and you might be able to see why I am still exhausted (and glad I don't have kids yet).

So tomorrow I am running around playing catch up, trying to file taxes (been saying that for months), arguing with my insurance company, the typical. Today I went out to lunch with a girlfriend, which was delicious. I cheated a bit on the vegan thing (you have no idea how hard it is to find a vegetarian dish without cheese in Texas!), but thoroughly enjoyed myself at Bolsas, located in Oakcliff, south of Dallas.



Okay, so in Hawaii I went to two doctors that are left of the mainstream. One was a naturopath, and one was and Electro Accupuncturist (really interesting, but more on that in another post).

The naturopath recommended that I take certain supplements. I am going to detail some of them here, but I want you to know that they are tailored to me, my type of cancer, and my goals.

Coriolus Versicolor - I am taking two capsules of a mushroom extract daily that is used in Asia to treat cancer. The coriolus versicolor mushroom has shown antimicrobial, antiviral and antitumor properties, which have been attributed to a protein-bound polysaccharide called Polysaccharide K (PSK), also known as Krestin. In Japan, PSK is currently used as a cancer treatment, in conjunction with surgery, chemotherapy and/or radiation. Over 400 clinical studies have demonstrated that Coriolus polysaccharide extracts have immune modulating and anti-tumor effects. Yay! Even by-the-book MD Anderson has said the drug holds lots of promise.

Circuman - This is the orangey stuff in Tumeric. A researcher at MD Anderson published new research on teh spice. When mice with breast cancer were given curcumin alone, taxol (my kind of chemo) alone, curcumin and taxol, and then nothing at all, the two curcumin groups had the fewest number of metastases ot the longs. They have to give me steroids when I take taxotere( second generation of taxol), because it provokes an inflammatory response (most chemos do), which can lead to resistance. However, circumin inhibited taxol's inflammatory response by blocking NF-kappa B ( no clue what that is), which regulates inflamation, cell proliferating, and cell death (I want those cancer cells to die!).

Melatonin - Low levels of melatonin have been associated with breast cancer occurrence and development. Women who work predominantly at night and are exposed to light, which inhibits melatonin production and alters the circadian rhythm, have an increased risk of breast cancer development. So all you night owls, another reason to get some sleep! Melatonin demonstrates growth inhibitory effects by inducing differentiation (“normalizing” cancer cells)(Cos et al. 1996) as well directly inhibits breast cancer cell proliferation (Ram et al. 2000) and boosting the production of immune components, including natural killer cells (NK cells) that have an ability to kill metastasized cancer cells.

Wow. I am tired. I hear House calling to me from the TV room. Gonna lay down and vegetate.

Hawaii No Ka Oi!

Wow. Life is so good. Hawaii is just wonderful. If my husband were with me, I would just stay here the entire summer. I have spent TONS of time with my closest friend, Annie, and her birthday weekend gave me TONS of excuses to see her.

I got to go riding on my favorite horse Goldie and her parents' ranch. We also had a fabulous dinner at Macaroni Grill, which didn't exist yet when I was here in last. The Big Island is modernizing with more chain restaurants! Now if they would only bring Appleby's and the Golden Coral to the Big Island, my father would be in seventh heaven.

I have gotten more gutsy and have been feeling the lymph nodes on my neck. They are still there. I don't feel any change, which ticks me off a bit. I had been hoping that the Herceptin would just melt my tumor away, and it hasn't yet. Stupid cancer.

Nikita, my friend, asked a question in a comment relating do my track coach's experience in continuing getting the drug that was working for him even though he didn't qualify for the study anymore. He asked if there are any other ways of getting the drug for people who don't qualify anymore for a further phase of study.

My coach asked the organizers of the study if he could continue taking the drug, and the company said sure, but if for some reason Medicare would not cover the drug once it was up for approval, he had to sign a waiver saying he would pay cash for all the treatments he had received up to then. If course he couldn't stick his wife or himself with that kind of burden (tens of thousands of dollars, or maybe even hundreds), so he went to the VA. The VA agreed to pay to give it to him and pay for it. So he is getting the treatment, but you have to keep trying and keep asking. Don't give up if you are excluded from another phase of a study that was working for you.

I have gone to a naturopath in Kona. Considering that my cancer is such a challenge, and I have become more an more interested in how I eat affects the inner workings of my body, it seemed like the next logical step. Several family friends who have all had Stage IV cancer (lung, and colon) have SWORN by their naturopaths. So although Luis is fairly skeptical I have decided to start taking a massive amount of supplements. I am also exploring homeopathy. I have learned quite a lot, and it makes me very hopeful, and I will explain what I am taking and why in another post. Too much info, and I don't want to overwhelm my dear readers ;)