sailing against the wind

Not long ago, I wrote an email to Edward Kennedy. I was asking him not to forget "rare diseases" (in another word: sarcomas) in the language of the health care reform bill he introduced in Congress. I received an answer on August 17, on a day I could hardly lift my head due to nausea. In the email he explained to me that the details of the legislation have not been determined, however they were making progress and he was looking forward to working on the legislation with the new Congress. Since I was feeling so weak and sick my immediate thought was to wonder where did Ted Kennedy find the energy to continue fighting for his health care reform, which he called "the cause of my life", while fighting brain cancer. And now the lion of the senate is gone. His skills on negotiating and getting a bill through will be missed when Congress resumes after Labor Day. For us, in Massachusetts, after having him as our senator for forty seven years, it will feel strange .

On August 25th, cancer also claimed the life a friend of mine. Filipa lived less years than those that Kennedy was on the Senate. Like him she spent the last year sailing against the wind. When I am ready I want to write about the incredible 20 months she lived with lung cancer, how brave she was and how she chose where to die. But I am still in that phase when I just have a knot on my throat and no words are appropriate.

R7112 and Alencar

R7112, the trial I am on, did not work on Jose Alencar, the vice-president of Brazil. I am watching the news on the Brazilian channel, TV Globo, and they just announced that the experimental treatment Jose Alencar was on, at MD Anderson in Texas, did not work. The number of sarcoma tumors in his abdomen increased. But as always, 77 years old Alencar is not giving up. Click here for link to news in Portuguese.
I was hoping that this trial would work on Jose Alencar. His story is so similar to mine (except to the vice-presidency part ;)). He has been through numerous surgeries (two of them with my NY surgeon, Murray Brennan). Just as it happened with me, ET 743 (yondelis) did not work with him.
According to the news report, the next step for him will be conventional chemotherapy. Surgery is out of the question for now.

Eu fico a torcer para que tudo dê certo.

sniffing health problems

dear Gabby, don't miss this video on the National Geographic site.
It shows how some dogs are being trained to warn their owners of a hypoglycemic attack. It also shows another dog sniffing bladder cancer. What I have been saying about Baby is true ;)

Surgiu mais uma estrela no céu. Chama-se Filipa Delgado.

Filipa Delgado is the name of the new star on the celestial sphere.

hospital bed

When you live in the Kingdom of the Sick you learn not to make too many plans.... but after spending a week in NYC because of daily blood draws and EKG's, I was planning. All I wanted was a full week away from hospitals.... I was thinking of spending the last days of August near a Rhode Island beach..

but

here I am in a room at Sturdy, my local hospital. It is nothing serious. Yesterday, I developed a fever. It was just 101ºF but enough to make me run to the closest emergency room. That's how it is in our Kingdom, an insignificant fever is never insignificant. I was hospitalized yesterday and will only be released when the fever disappears. I better pretend that this hospital bed is a beach bed.

R7112

Dear friends,

As Maya has told you, I am feeling better. The nausea is gone and I am smiling again. Thanks for cheering me up (and for all the anti-nausea tips).
This time I will not pretend, the first days on the study were not so easy. It was hard to control the nausea, I did not eat, I got dehydrated, felt miserable and my weight dropped to 81 pounds.
The good news is that I take the drug for ten days and then I rest for seventeen days. Unaware of this "minor" detail, I was suffering just from thinking that I would have to take the five pills (250mg each) everyday for months. So imagine how I felt when I realized that I was starting a break on Wednesday.
Now, that I entered the resting period of the study, I have to recuperate the weight I lost. Today we had Dim Sum (Yam Cha) in Chinatown with Paula, a friend from my childhood in Macau. We had a wonderful time.
Tomorrow, Carlos, my dear high school classmate, will be the one trying to fatten me up.... again in Chinatown, of course.

Someone wrote that this drug has worked on some patients that took 90mg. I am taking one thousand and two hundred and fifty milligrams (1.250mg), while the first patients on this study started with 40mg. My cohort must be one of the last ones on this group since it is already at such a high dose. Knowing that the drug was effective at a lower dose is certainly the best news I have had in months. Thank you for the encouraging information.

F E M

Today Filipa came she has a comment to say:she says did you knowhi maya's a monkey.I say: hello today. Elsa says she is better.

tubes, wires and leads

Yesterday Tara, my mom's nurse , taught me about the tubes for blood, and the leads and the wires for the EKG's. Today she is going to quiz me on them.

Your friend that also writes on her own blog MayaandMeimei
Maya

MSKCC NYC

Today I'm with my mom at MSKCC. We are at the hospital. I will meet her nurses. Right now it is just the 2 of us. We are in New York City with Dadinha and Filipa thogh.

The first week on the Nutlin trial

1.250mg of R7112 have not been easy on my 86 pound body. The nausea turned from mild to severe and I have been in bed since Sunday. The drug was suspended for two days, Thursday and Friday, so I could catch my breath. Still, even without taking the pills for two days, I could still feel the study drug in my system... in any case I resumed my treatment yesterday and I am being as brave as possible. The truth is that I don't want to the Pharmaceutical company to reduce my dose. Tomorrow, I return to NY, and I will know what will the next step be.
I apologize for my disappearance and promise to be back less nauseated.

beijos da enjoadita

Did I say that the nausea was mild?

HUMAN PERFECTION
WHAT COULD GO WRONG?

A retro lipo sarc could ruin it all.

I was walking on 53rd street when I saw this poster. I could not resist photographing and posting it here.

The first day on R7112 went well. The only side effect I felt was some mild nausea. I should add that I also noticed that I walked (20 blocks) at a different pace from everyone else. A lady complained because I was walking so slow... What's the rush?

So, as I told you last week I made it to this restrictive clinical trial. I was on the waiting list for quite sometime but I am glad I am entering it now that the dose is higher.
The drug is oral and I just swallowed five pills. Not too bad since the pills are smaller than most of the oral (study) drugs I have taken.
The doctor told me that this is the best trial to be on if you have a liposarcoma. Let´s hope I am on it for a long long time.