domenica 28 ottobre 2007

L’ultima lezione di Randy Pausch.

di Antonio Sofi,

Randy Pausch 

Late in the summer of 2006, I started having some unusual symptoms, culminating with jaudice. Scans revealed it was pancreatic cancer. At this time, my wife Jai and I had a 4 year old, a 2 year old, and a three month old baby.

Pancreatic cancer is the most deadly of cancers, with only a 4% 5-year survival rate. The only hope is to be one of the 20% of patients (which I was) where surgery is possible. I had a Whipple surgery on Sept 19th, 2006; Dr. Herbert Zeh removed the (4.5cm) tumor, my gallbladder, 1/3rd of my pancreas, 1/3rd of my stomach, and several feet of my small intestine. I was in the hospital 11 days. Even with a successful Whipple surgery, only 15% of pancreatic cancer patients make it to 5 years, and there is no concensus about which chemotherapy and/or radiation after surgery helps. I found the Virginia Mason protocol, where early trials were claiming to get 45% of people to 5 years. However, it was an extremely toxic combination of chemotherapy and daily radiation: a nation-wide trial was shut down because several patients died from the treatment. There were two centers still offering the treatment: Virginia Mason in Seattle, and MD Anderson in Houston, and I was able to quality for the treatment in Houston. This happened in a whirlwind: the treatment needed to start within 6-8 weeks of the surgery. And Jai & I needed to figure out how to have somebody stay with me full time, and also take care of our 3 kids.

I spent November and December at MD Anderson receiving IV Cisplatin once a week, interferon injections three times a week, continuous infusion 5-FU, and daily radiation. Fortunately, Jai's brother and sister-in-law took in our three kids (on top of their 8 and 12 year old), in Norfolk Virginia, while Jai stayed with me in Houston. Every weekend, Jai flew to Norfolk to be with our kids, and my sister Ruby or one of my friends (thank God for Jessica Hodgins, Scott Sherman, and Jack Sheriff) would come stay with me. I was also blessed with my colleague Chris Hoffmann, a CS professor at Purdue who had been through this exact ordeal two years prior: his encouragment and practical tips were invaluable in getting through the treatment. The less I say about Houston the better, but by the end I was barely able to walk, and my weight (starting at 182) dropped to 138.

The next four months of chemo (continuous infusion 5-FU) was back in Pittsburgh, through May 2007. Now, I'm 168 pounds and look normal. (To answer everybody's first question, no, my hair never fell out). One additional treatment is a vaccine done at Johns Hopkins: I don't expect it will change my odds much, but it can't hurt. I still have digestive inconveniences from the Whipple surgery: I have to eat 5 small meals a day and take pills with each meal, and I have some abdominal cramping from time to time. A small price to pay for walking around.

In August of 2007, we learned that the cancer had returned, having metastasized to my liver and spleen, which is a death sentence. At that time, the doctors gave me an estimate of having 3-6 months of healthy living left. On Oct 1st, we learned that the first round of palliative chemotherapy was working, and that I would likely be "more like the 6 than like the 3 in that estimate."

My wife Jai has been an incredible source of stability and courage through all this. We both agree that "you can't control the cards you're dealt, just how you play the hand."

Nell'agosto del 2007, abbiamo appreso che il cancro era tornato, con metastasi al fegato e alla milza, che è una condanna a morte. In quel momento, i medici mi ha dato una stima di 3-sei mesi di vita normale. Il primo ottobre abbiamo appreso che il primo ciclo di chemioterapia palliativo stava lavorando, e che la previsione di vita era più vicina ai 6 che non ai 3 mesi.

 Randy Pausch, October 2007


Sto seguendo l'aggiornamento via via dell'evoluzione della malattia di Randy, qui.

L'ultimo aggiornamento è del 19 ottobre e dice così:


Oct 19 , 2007: Palliative Chemo is WORKING!!!! 

On Oct 1st, I had a CT-scan, and a follow-up PET-CT scan on Oct 13th. Both confirmed that we are willing: The tumors in my spleen are now gone, and the dozen or so tumors in my liver are all either stable or slightly smaller.


This happens in something like 15% of the cases of people who get gemcitabine+tarceva. It's a lottery, and I'm a winner. Statistically, this means I probably just bought an extra 2-4 months of good health. Said another way, I may have just doubled my life expectancy - you try to do that!


Most importantly, that buys me time to pursue "plan B" - the gemcitabine+tarceva will not last forever, and we want to have the next thing cued up and ready to go.


I am currently looking into other chemotherapies, some vaccination approaches (including a custom vaccine that would be made from my own cancer cells), and some super-secret stuff I'm not at liberty to talk about. But it is safe to say that I am thrilled with the quality of medical care I'm receiving and that I feel like I'm getting the cutting edge stuff that my species can provide for me.


Having said that, "winning" means buying time; I will always hold out hope that a miracle cure is developed that would give me a normal life span, but right now we're fighting to stay alive a few more months at a time.,


My quality of life is very good: I ride my bike an hour a day, play as much as I want with my kids, and enjoy being married to the most wonderful woman in the world. I have interimittant gut pain, some fatigue, and some mild "flu like symptoms" each week, approximately 24-72 hours after the chemo, but it's manageable. Small price to pay for walking around.

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