So far so good. This is a couple of hours after receiving the infusion of STA-9090, without any anti-nausea medication. The sun is bright. It's a beautiful Boston Spring day. I feel good (well, mostly good).
Monday, May 3, 2010
First day of STA-9090
So far so good. This is a couple of hours after receiving the infusion of STA-9090, without any anti-nausea medication. The sun is bright. It's a beautiful Boston Spring day. I feel good (well, mostly good).
Tuesday, April 27, 2010
Monday, April 26, 2010
Gaining Ground
I don't pay too much attention to anniversaries, but I guess I must say something about today's date. It was ten years ago that I took the first step in this looooooooooooong marathon.
My doctors say that I have been a "good sport". My family and friends say that I have been "brave". Even though their words lift me high, I always feel that I don't deserve so much praise.
Maybe sometimes I am a good sport. Maybe, but it is only because I have no other choice. What can I do instead of accepting, with a smile, more surgeries, more trials, more chemo... I am not brave. I only pretend to be, hoping to fool myself. I really have no other choice.
Optimistic is what I have been in the past ten years. Once, I asked Dr. Morgan if there is a light at the end of the tunnel and he answered yes. That's what I needed to hear. No matter what, I continue to believe in my oncologist's words.
All I have to do is to continue gaining ground. Many of the targeted drugs and cancer vaccines used today to treat several cancers did not exist ten years ago. Today, we are closer to the day scientists find the drug that will cure, or at least delay, the growth of sarcomas like mine.
Coincidentally, I also signed a new protocol today. The next Phase One trial will be STA-9090. This drug will target a protein called HSP90. As it is explained in the consent form I signed today: "HSP90 is a protein that helps some molecules inside your cells to have the right shape (conformation). By stopping it's activity, those molecules never get to have the right structure to be functional, and they are destroyed. We believe that if we stop the activity of HSP90, the rapidly dividing cells that are in your tumor(s), will slow down since their proteins will not be functional without the help of HSP90..."
...and if this drug does not work, there will be more (one that targets CDK4, for example). Gaining ground, step by step, is what I hope to continue to do in the next ten years.
My doctors say that I have been a "good sport". My family and friends say that I have been "brave". Even though their words lift me high, I always feel that I don't deserve so much praise.
Maybe sometimes I am a good sport. Maybe, but it is only because I have no other choice. What can I do instead of accepting, with a smile, more surgeries, more trials, more chemo... I am not brave. I only pretend to be, hoping to fool myself. I really have no other choice.
Optimistic is what I have been in the past ten years. Once, I asked Dr. Morgan if there is a light at the end of the tunnel and he answered yes. That's what I needed to hear. No matter what, I continue to believe in my oncologist's words.
All I have to do is to continue gaining ground. Many of the targeted drugs and cancer vaccines used today to treat several cancers did not exist ten years ago. Today, we are closer to the day scientists find the drug that will cure, or at least delay, the growth of sarcomas like mine.
Coincidentally, I also signed a new protocol today. The next Phase One trial will be STA-9090. This drug will target a protein called HSP90. As it is explained in the consent form I signed today: "HSP90 is a protein that helps some molecules inside your cells to have the right shape (conformation). By stopping it's activity, those molecules never get to have the right structure to be functional, and they are destroyed. We believe that if we stop the activity of HSP90, the rapidly dividing cells that are in your tumor(s), will slow down since their proteins will not be functional without the help of HSP90..."
...and if this drug does not work, there will be more (one that targets CDK4, for example). Gaining ground, step by step, is what I hope to continue to do in the next ten years.
Friday, April 23, 2010
hsp90 inhibitor
We have a new plan of attack. A Phase One trial by a Massachusetts drug company called Syntha. STA-9090 is an inhibitor of Heat Shock Protein (hsp)90. If you want to learn more about this drug, click here
I will tell you more next week, after I do all the preliminary tests at Dana-Farber.
I will tell you more next week, after I do all the preliminary tests at Dana-Farber.
Saturday, April 10, 2010
jet lag and bad news
I had a wonderful time in Macau. The eleven days I spent there flew but my parents and friends managed to get my batteries completely recharged. A good thing since I needed to be in a good mood to hear the news Dr. Keohan had to give me yesterday:
I have to get you off the trial, the tumors grew ...
The fact that I was experiencing a serious case of jet lag, when my NY oncologist was delivering the bad news, helped. There is a 12 hour difference between Macau and NY, so I was half asleep and all I could say was:
It is OK, we will try another trial.
Next week I am going to see my doctors in Boston, including my surgeon. Meanwhile the New York team will discuss my case on their weekly Wednesday meeting and see if they have any drug for me.
So, that's it for R7112.
I have to get you off the trial, the tumors grew ...
The fact that I was experiencing a serious case of jet lag, when my NY oncologist was delivering the bad news, helped. There is a 12 hour difference between Macau and NY, so I was half asleep and all I could say was:
It is OK, we will try another trial.
Next week I am going to see my doctors in Boston, including my surgeon. Meanwhile the New York team will discuss my case on their weekly Wednesday meeting and see if they have any drug for me.
So, that's it for R7112.
Tuesday, March 30, 2010
Home
My last cycle of R7112 went so well (apart from feeling dizzy for 3 days) that last Wednesday I got in an airplane and came to the other side of the world. Yes, it is true, I am in Macau, my hometown.
Saturday, March 13, 2010
The betrayal of my body
<< rewind
stop
It is March 2000. I am running along the Pearl River delta. I run slow and stop frequently. Zé pulls my arm forcing me to keep running. But I can't keep up with his pace. I convince him to keep going. What is happening to me? First my slim waist mysteriously disappears and now I can't run?
The truth is that for the past eight months, I had been fabricating explanations for the fact that I looked four months pregnant.
Initially I blamed it all on the chi pa pau and chi cheong fan (pork rib sandwiches and rice noodles) that came along with my new stress free (boring), sedentary, 9 to 5 government job. I no longer had to run around with a microphone, run back to the newsroom, run to the editing room, run to the studio... Naturally I was now a fat government worker.
Most 3o something women have a "tire" around their waist. Why couldn't I have one too? It was my turn. That´s what I though when people stopped me in the street to ask if I was pregnant. I also started thinking that someone had started a rumor that I was pregnant. Rumors flourished well in the small Portuguese community of Macau.
To get back to my adolescent body I joined Ana's step and aqua aerobics classes. And I came up with a new theory to explain the changes in my body. It was all abdominal muscle and not fat. When I touched my belly it felt hard. So it was not fat, I was sure of that. It almost felt like Ana's muscles. Not bad since my instructor and friend Ana is a triathlon athlete. But all that exercise was not working. My body was simply not responding to any form of exercise. My belly continued to increase. Frustrated I canceled my membership at Hyat's Health Club.
I also had invented an explanation for feeling tired all the time. I was working at the Macau Handover Ceremony Coordination Office and there was a lot to do in the weeks that preceded the transfer of sovereignty of Macau from Portugal to China... and after the handover when the "rules" changed and I had nothing to do at work I interpreted my permanent state of exhaustion as a mild depression...
... my list of explanations for what today seems obviuos went on and on. But I was healthy and luckly everyone in my family had also been always heatlhy. I had no experience with any sort of illness. And I believed that I would remain that way forever. I really had no way of guessing that in a month, in April 2000, a 6 kg (12 pounds) tumor would be discovered in my belly.
stop
It is March 2000. I am running along the Pearl River delta. I run slow and stop frequently. Zé pulls my arm forcing me to keep running. But I can't keep up with his pace. I convince him to keep going. What is happening to me? First my slim waist mysteriously disappears and now I can't run?
The truth is that for the past eight months, I had been fabricating explanations for the fact that I looked four months pregnant.
Initially I blamed it all on the chi pa pau and chi cheong fan (pork rib sandwiches and rice noodles) that came along with my new stress free (boring), sedentary, 9 to 5 government job. I no longer had to run around with a microphone, run back to the newsroom, run to the editing room, run to the studio... Naturally I was now a fat government worker.
Most 3o something women have a "tire" around their waist. Why couldn't I have one too? It was my turn. That´s what I though when people stopped me in the street to ask if I was pregnant. I also started thinking that someone had started a rumor that I was pregnant. Rumors flourished well in the small Portuguese community of Macau.
To get back to my adolescent body I joined Ana's step and aqua aerobics classes. And I came up with a new theory to explain the changes in my body. It was all abdominal muscle and not fat. When I touched my belly it felt hard. So it was not fat, I was sure of that. It almost felt like Ana's muscles. Not bad since my instructor and friend Ana is a triathlon athlete. But all that exercise was not working. My body was simply not responding to any form of exercise. My belly continued to increase. Frustrated I canceled my membership at Hyat's Health Club.
I also had invented an explanation for feeling tired all the time. I was working at the Macau Handover Ceremony Coordination Office and there was a lot to do in the weeks that preceded the transfer of sovereignty of Macau from Portugal to China... and after the handover when the "rules" changed and I had nothing to do at work I interpreted my permanent state of exhaustion as a mild depression...
... my list of explanations for what today seems obviuos went on and on. But I was healthy and luckly everyone in my family had also been always heatlhy. I had no experience with any sort of illness. And I believed that I would remain that way forever. I really had no way of guessing that in a month, in April 2000, a 6 kg (12 pounds) tumor would be discovered in my belly.
Wednesday, March 3, 2010
Spring and Winter
I have to admit that this protocol I am on has one great advantage:
Every 14 days it feels like Spring to me.
As you might suspect from my long absences from this blog, this trial has a crazy effect on me. For 14 days (10 days on the R7112 pills and 4 to get them out of my system) I feel miserable and exhausted. But then, suddenly it feels like Spring. Rays of happiness and optimism take over me and I feel like whistling and jumping.
Yes, it is snowing right now. But I can't hear the silence of snow. Do you hear me singing with the birds?
This quote of Anne Bradstreet, the first woman to be published in Colonial America, summarizes that I am trying to say: "If we had no winter, the spring would not be so pleasant; if we did not sometimes taste of adversity, prosperity would not be so welcome."
Every 14 days it feels like Spring to me.
As you might suspect from my long absences from this blog, this trial has a crazy effect on me. For 14 days (10 days on the R7112 pills and 4 to get them out of my system) I feel miserable and exhausted. But then, suddenly it feels like Spring. Rays of happiness and optimism take over me and I feel like whistling and jumping.
Yes, it is snowing right now. But I can't hear the silence of snow. Do you hear me singing with the birds?
This quote of Anne Bradstreet, the first woman to be published in Colonial America, summarizes that I am trying to say: "If we had no winter, the spring would not be so pleasant; if we did not sometimes taste of adversity, prosperity would not be so welcome."
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