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Two auspicious milestones to report today — the 100th blog entry in ‘Rob’s Adventure’ and, more importantly, this is the two-year anniversary of my diagnosis with Stage IV lung cancer. Leslie and I will never forget the day we got the bad news, the day our lives changed from being relatively carefree ‘normal’ people, to full-time cancer fighters. (A lesser milestone is that I quit Latitude 38 six years ago on November 1, which began four wonderful years of sailing and traveling.)
Anyone can keep a blog; not everyone can live with this type of cancer for two years (and hopefully longer!). It’s really a tribute to a great team of doctors and Leslie’s relentless advocacy on my part that I am still here and, on the whole, doing better lately. Just two more trips to the ‘brain bakery’, as my friend Rodrigo calls it, and I will be done with those treatments and can concentrate on regaining some strength. The blood clot issue will take longer to resolve and, unbelievably, we are opting for a daily injection of the blood-thinner rather than the slightly less reliable pills (the blood draws are almost as numerous as the injections!).
For those of you tuning in late, I have been though five different therapies now: 1) cisplatin/Avastin/Alimta; 2) docetaxel; 3) crizotinib; 4) Gemzar; 5) AUY922; and now back to the recently FDA approved criz (now called Xalkori) through Kaiser.
There have been many important developments in lung cancer treatment over the past two years. When I was first diagnosed there were limited treatment options. Traditional chemotherapy was really the only option. At the time of my diagnosis genetically targeted therapies were only starting to make their way into treatment protocols, and it wasn’t yet standard practice to test biopsied tumor tissue for known mutations such as EGFR, KRAS, and ALK. We insisted on having the EGFR test done since there was a relatively new targeted therapy, Tarceva, that was proving to be extremely effective for EGFR+ cancer. Unfortunately the biopsy tested negative for the EGFR mutation. Leslie spent hours scouring the internet for information on other options and stumbled upon news of a new drug from Pfizer, crizotinib, that was showing good progress in treating people with the EML4-ALK mutation, which is more common in never-smokers. She figured out how to get my tissue tested as part of a clinical trial and, amazingly, it was positive for ALK. I was able to enroll in Pfizer’s crizotinib clinical trial that had recently opened at Stanford, and when I did finally get on the crizotinib arm of the trial I had a dramatic response. Unfortunately, after about four months I washed out of the trial when the disease showed up in my liver.
After another round of traditional chemo (Gemzar), I opted to enroll in the Norvartis AUY922 clinical trial at UCLA, but withdrew after six weeks when the side effects, mostly vision-related, overwhelmed me. We had some very dark days as it wasn’t clear, after five different regimens, whether anything would be effective in controlling the now severe progression in my lungs and liver. Now, I’m back on the recently FDA approved crizotinib which was given the fancy commercial name Xalkori – and it’s working again. For various reasons, only one percent of lung cancer patients enroll in clinical trials — I’ve been in two, and without the successful response in the criz trial, and its subsequent FDA approval, I might not be here to write this blog today.
Through all this I have had four biopsies and a bizarre number of CT scans, MRIs, blood tests, eye exams, EKGs, etc. Three trips to the ER, five nights in the hospital over two trips, hundreds of needles, and so on. Not fun, but we are throwing everything we have at this deadly disease.
It’s been a real roller coaster ride, one that we would rather not be on, but you deal with the hand that you’re dealt. We’ve had some great doctors and nurses along the way, first and foremost our Kaiser oncologist Dr. Raymond Liu. He’s the quarterback of the team, and we couldn’t ask for a smarter or more compassionate man to lead us (he went to Harvard, but we have decided not to hold that against him!).
Dr. Raymond Liu, a great guy and a great doctor.
Our oncology nurse at Kaiser, David Sexton, a hardcore road biker, is equally competent and kind — and I have come to trust him with the intricacies of injecting poisonous chemos into me. I don’t know that either of these men read this blog (a doctor/patient barrier that not all health professionals cross, or should) — but thank you.
Another great guy -- our oncology nurse and avid biker, David Sexton.
While we’re ‘rolling the credits’, thanks also to Dr. Jahan (UCSF cancer guru who recommended Dr. Liu), Dr. Heather Wakelee (Stanford lung cancer specialist who ran the criz trial) and her assistant Melanie; Dr. Lecia Sequist (lung cancer specialist at Mass General specializing in new targeted drugs), Dr. Edward Garon (UCLA, AUY922 trial) and his fun staff of Lisa, Heather and Jelani. My radiation oncologist, Dr. William Wara, is also fantastic, as are his ‘bakers’ Nate and Barbette. We also thank Michael Broffman of Pine Street Clinic in San Anselmo, who has provided us with advice on complementary and Chinese therapies which vary depending on which chemo regimen I am on. We’ve dealt with literally hundreds of health care professionals over the last two years, and we are grateful to all of them.
Friends, family and especially my wonderful wife Leslie have also helped us get through this, but there’s no way I could mention everyone. It’s a cliche, but combating this thing truly ‘takes a village’, and I am privileged, proud, and always somewhat amazed to find out how many villagers are out there for us.
Leslie on the Mt. Tam hike -- thanks to Clark Miller for the photo!
Two years — just think of it! Our heartfelt thanks to all.
It’s 10:30pm and we just returned from a two-day trip LA . It’s normally only a 6 to 6.5 hour drive, unless there’s a construction delay or accident – but today it took more than 8 hours to get home thanks to a big rig crash on the ‘grapevine’. We were already a bit numb from the results of Rob’s CT scan, so as much as we wanted to be home, we just crept along, wondering what lay ahead. Yes, as we expected, but still weren’t prepared for, the CT scan showed progression in both the lung and liver. But in addition, there is now fluid in Rob’s lungs and abdomen (known as a pleural effusion), caused by the disease progression to the lining of the lung. So what does all this mean? We’re not really sure yet, but it’s not good. Clearly the AUY922 trial was not a success for Rob, hopefully the scientists saw more benefit.
We see Dr. Liu on Friday to discuss next options which include the possibility of more chemo, going back to Xalkori (crizotinib which is now FDA approved), or another clinical trial. Timing is everything since it’s been two weeks since Rob’s last infusion and there’s reason to believe that the cancer is growing more rapidly than before. We have more questions than answers right now, but we’ll keep you informed as we have new information.
The last two weeks have been a whirlwind of traveling, doctor visits, and even some fun. Many people have helped us out lately, and I am grateful to have such amazing friends. Here are just a few of them:
First and foremost, my hiking partner John Comstock should be nominated for sainthood for all he has done for us since I was diagnosed 21 months ago. He and his wife Jo Ann made a pledge to cook a healthy vegetarian dinner for us at their house once a week, and that has taken a lot of pressure off Leslie and become an institution (‘The Tuesday Night Supper Club’) that we all enjoy. John and Jo Ann also watch Pinjji – the cool cat that brought us together four years ago — when we are gone (33 nights on Lopez so far this year, as well as other trips), and take care of the house in our absence. This last trip, John also drove us to Oakland Airport (because we were coming back into SFO), mowed the lawn, and even fixed the mailbox! He’s also helping us with getting our roof redone, something which may even start this week while we are back in LA.
Jo Ann, John, and Rob on the first of many memorable Pt. Reyes hikes - October 2007.
Steve Rubey, who I met in Hawaii at the ’84 Clipper Cup through our late mutual friend Carl Schumacher, has been a rock-steady friend through the years and has been especially supportive since I was diagnosed. He knows a lot about cancer, not only as a doctor, but as someone who lost his lovely wife Ivaly to the disease. Steve moved from Bellingham to Lopez to live with her, which is why I began visiting Lopez back in the mid-’90s – and I still feel Ivaly’s presence on the island. This last trip, Steve picked us up at the ferry, made us three dinners (lots of crab and salmon!), took us sailing on his Melges 24, loaned us his car, and a million other things. We wouldn’t have the yurt or any of our Lopez friends (Joe, Jerome, Randall, Jim, Langdon and Robin, just to name a few), if it wasn’t for my ‘big brother’ Steve.
- Mark Meloy (from Bluff, UT), Rob (under the straw hat), and Steve on the Melges 24.
A highlight of our last Lopez trip was a visit from my old boarding school roommate, Rob Campbell, and his wife Meg. They flew out from Connecticut to the yurt in one very long day, and were en route to a lumber executive conference in Alaska. I’ve known the Campbells seemingly forever, and it was great to see them for three days on our home turf. Rob got me a lot of my earliest big boat rides back on Long Island Sound in the ’70s, including the first overnight race I ever did (a C&C 39 called Freebooter). We’re both fans of Block Island, where the extended Campbell family has a gorgeous compound on the Salt Pond that Leslie and I have stayed at twice after BIRW. It was interesting to compare Block Island and Lopez with the Campbells – there are more similarities than not. (We decided that Orcas must be the Nantucket of the San Juans, while San Juan Island must be the Vineyard.) Rob is great with wood and tools, and quickly made us a washers game (big on BI, and soon to sweep the San Juans!) and finished off the wood counters we made earlier this year with nice wood trim. We did a little kayaking (Meg is a natural!), biking, berry picking, and even splurged on the Bay Cafe one night. It’s so easy to hang out with old friends, even in new (to them) situations.
Rob and Rob with the nearly-finished washers game.
Meg and Rob M. attempt the slalom course.
We were home for three days before driving down to LA to meet with Dr. Garon of UCLA and undergo a battery of baseline tests, all of which I passed. Coming more or less straight from the sleepy meadow on Lopez to LA, the juxtaposition of landscape and lifestyles was particularly mind-boggling. Too much pavement, too many people (half of them seem nuts), too much smog, not enough hills… I could go on and on, but none of this is new. What made the four days palatable was staying with old friends Mike Priest and Kellie Fennessy in their comfortable house in Torrance. I’ve known Mike and his brother Tom since the mid-’80s MEXORC days, and we all got to be good friends while sailing on the SC 70 Evolution in the ’89 TransPac. Mike met Kellie, from Mill Valley, at one of the Bitter End YC Pro-Am Regattas I attended in the early 2000s, so I have seen their relationship bloom from the beginning! It was great to stay with good friends during what otherwise was a stressful, discombobulating week.
Mike, Kellie and Rob.
Speaking of which, we are aiming the Suburu south again at 6:00 a.m. tomorrow with the goal of being on the table at UCLA for a 2:20 CT scan. Nothing is scheduled for Tuesday, and barring any unforeseen drama, I will get my first infusion of AUY922 (this drug needs a name! Any suggestions?) during an all-day session on Wednesday. Follow-up blood work will occur on Thursday and Friday mornings, after which we will retreat to Marin. We’ll be staying in Beverly Glen at one of Damon Guizot’s houses, which is literally within walking distance of UCLA – how convenient is that? Damon has been a good friend for almost a decade, and we have had some amazing sailing together on his immaculate Swan 53 Katrina in Sardinia (twice), Cowes, the Caribbean, Mexico and SoCal.
There are many other friends to acknowledge — but that’s enough for now. When you get hit with a medical crisis like this, you really find out who your friends are – and I am blessed with so many of them. Thank you, all.
We drove to LA on Sunday for Rob’s doctor appointments on Monday. The construction delays on I-5 south made the trip quite long, but we arrived safely in Torrance where we have been staying with our friends Mike and Kellie. After a routine appointment with a SoCal Kaiser oncologist in the morning (just in case we need Kaiser support down here), we arrived in Santa Monica for the appointment with Dr. Edward Garon at UCLA. He reviewed the AUY922 trial with us, and Rob signed the consent documents. As with the crizotinib trial, there are many baseline medical tests that must be completed before Rob can officially be admitted to the trial. The PET scan and EKG (actually multiple EKGs taken over 6 hours) will be done tomorrow, and the ECG and eye exam will be done on Thursday. We plan to drive home Thursday night.
We will be back down here again next week since we expect the CT scan to be scheduled for Monday, and then Rob should receive his first infusion on Tuesday. Even though the infusion only takes one hour, Rob will be monitored closely for most of the day with multiple blood draws, EKGs, etc., and will then have to return the following two days for more blood work. After that, the routine will involve a weekly infusion — indefinitely as long as the drug works — so Rob will become a regular LA commuter. He plans to bring his beach cruiser down so he can ride along Venice Beach with the locals. Next he will have a tattoo.
Our visit with Dr. Liu this morning to review Rob’s CT scan results confirmed what we had suspected — the cancer has progressed again. While there was no change in the chest lymph nodes, or the original lung mass, the liver lesions have grown, and there’s evidence of new disease in the lower lobe of the right lung. Damn!!
So it’s on to Plan E, which will be another clinical trial since good old-fashioned chemo just isn’t working any more. As we reported previously, we’ve been consulting with Dr. Lecia Sequist at Mass General since much of her research and clinical practice focuses on the EML4/ALK mutation (‘fusion’ for you purists). She has been wonderful in helping to guide us through the possible options.
While there are some promising new ALK-targeted drugs in the pipeline, they are only just beginning Phase I clinical trials to determine safe dosages – so they are possible options, but the timing isn’t so good (Kaiser won’t pay for Phase I trials, you’re not assured of getting a therapeutic dose, and there are very limited slots available). However, there is a new class of targeted drugs, Heat Shock Protein 90 inhibitors (HSP90), that appear to be especially effective in people who are ALK+ and/or have become resistant to other targeted therapies. Several of these drugs are now in Phase II trials. This means that the drug looked promising in vitro (petri dish), animal trials (mice), and the maximum safe dosage was determined via a Phase I trial in humans. The Phase II trials are designed to determine the efficacy of the drug in people — so there really isn’t a lot of data yet, but we understand that the initial results look promising.
Happily, Rob’s talented team of doctors have been consulting, and the consensus is that a particular HSP90 inhibitor from Novartis, AUY922, looks like the best next step. Unfortunately it’s not available anywhere in No. California, but there are trials open at Mass General and UCLA. With what we know today, it looks like we will try to get Rob into the trial at UCLA since it’s a few miles closer that Boston. We have more questions than answers about the trial at this point, but here’s what we do know:
- Rob must be off all chemo for 4 weeks prior to his first treatment (we’ll be spending some of that time on Lopez starting on Monday).
- AUY922 is administered weekly by infusion, so we’ll be back and forth to LA every week.
- Not much else yet.
We’re both still digesting the news, and the options are thinning out. However with no chemo fever, rash, or fatigue for the next few weeks, Rob will be feeling stronger physically and we’re looking forward to seeing friends and reviving our outdoor activities.
