Elsa's new trial.

Elsa asked me to write this post, because she has been feeling miserable and unable to write, even though she misses all of you.

This drug trial she is on is not the worst she has ever tried, but it has made her feel constantly miserable. She has not had energy to garden or write in this blog, and has had constant back pain. Hopefully she will get to feeling better soon and will re-take her normal activities.

Filipa and Maya try to pamper her, but sometimes even that does not work.

I am sure she will back soon, though.

Cheers!

One cycle down

Today I start the second cycle of STA-9090.

Cycle one went smoothly: twice a week infusions for three weeks in a roll, followed by a week break. I spoke too early when I said that I did not need any anti-nausea, Maura has to give me Kytril right before I start the treatment. In any case, the toxicity of this drug has been minimal.

The "pain" is that STA-9090 has to be administered intravenously even if you have a port. My double-port was removed last August, but I would have another one placed if the drug company, Syntha, allowed it to be to used for the infusions. My veins "dance away" every time Maura tries to get the line started. After all these years, my veins are still not cooperating!

My appetite has decreased and as a result I look anorexic, weighing 37 kg. The tumors are not popping-out like they do sometimes, I look like I am about to disappear. Ironically, I feel the presence of the tumors like I never did before. They are the cause of my permanent back pain. Until now, I had been among the "lucky" group of cancer patients that could say that cancer did not hurt...I must say that this pain, specially when combined with my chronic gastrointestinal problems, weakens my usual indestructible optimism.

In any case, I will be scanned - on the 21st of June - and we will see if these little monsters are growing. The last two surgeries happened in June... I just hope we can break the yearly cycle.

On a brighter note, I went to the beach this weekend and after several attempts I was able to dive in the beautiful cold cold Atlantic. The freezing water felt really good.

My Commandments

1 - Friends and family can lift you up and do what no pain killer, anti-nausea or other medications can do during treatments. Many patients choose to keep their illness a secret. I never understood their position, since it is from my family and friends that I draw my strength.

2 - Find doctors that have experience treating your illness and trust them. In the case of rare cancers, such as sarcomas, it is crucial to be seen in a sarcoma center, even if it means major changes in your life. I was living in the Middle East when I realized that I had to live near the place that could save my life, so I moved.

3 - Don't be afraid. As it has been said before, we should only fear fear itself. This point is easier said then done. A cancer diagnosis is a scary thing because it feels like the rug has been pulled from underneath our feet. There was a period during my treatments, around surgery # 4, that I was very scared. It was then that I realized that what I feared was death. I started thinking that it made no sense to fear death since it does not look like the act of dying hurts and once we are dead we no longer exist. If we do not exist, why worry about what we left behind? To stop being afraid of dying, I only had to be reassured by Ze that our daughters would be alright if I died. Believing that he would make sure of that allowed me to stop being afraid of my tumors. No matter what, everything will be alright.

4 - Accept your limitations and adapt to your new life. I learned to say no to many people. I accepted the fact that I could no longer work full time. I learned not to plan more than one thing a day. I learned that I can no longer multitask. I learned to schedule things for the hours I had more energy. I learned to accept that my energy level no longer went hand in hand with my enthusiasm.

5 - Never give up. Believe that a treatment that will work on your cancer is just around the corner. I have been testing drugs, to see if one will retard the growth of my tumors, for the past 6 years. I have participated in 13 clinical trials and so far only a few had a little impact on my stubborn cancer. But I will not give up my search. I'll probably be one of those patients begging from my death bed for another clinical trial.

6 - Find a way to work through your feelings. Cry if you want, talk to others in a situation similar to yours. What works for me is gardening and writing. When I am frustrated, tired of having cancer, I go to my garden (except during the long months of Winter). I spend hours digging, transplanting, sowing, cutting, watering... and I am able to forget everything. Expressing my feelings about my illness in writing helps me sort them out and archive them also.

7 - Connect with other patients with the same illness. Maybe support groups are not your thing - they are not mine either -, but there are other ways. Especially with the internet. I started this blog and with it I became less lonely. Two years ago, I did not know anyone with a liposarcoma. I was feeling alone. Thanks to so many sarcoma patients and caregivers that have written to me and shared their stories, I feel a lot stronger today.

8 - Optimism. I have never seen a study that shows that optimism helps to cure cancer. I am not counting on my optimism to cure me. But the fact that I am optimistic by nature helps me be able to be happy despite the fact that I have an incurable illness. Where others see my oxygen bottle half-empty, I see it half-full.

9 - Believe in science and stay away from quack medicine. I believe science holds the best promise to cure cancer. There are a lot of people promoting false hope. I always remember that if something is too good to be true, that is because it is too good to be true.

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).

Despite 43 hour surgery, liposarcoma patient dies four months later. NYT news story here.

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.

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.

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.