magic word- ShrunK

When my sarcoma friends get good news I celebrate. I am happy for them and for me. It is even better when they are on the same trial as I am.
Kathy is in Chicago and she got EXCELLENT news yesterday.

"EVERYTHING SHRUNK AT LEAST 20%!!!!
I was soooo happy.. I got up, I hugged the trial nurse and the Dr. while practically crying because I've gotten such limited good news since this whole adventure began in 2006!" more here

Card Blue also continues on the study.

We went to New York late last week for a CT scan marking my completion of the first six weeks of brivanib. The scan showed that my tumors have grown by something like 5 to 8 percent, which falls within the margins of stable disease, so I will continue on the study for at least another six weeks. more here

Lately, it feels like I have most of the possible side effects related to Brivanib.

I am feeling: fatigue, weakness, higher blood pressure, loss of appetite, diarrhea, weight loss, dizziness, lightheadness, headache, dry mouth and (some) confusion.

The fact that the court canceled my jury duty yesterday was a good thing.

I think I am also coming down with another head cold...

I have been complaining a lot. I promise to stop when Spring arrives and I can return to my herbs and flowers.

15th week on brivanib

I fall asleep almost immediately after I swallow, at 10pm, the four (mega) pills.
I am thirsty, especially during the night.
My mouth is dry. All the time.
I am spaced-out (ok, more spaced-out than usual).
Even favorite foods have lost all the appeal.
I write to-do lists and then I forget to look at them (Zé will say that that is my normal...)
Fatigue (this is hard to tell if it is a side effect since I no longer have a baseline, I have been feeling tired in the last years).

All these signs have been pointing to the fact that I am on the drug and not on the placebo. Yet, I was not a 100% convinced, until yesterday. If the drug company does a random selection I was bound to get the placebo. That was what I thought, based on the fact that I never win anything.

However, yesterday, when I had my vitals taken - blood pressure continues to be high, weight continues to decrease - I became certain that I am still on the drug.

Yesssssss. I am one of the lucky ones.

When I do the decisive CAT scan, in three weeks, I might have to stop Brivanib, since the tumor growth has been close to 20 percent. Still I am happy. At least the pattern where my tumors did not respond at all to the drugs has changed. Who knows, perhaps the tide has also changed.

more STABLE news

Dear FDA:

We (sarcoma patients) want you to know that in our world STABLE means GREAT NEWS... (open letter to be continued)

Michelle has results from her exams :-)

"Today was my 12th week on the clinical trial for Brivanib. I met with Dr. Maki & he gave me good news that my tumors are stable, there is no change from my last MRI... "
continue here

Brivanib or Placebo 800mg

I just took the pills. I took them the same way I do every night, with food and a little after 10pm. Anderson Cooper 360º is on and I am already in bed. My laptop on top of my belly. If this is the study drug I will fall asleep in 10 minutes. If it is a placebo I will write another post tonight ;)

Inconclusive News

Elsa just saw the doctor. She is going on, but since there was some growth and not reduction, she is being randomized. She may be getting the placebo or the drug for the next few weeks.

Still, it's better than getting kicked off. The rate of growth is much less than usual. Usually it is obvious that the drug does not work. In this case, because of the amorphous nature of the tumors and the fact that she cannot take IV contrast, the measurements are hard to take, so that small differences are not immediately obvious. The key is the amount of growth is NOT OBVIOUS.

So we take it the way it must be taken- positively.

PAIN!

I made broiled salmon for lunch (it was good) and was eating it with Filipa and Maya when Elsa, who had been upstairs resting, came down with cries of pain in her belly and a smile on her face. The hope is that the pain was due to her tumors crashing under the effect of Brivanib- ergo the smile.

I want more pain like this one

One of the signs that the tumor could be collapsing is pain around it. I fell asleep around mid-day with a terrible migraine and then I woke up an hour later with a continuous pain around one of my tumors. The pain lasted 15 minutes.
I really hope that this pain I just felt is a sign that the tumor is starving because Brivanib (BMS-582664) has killed all the veins that supplied it with food.
QUERO MAIS DORES COMO ESTA!!!!!

More Good News

R. is participating in the same Brivanib trial and also has a liposarcoma. He comes from Ohio and like many of us is hoping that the four pills, he takes everyday, will end the sarcoma nightmare. Last Friday was the day R. completed the second cycle (six weeks) and got CT scan results.

As I was leaving the hospital, after getting pills that will last me until the 23rd, I saw him. Contrary to the worried expression I had seen earlier on, there was a smile. The same happiness on his wife's face. Shrinkage, they told me, Shrinkage of FOUR tumors!

Four tumors shrunk! Four liposarcoma tumors responded to Brivanib.
Yes, I think this is going to be a happy year.

blogging, brivanib and coincidences

On Friday I wanted to post from 53rd St, but for some reason I could not get to my blog (Maya, the digital native, was able to post from hers). As I tried to get to my blog I found reference to Elsa with a liposarcoma on a link to a blog called Card Blue. Oops that has to be me. Me and my silly posts. I was curious but the computer at Sloan Kettering did not allow me to access the blog.
So when I got home, I turned the computer on to get to Card Blue. But, as it often happens I was immediately distracted and went to another site, this time, the Sarcoma Alliance. I had not been there in a while and to my surprise (and honor) it now has a link to Living With a Sarcoma. Oops.. again a link to me and my silliness ;).
Aha but there it was! Underneath my blog, a link to Card Blue. With a smile I found the post mentioning my stable tumors and Michelle´s. But there were more coincidences. Card Blue was also starting Brivanib at MSKCC. And as I read older posts I realized that we had actually been in the same waiting room at the same time a couple of hours before.
Coincidences. I believe in them.
Good luck. Viva Brivanib.

One more reason to celebrate

More GREAT news.
Brivanib is also working on Michelle´s tumors!
YES!!!

What Wonderful News

My tumors are stable. Wake me up. I must be dreaming!

Better yet, our tumors are stable. Iris also has a retro. liposarcoma and we started Brivanib on the same day. We have been treated by the same teams, in NY and Boston. And today we both heard good news.

Yes, stable is wonderful in the sarcoma world.

Going on.

So we are at the Sloan and for the first time Elsa is going on past the six week mark. Although it is hard to measure her masses, so that some appear to have shown growth and one shrinkage, the over all growth was around the 10% mark, thus below the 20% treshold, which is the amount of growth where the tumors are considered stable.

In other words, the news is good. No new tumors and overall growth less than 10%. It's Christmas time and we are happy.

The doctor was also happy. She is clearly amazed that Elsa shows no signs of ill health and feels positive and good, take away the normal fatigue. The doctor decided to give Elsa a little iron transfusion to see if she can feel even less fatigued. A good thing since she has friends coming over for lunch on Sunday (i.e. I won't have to do everything. Eh, eh, eh).

I'm probably mumbling but I am also feeling very happy and ecstatic that she is going on. In another six weeks they will check again and hopefully the news will be good again.

It's been a long day, but with news like this, it does not matter.

Elsa was also happy this morning when Iris, who started her treatment on the same day as Elsa, also received news that her tumors were stable.

So onwards with the fight.

Cheers,

Z

No man is an island

Zé wrote a post about how much fun it is for the girls to stay behind with tio Armindo and Tia Didija and about how we get to be spoiled by tio Jorge Pedro and tia Maryanne when we are in NYC. He also wrote about the "mini-convention" of Retro Lipo Travellers that took place in the treatment room last week. The liposarcoma stories that were shared, were nothing more than stories of hope. Two topics, I wanted to write about, but since, as always, Zé wrote it a thousand times better, I am just going to copy/paste from his blog.

Elsa's Drug
written by Zé

For the past few weeks, as those who check Elsa's blog know, Elsa and I have been traveling to New York City, to Memorial Sloan Kettering Cancer Center, where she is trying out a new drug. The traveling back and forth has been very tiresome, but hopefully worth it. She has found three other people that are taking the same drug. One lady has almost the same history as Elsa. Apparently there is a lot of hope and expectations riding on this drug. There are quite a number of people taking the drug, because it worked so dramatically on a patient who happened to have a liposarcoma, just like Elsa. Every time we go there, we hear of more people getting on the drug. They are all very hopeful people who have made a very calculated bet on science. They all have stories of struggle against this horrible disease, but they all share a common attitude that science will come up with a solution to their problem. I, for one, believe this is the correct attitude and have always encouraged Elsa to approach her battle this way.

But even if it is tiresome and sometimes stessful, like when I have to deal with NYC traffic, these trips have also had their moments of fun. Every week Elsa and I stay overnight at my uncle Jorge Pedro's and aunt Maryanne's house were we are pampered and regaled with stories like only he can recount.Tios Didija and Armindo stay with Maya and Filipa, at our house, while we are away, which I think is also a joyful time for them. Although it is a difficult ordeal to go through, our family has been supperb to us in helping us deal with it. I am reminded of the Donne poem: "

No man is an island, entire of itself
every man is a piece of the continent, a part of the main ...

Indeed!

Yesterday

Our smiles reflect what was going through our hearts. If you read the comments you will see that we only met last week, through our blogs. I found Michelle´s blog when I searched Brivanib (on google blogs). So, as you can imagine, we were excited to meet in person. On top of all, we have Doctor´s visits on the same day, same team at MSKCC.

If you have a sarcoma you know that it is not often that you bump into other sarcoma patients (sarcomas are one percent of the adult cancers and there are over 50 types). Even for those of us who are lucky to be treated in a sarcoma center it does not happen that often. First of all because we do not go around the waiting room asking: what do you have? what drug are you on? Also our doctors and nurses don't tell us: see that other patient over there, he has the same thing as you. There is something called patient privacy.

Anyways, there was more than one reason for Michelle and I to be smiling. We were smiling not only because we liked each other immediately and because we really know how the other one feels. We were smiling because when Michelle was driving to MSKCC, something wonderful happened. She had a terrible pain and horrible nose bleed. Yes, in our world we celebrate these things ;). Michelle's sarcoma tumors are located on her brain. What happened yesterday COULD mean that the drug is working and one of the tumors COLLAPSED. Read more about yesterday in Michelle´s blog.

S.O.B.

I am not swearing, I swear.
S.O.B. is the medical abbreviation for Shortness of Breath, one of the side effects I have been feeling. I hate it. It is interfering with my gardening. I know the growing season is over but I still have a lot to do before Winter sets in. I want to plant garlic, more tulips, crocus and hyacinths. I just wish the S.O.B. would go away.

This is my "joseph's coat" climbing rose yesterday before I pruned it. If you are not a gardener you might wonder why do I spend so much time digging the soil or cutting branches. The answer is: for my sanity.

(Michelle,
I can't wait to meet you in person this Friday. Are you also feeling Shortness of Breath? I feel it when I bring the laundry basket up the stairs and when I garden. It has not stopped me from walking in NYC though. If you feel up to it we can take a walk between blood draws.)

BMS-582664

I wish I had a "Shapirogram" to explain how this antiangiogenic drug works. But since I don't, I am going to tell you how I remember it explained to me when I was on a similar drug, XL880.
Cancer cells in a tumor need blood to supply it with oxygen and nutrients to grow. The idea is to starve the tumor by blocking blood vessel formation. Imagine a war won by attacking the trucks that carry the food supplies for the enemy troops (here I go again with the military metaphors).
Starve the tumor. Just imagine...
OK I am getting off the computer. I have to take my 4 pills and I still want to plant 100 tulips today. More on Antiangiogenesis here.
(Filipa took this photo inspired by Dr. Eder's photo, the one he is holding the Avastin box. By the way, my fingers are red because I was cutting beets).

life without black pepper

When the nurse told me that I could not have any black pepper while on this study I did not imagine that it was going to be quite a challenge.

Can you tell me if this Shrimp and Spinach Salad has black pepper?
I can ask the cook to do it without the black pepper.
Thanks.
(food comes) It has no black pepper, right?
Yeah. The cook told me he did not put any pepper.
(shrimp is covered with black powder, still I put one in my mouth)
Arghhh pepper. And it tastes like black pepper. Zé Try one.
Oh yes. This has a lot of pepper.
(waitress comes)
I asked you for no black pepper. I can´t have any, not because I don´t like it, it is for health reasons. Not even a little. And this dish is loaded. Maybe the cook heard extra pepper...
(Waitress takes back my plate back and then returns with a plate of boiled shrimp on top of Spinach). Sorry there was some miscommunication...
It's all right.
(Waitress leaves and I try one shrimp)
Arghhh now it is tasteless. No wonder Vasco da Gama did not rest until he reached Calicut.

Maria Tonta em Nova Iorque

I completed the first week of Brivanib and I must say that as far as chemo drugs go, this is one of the "nice" ones. Hard to believe that I did not need Zoffran (anti-nausea). The only side effects I felt were dizziness and fatigue. The Protocol is not bad either. I only have to come to NY once a week.

No black pepper?

Yes. No grapefruit juice, no orange juice and no black pepper with this study drug.
Four 200mg tablets by mouth. Once a day. The name of the drug is Brivanib. The name of the clinical trial BMS-582664.
Now we just have to keep our fingers and toes crossed. For all liposarcoma patients and for me.