detoxing

The pharmaceutical companies like us to be drug free for four weeks before we start a new drug. After the initial disappointment because a drug did not work, as we hoped for, I always look at the bright side. I try to enjoy the four weeks away from the hospital and without any side effects.
On the 5th of April I will finish detoxing from BMS-582664 (Brivanib) and if I qualify I will start a drug that targets the Pi3-kinase pathway at Dana-Farber on the 6th. Hmmm, I still have a week...If I disappear until then it is because I escaped to a tropical island.
This photo was taken in 2003 in the salt mine of the island of Sal in Cabo Verde (Zé's island), where I want to be right now.

Discover Ferro Gaita!

"All We Are Saying, Is Give Beets a Chance."

This is what I tell Filipa almost every day.
;)

click here for the NYT article, No Beets in the White House Garden.

post-brivanib

Bolo de Laranja do livro de receitas da Anita.


Orange Cake from a children´s recipe book.
While on Brivanib I could not eat oranges,
;-)
so it is revenge time now.
Maya baked the first cake and Filipa the second one.

SPRING is here


and my garden is slowly waking up. Here is a photo of my first crocus this morning. The rest of the garden is dormant, just like me.

O prometido está gravado ;)

sodade de bô, Humberto

Aeroporto de Hong Kong, 2004

The photographer, in this case camera woman, never interferes, watch until the end (hi hi hi).

I did not blink but it _ _ _ _ _!

It really does. I am tired of this disease. I wrote a post today but I decided not too publish it since I just wanted to insult my tumors...or cry.

I was numb on Friday and yesterday I slept all day. Today I finally reacted to the news that I am off Brivanib. I am feeling tired of these stubborn tumors that just keep coming back. It does not matter how many surgeries I have, how many treatments I do, they just come back and grow.

Yeah I am not in a good mood today. If you are on Brivanib don´t feel discouraged by my words. I never passed the two cycles mark on my other clinical trials. At least with Brivanib I lasted six cycles (18 weeks) and the growth of the tumors was retarded.

Next!

It's been a very tiresome day. Had to wait all day to find out that the tumors grew beyond the limit that would otherwise keep Elsa on the trial.

But Elsa did not even blink when Dr. Maki told her that finally she was being taken off Brivanib.

Thoughts now are: Next!

Will it be Dana-Farber, will it be Memorial Sloan-Kettering, which place will finally find the drug that will kick Elsa's liposarcoma in the rear?

Well, we are off to Massachusetts. We miss Maya and Filipa.

Cheers, all!

The end of the B

Oh well, nothing that I am not used to. The drug did not work. I am off the trial.
The big tumor grew from 2 inches to 2 1/2 inches. Too much to stay on the drug.
By the way, I was on the drug and not on the placebo.
I'll post more later. Now we are leaving NYC to go home.

recado para a Zazá

Madame, since you don´t answer the phone... I have to write you this public message hihihihi
Leonard Cohen called me to say that he is staying an extra evening in Boston. Just to see moi (claro!), Filipa, Carla and you. Call me on my cell. I am going to NYC tonight.
beijos
(this is why I blog, to send IMPORTANT messages to my friends ;))

também quero uma cachaça

(This is an interview, in Portuguese, with the vice-president of Brasil, José Alencar. He is 77 yrs old and has a retroperitoneum sarcoma (I don´t know the type) since 2006.
He had his last (long and complicated) surgery 36 days ago and already returned to work. I am inspired by his strenght, I´ll post more on J.A. later)

Entrevista com o vice-presidente José Alencar de Eliane Cantanhêde publicada na Folha 11/01/2009

"Nao tenho medo da morte"

...Em 2006, em plena campanha da reeleição, mais um check-up e outra má notícia: "Um tumor suprapartidário... Quer dizer, um tumor retroperitonial". Tudo ficou bem pior: "Os outros eram carcinomas, mas esse era um sarcoma, que é recorrente. Você tira, e ele volta. Um tumor muito difícil".
A cirurgia foi em 18 de julho, a dois meses e meio da eleição, e ele foi direto do hospital para a inauguração do comitê do candidato do PT ao governo de São Paulo, Aloizio Mercadante: "O corte era brutal, e os médicos foram até o carro para me impedir. Eu fui assim mesmo!"
Mal tirou os pontos, dez dias depois da cirurgia, Alencar já entrou em campanha. Os médicos proibiram terminantemente que repetisse a história dos caminhões, porque eles trepidam muito. Ele deu um jeitinho: ia na boleia.
Lula-Alencar ganharam no segundo turno, em 29 de outubro, e o vice já amanheceu no hospital no dia seguinte, para exames. E... "lá estava o bicho recorrente!". Não no mesmo local, mas na mesma região.
Quimioterapia
A nova cirurgia foi feita no Memorial Hospital, em Nova York, com um especialista em sarcoma, Murray Brennan, com uma novidade: radioterapia intraoperatória, com o corte aberto. E começaram as terríveis quimioterapias.
"O grande problema do câncer são justamente os efeitos colaterais da quimio. Eles não são brincadeira. Isso precisa evoluir muito ainda", diz.
Mesmo assim, o "bicho" voltou menos de um ano depois. Brennan veio direto de Dubai a São Paulo para mais uma cirurgia, em 30 de outubro de 2007. Como pagamento, pediu uma camisa da seleção brasileira de futebol, assinada pelos craques, para um neto de oito anos na Nova Zelândia. Ganhou não só a camiseta, mas o uniforme completo e a bola.
"Mas a velocidade do sarcoma é uma coisa fantástica", diz Alencar, que fez tratamento de radiofrequência, passou por várias sessões de quimio e está experimentando uma nova combinação de remédios.
Daqui a dois dias, ele terá uma resposta crucial: se essa tentativa será capaz de reduzir os dois novos tumores já detectáveis e, portanto, inibir os ainda muito pequenos e não perceptíveis. Disso, depende a continuação do tratamento. Aliás, depende tudo.
"Eu não tenho medo da morte. Entreguei a Deus", diz. E ensina a quem passar pelo mesmo fio da navalha: "Sem desespero. Tem de encarar de frente e nunca desmobilizar".
Foram duas conversas com a Folha, uma na terça-feira passada, no gabinete do anexo do Planalto, e a outra na quinta, no Palácio do Jaburu, residência oficial da Vice. Concluídas as fotos, Alencar pediu ao garçom uma cachaça Maria da Cruz, um dos orgulhos da família, e tomou um bom trago com gosto. "D. Mariza não vai brigar com o sr.?", perguntou-lhe a repórter. "Não. Os médicos só proibiram bebida que faz mal. Essa aqui só faz bem!"
PS - Alencar realizou os exames na segunda e na terça. O novo coquetel de quimio não está sendo eficaz contra o sarcoma.

Luta contra sarcoma

do vice-presidente do Brasil, José Alencar, já dura três anos. Mais aqui e aqui.

Boston sold out

At 10 o'clock we were ready for the public sale. Filipa (no school today due to snow storm) on her computer using internet explorer and I was on two computers, my iBook and the other computer. I was using firefox. We were ready. The telecharge.com - An Evening with Leonard Cohen page open. Mouse on Find Tickets. Exactly at 10:00 we pressed on where it said Find Tickets.
During the first minutes of the public sale we got some tickets, but we wanted better ones. We refused Orchestra row Y, row R, row Z..... I knew the tickets were going to be sold out within minutes but I wanted to be closer to the stage, to Leonard. At 10:10 we decided to get anything that came up if we wanted to see him in Boston at all. On Filipa's computer two tickets on 1st balcony, 1st row came up. As far as balcony goes those were the best ones. But after putting all the information, credit card number, address, morning, evening, mobile phones I got: internet explorer error. Error. Error at a critical time like this? Filipa I still don't know why you use internet explorer.
And by 10:15 all tickets were sold out.
I have a feeling that there will be a second show in Boston. I hope my feeling is correct. When I saw LC in Toronto last Summer I wished I had taken my daughters and now I am trying to get tickets to take them...

If you don't know Leonard Cohen (or if you want to understand my obsession), you can start with this blog post on NPR, and/or the recent Beacon Theatre concert.