Wednesday, April 29, 2009

Closing Time

It is almost closing time at the CRC. Maura (my dear research nurse) will do the last blood draw at 7h55. I'll be back tomorrow.

As Zé already mentioned, it has been a good "first day." Maura also noticed that I didn't ask for Zofran. And on the first day I ALWAYS need some anti-nausea.

For those of you who are curious, this drug "inhibits a key protein called PI3-kinase that stimulates cancer cells to grow." I have not tried anything like it so we are all curious to know if it will work on me.

My daily dose is 130 mg, 65 mg in the morning and 65 mg in the afternoon. I start it with the same hope I have had before for other trials.

As I always tell Dr. Morgan and Dr. Shapiro, one of them will work.


Came to meet Elsa at lunch time. She started a new drug today.

Hard to believe though, since she is feeling great. Could not tell that it was her first day. Usually first days are horrible. Today, though, Tarik came by and we all talked about Alcacer Kibir and Sebastianism and the politics and history of colonial and post-colonial Africa.

She has a four hour break now so we are going to enjoy the sunshine for a while.

from the CRC at Dana-Farber

I just took my first two pills of GDC-0941. Knock on wood.

study buddies

Click on the photo and you will see all the trials I have been on, including the one I start today.

Carolyn is a Research Nurse here at the CRC (Clinical Research Center) and she makes the mice to bring us (lab rats) luck with our trials. Maya loves them and whenever she comes with me to the CRC she takes one home. She says she is collecting Carolyn's study buddies.

I am collecting clinical trials. Today I start my eleventh.

Sunday, April 26, 2009

It was nine years ago

During the Summer of 1999, while living in Macau, I noticed that my belly was getting bigger. Deep inside, a voice was telling me to see a doctor, but I resisted listening to my body, thinking it would be silly to run up to Conde S. Januário Hospital, just because I was getting fat. On the streets, women were asking me if I was pregnant. After a while, this persistent inquiry began to annoy me, so I began to reply, rather curtly, that I wasn't. I was 34 years old and had always been healthy. It did not cross my mind that anything could be wrong with me.

When I finally crossed S. Francisco Garden and walked up the stairs that led me to the hospital, it was April 26th 2000; ten months after my initial symptoms began. In one hand I carried medical forms. They were for my doctor to sign so that I could join that year's Dragon Boat Races. Glued to one of my fingers I had a yellow post-it note. It read: "mostra a barriga" (show belly). I had begun to feel some discomfort after meals, so I wanted to make sure that I didn't forget to tell my doctor about it

So, during lunch break, I head to the hospital.

I get there at 1:00 pm and find a full waiting room. I am starving. In fact, everyone looks hungry, but this is the waiting room at Macau's public hospital, so it is not unusual. It seems everyone is waiting for Dr.Paula Pimenta.

I's 2h00 and there are still a lot more people in the waiting room than it would be expected. I know I am the last one on her list. I start to look at my watch, inpatient and hungry. I'm worried because soon I have to return to work.

2h45, it's my turn. The doctor also looks tired and hungry.

me- When are you going to have lunch?

Dr.P- After I see you.

me- I´ll be quick, actually I just want you to sign these forms to give me permission to join the dragon boat competition.

Dr.P (smiling)- After I examine you.

me- OK. Oh, I almost forgot. I want to ask you to see what is going on with my belly. It just keeps increasing. And it feels hard. Everyone keeps asking me if I am pregnant.

Dr.P (examines with hands)- It is enlarged for your size. Came back tomorrow, I´ll be in the Emergency Room, meet me and we will do an ultrasound.

me- All right. I´ll see you tomorrow. Can you sign my forms?

Dr.P (smiling)- Tomorrow. We need to see why your belly is like that first.

That was the first step in the long road I have been on; now for exactly nine years.

Saturday, April 25, 2009


Has the period between treatments gone on too long? A certain amount of anxiety is beginning to seep through the wall of enthusiasm. As always, there is the hope, the expectation, that this upcoming drug will be the one to beat the tumors growing inside. So as the first day of the new treatment approaches, mood swings become more frequent and extra care is necessary to ensure that spirits remain upbeat. At this time of the year, there is the added weight of the anniversary of the first diagnosis, nine years ago, so naturally, there is added significance to all efforts to fight this unending cycle of tumor removal and re-growth. Somewhere in the pipeline of scientific discoveries lies the insight that will cap the tremendous effort to beat cancer. What will it take? When will it happen? That is the always present thought. If only there was a way to speed it up.

Alas, there is the experience of nine years battling cancer. That makes it easier to endure, not because it is any easier dealing with cancer, but because we have learned to face it better. Hope remains the insurmountable force that drives us forward.

posted by Zé

Wednesday, April 22, 2009

I did a blood test yesterday and my hemoglobin is 12.4

twelve point four

no wonder I have been feeling so good (and away from the computer). I'll start my trial, one of the Genentech studies, next Wednesday.

And I also gained weight, I am 40 kilos (almost 90 pounds).

Friday, April 17, 2009

Meet Zazá

Zazá joined my Boston Marathon Jimmy Fund Team yesterday and we already raised $210 dolars. We have shared laughs and dreams since we were four years old. This time we are dreaming of raising a lot of money for cancer research.

Sometimes, though, we disagree. She says that Nothing Sexy About Cancer will not look good on our t-shirts. She even promised to walk the 5 miles dressed like this if I change the name of our team. What do you think? ;)

Thursday, April 16, 2009

salto à corda

Dear Genentech, here is proof that my hemoglobin is up.
Yesterday, Filipa filmed and edited this on iMovie.
(Genentech is the pharmaceutical company that manufactures two trials that I am interested in, the inhibitor of the IAP trial and the PI3-Kinase inhibitor trial)

Wednesday, April 15, 2009

Walk with me on Sunday, Sep 13

I just registered for the Boston Marathon Jimmy Fund Walk. My team is called: Nothing Sexy About Cancer. If you want to join me, click here.

Tuesday, April 14, 2009

Confessions of a Vampire

Yesterday I received two units of blood and today I woke up feeling like I can conquer the world. I have a feeling that I got blood from two athletes, a speed runner and a high jumper.
Thank you to all the blood donors of the world, you give us life.

Thursday, April 9, 2009

P.S. I forgot to tell you the good news. I did a CT scan last week and it showed that the tumors are still growing slowly. The monsters are still small

Wednesday, April 8, 2009

por um décimo

I could not start the trial yesterday. My hemoglobin was 8.9 and for the GDC-0152 trial, the drug company wants it to be at least 9.0 on the first day of treatment (it was 9.0 when I signed the protocol). On Monday I´ll get a blood transfusion and we will decide which is the best trial, based on the results of my blood work. When I first signed the other protocol, the GDC-0941, I was not eligible because for that trial, the hemoglobin had to be at least ten.

These numbers are not realistic, don´t the drug companies know that we all run on low blood counts?

Saturday, April 4, 2009

É Isso Aí

Friday, April 3, 2009

"Ironworkers spray paint names of young cancer patients onto the beams of the Yawkey Center going up at the Dana-Farber Cancer Institute." Link for the Boston Globe article.

beam of hope

I went with my mom and dad to Boston. I signed the beam of hope.
I wrote Thank you for taking care of my mom Dana Farber.
They will put it in the garage of the new building.

Do you know what else I did? I helped Maura take blood out of my mom. She put stickers and wires too! She did it to see how my mom's heart was instead of a stetescope. My mom's heart was awesome! I helped David do a lung test on my mom. The lines on the computer looked cool!

Thursday, April 2, 2009

The inhibitor of the inhibitor of apoptosis

Forget all I told you about the PI3-Kinase inhibitor trial. Today I signed a different protocol. My next alphabet soup will have the following letters and numbers:
This drug is supposed to limit the activity of proteins found in our bodies that prevent apoptosis (programmed cell death). Soon we will see if GDC-0152, an IAP protein antagonist is the ONE that will make my tumors collapse. We hope so.
The new trial is going on at the Dana-Farber. I start on Tuesday, the 7th of April and I get to stay overnight at the Brigham Hotel ;) for observation.

Wednesday, April 1, 2009

PI3-Kinase inhibitor

I signed a new protocol yesterday. If I am eligible after all the screening tests I start a drug called GDC-0941 on Monday. In the laboratory, this drug "inhibits a key protein called PI3-kinase that stimulates cancer cells to grow." This is a phase-one, dose-escalation study that has been going on for about a year. This means that I will be getting a higher dose than the first participants. Hopefully this is the one that will slow the growth of the stubborn tumors ;-)