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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.
We’re both still recovering from yesterday’s bonus trip to the ER. Happily it didn’t require an overnight stay this time! Rob will have his fourth WBR treatment today and will have the weekend off. No sign of hair loss yet, but we know it’s coming (or is that going?).
The technician positions Rob for his WBR treatment.
Thanks to everyone who is joining our Free to Breathe® hike on Sunday, and many thanks to everyone who is supporting us with a donation to the National Lung Cancer Partnership! It’s unfortunate that fall weather patterns are moving into the Bay area — the forecast for Sunday currently shows rain showers in the morning. We’ll hike rain or shine unless it’s too windy. We’re 40% of the way to our fundraising goal of $5000 — and donations can be made until the end of the year. $5000 may seem like a drop in the bucket, but consider that this amount will provide 10% of the yearly funding for a lung cancer researcher – it does make a difference!
And finally, another short video about lung cancer. This one from the physicians at Stanford, including one of Rob’s oncologists, Dr. Heather Wakelee.
We had a very informative discussion with Dr. Liu yesterday, and identified several possible treatment options, and a tentative plan of action.
1) Go back on Alimta (pematrexed) – infusion every 3 weeks. Rob had this chemo (in combo with Avastin and cisplatin) last year when he was first treated. It is well tolerated (minimal side effects), but might not be effective a second time.
2) Try a different chemo regimen – possibly vinorelbine (chemo) + cetuxumab (monoclonal antibody) – weekly infusions. This is a combo that has shown some success, but it is chemo, with side effects such as neuropathy, fatigue etc. As a sixth round of treatment, there’s probably less than a 10% chance that this would have much impact on the cancer, and would likely reduce Rob’s quality of life with side effects.
3) Go back on crizotinib (now Xalkori) — targeted at the ALK mutation (fusion) which Rob has, it worked well for a while, and it might work again – but there’s no way to tell in advance. Side effects are mild and known, and it’s a pill. There’s also a possibility of some radiation to the right lung to open up the airways.
4) Novartis LDK378 Phase I trial in Boston. This one is tricky on several levels. First, there has to be a slot open and Rob must meet the enrollment criteria. It seems that the trial will be opening up within the next 2 weeks, but the timing is uncertain. We are awaiting some additional information from Dr. Lecia Sequist at MGH on the timing of the open slots. Second, we need to have some reason to think that Rob will benefit from the drug. However, because of the rules pertaining to trials, the trial investigators are not permitted to reveal information on how people are doing, since that defeats the purpose of the trial. This makes it very difficult for Dr. Liu and us to determine if it would be the best course of treatment for Rob. However, we have positive anecdotal reports from our friend Linnea who started on the trial a couple of weeks ago. (Linnea writes an entertaining and inspiring blog about her own adventure with lung cancer. She has been a tremendous friend to us both since I met her last spring at the Lung Cancer Advocacy Summit.)
Third, Kaiser has historically refused to refer patients into Phase I trials due to unknown efficacy. While Novartis will pay for the drugs, tests, and procedures performed solely for research purposes. They do not pay for anything that is considered standard of care — i.e. medical care one would received in absence of the study such as CT scans and routine lab tests. However, having reviewed the Rob’s plan documents, I think we might be able to make a good argument that coverage should be provided. I’m certainly not going to take a simple no for an answer!
So where does this leave us? The anecdotal information we have about the LDK378 trial seems very promising given that it is specifically developed to target at the ALK fusion. The biggest issue is when trial slots might be open. If it’s in 1 – 2 weeks, great, we would go to Boston and get the process started. If the slots won’t be open for another 3 or 4 weeks, we would need to get Rob onto something else (probably crizotinib) in the interim to give him the best chance slowing down the disease progression. If he starts on another treatment prior to the trial, there is at least a 2 week wash-out period before starting on the LDK.
We are hoping to have some more visibility into the LDK trial early next week, and could be on a plane to Boston shortly thereafter.
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.
I wish we could say we are optimistic about Rob’s response to AUY922, but from our perspective it’s not looking good. This past week has been especially difficult — Rob’s cough continued to worsen, he’s been extremely fatigued, and the initial visual disturbances have become more severe (his vision has dimmed so he feels like he’s wearing dark sunglasses all the time, making night vision nearly impossible). This is the worst he has felt since starting his lung cancer treatments. The only positive note is that his weight has been stable despite his lack of appetite. Yesterday, after traveling to UCLA, the decision was made to have him skip this week’s treatment, giving his body a chance to recover from the side effects. We are hopeful that he will start to feel better (and see better) over the next few days.
Next week is a big one. On Wednesday Rob will have his 6-week CT scan, which will let us know whether or not the drug is working. In the meantime I’ve been working on the ‘what’s next’ scenarios. Should the scan show progression (which is what we expect given the cough), we are hopeful that Rob can join the Novartis LDK378 trial at Mass General in October. Like crizotinib, LDK378 targets the EML4/ALK translocation, but in the lab it looks like it may be an even better ALK inhibitor than crizotinib. There are two main hurdles for getting into the trial: 1) an open slot in the trial (they are very limited); and 2) getting Kaiser to refer Rob into a Phase I trial. In the past Rob’s Kaiser doc said that they would not refer anyone into a Phase I trial since few people have a good therapeutic response in Phase I studies. However, with new targeted therapies, even Phase I trials can provide significant therapeutic effect, so we are hopeful that they will come through for us on this one.
Wednesday was a long day — up at 4 a.m. to make a 7 a.m. flight from SFO to LAX — home at 10 p.m. This was Rob’s fourth week on AUY922, and he had a full day of blood work, ECGs, an appointment with Dr. Garon, and a PET scan. We left for LA feeling somewhat discouraged — Rob’s cough has been more persistent than ever, he’s been very fatigued and keeping weight on has been a problem partly due to a lack of appetite. However, we left feeling more optimistic thanks to Dr. G.’s explanations. First, he told us that the cough isn’t necessarily a barometer for cancer progression — weight loss and pain are better indicators. Good news, since Rob has no pain, and his weight seems to have stabilized despite his lack of appetite. He now has a prescription for Marinol (synthetic THC) to boost his appetite as well as a prescription for medical marijuana that he’s been reluctant to use. As for the fatigue, it’s hard to determine where it’s coming from — it could be the AUY922, the codeine he takes for the cough, or the cancer.
However, Rob was encouraged to continue to stay active, and continue to hike, bike and sail, even if less vigorously. He went for a short walk yesterday, and is going out with Hank momentarily on the trawler to watch the Big Boat Series. Just holding on out there when it is blowing 20+ against an ebb is a form of exercise! However, it’s bittersweet for him to just watch, as he loves the regatta after sailing in it about 20 times. Rob was able to join Hank and the rest of the Yucca crew for the Jazz Cup last weekend. He was exhausted when I picked him up in Benicia, but it was great for him to be out on the water with great friends.
The downwind Jazz Cup is the perfect race for Yucca.
I sat at the end of the Pinole Pier with my long lens and watched them go by well ahead of their competition.They handily won their division and were 14th overall in a fleet of 101 boats.
We won’t have any empirical evidence as to whether or not AUY922 is working until Rob’s next CT scan in two weeks. The PET scan was required by the trial protocol for research purposes and is unlikely to provide definitive information about progression. So once again we’re playing the waiting game, which is always stressful. My job these days is to keep Rob interested in eating, and I’ve been developing all sorts of new high calorie, high protein smoothies and other healthy food. We even had steak and potatoes last night!! Of course I seem to be gaining the weight Rob has lost…
On Wednesday, Rob flew to LA to receive his second AUY922 infusion. I stayed home this time and started going through some of the images I shot on our previous LA trips.
A view of LA from the Hollywood hills. That's Hollywood Bowl in the lower right corner.
Downtown LA through the haze/smog.
Since Dr. Garon’s office and the infusion center are in Santa Monica, I had the opportunity for a little sight-seeing while Rob was stuck in the infusion chair for 6+ hours.
The terminus of Rt. 66 -- Santa Monica Pier.
Cars, cars, cars - Santa Monica Pier.
Santa Monica Pier.
Beach cruisers were everywhere. In the background is the 'Big Blue Bus', which is how Rob gets from LAX to the clinic in Santa Monica.
There are billboards everywhere!
During our first LA trip we took a brief walk on the Hermosa Beach pier. We noticed a number of people with headsets, and then spotted the hidden camera as well as nuns, garbage men, and baby strollers straight out of central casting. It was very entertaining and, who knows, maybe we’ll become famous reality TV stars.
We only saw this notice as we were leaving the pier.
This guy has his finger on some sort of remote control device -- and the trash can in the background is holding a not really very hidden camera.
These 'nuns' were in on it, too.
It was refreshing to see 'real' people fishing on the pier.
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.
We’ll be leaving Lopez in a few days, and it’s always a hard thing to do. This visit has been terrific — the weather has been nice and we’ve enjoyed seeing our friends. The kayaking and hiking have been very refreshing. More about all that when we return.
In between all our activities here, I’ve been coordinating Rob’s next doctor appointments. He’s now scheduled to see two docs on August 8th in LA. First is a Kaiser oncologist – required so that we have a local Kaiser facility that can interact more directly with UCLA. Second is Dr. Edward Garon at UCLA. He’s the principal investigator for the Novartis AUY922 trial, and will be reviewing Rob’s history and current status to ensure that he can be admitted to the trial. We are hopeful that we can sign the paperwork while we’re there and get started on the tests ( e.g., eye exam, PET scan, EKG, blood work, etc.) that are required before he can start receiving the new drug. We’re not sure what the timing of the testing will be, but we hope we can get everything done in a few days.
That’s all for now. We’re looking forward to the arrival today of Meg and Rob Campbell — Rob and Rob were roommates at Westminster School and have been friends for 40+ years! We’ve enjoyed their hospitality on Block Island, and now we’re looking forward to reciprocating — albeit without indoor plumbing or electricity.
