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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 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.
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.
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.
We’re happy to report that Rob, his sister Marnie, and I had a very informative and hopeful consultation with Dr. Lecia Sequist at Massachusetts General Hospital yesterday. Dr. Sequist and her colleagues at MGH have been at the forefront of research into new, targeted agents for lung cancer treatment, especially those that target the ALK and EGFR mutations. The aspect of her research that we are particularly interested in focuses on how lung cancer becomes resistant to targeted therapies (e.g. crizotinib and tarceva). The MGH team, working with many of the leading pharmaceutical companies, is developing and testing new drugs with potential for patients who become resistant to prior targeted treatments.
The next step for Rob is to have another biopsy – this time of the liver lesions – to determine whether/how his cancer has mutated since his initial diagnosis. The biopsy is scheduled in 8 days back at Kaiser in San Francisco, however the tissue will be sent to MGH for genetic sequencing. In particular they will be looking for a mutation to the ALK mutation, and the results will help determine the best therapy going forward. The various options include two new Phase II trials of HSP90 inhibitors (from Infinity Pharmaceuticals and Synta Pharmaceuticals), a new Phase I Pfizer trial of crizotinib + PF299804, and a couple of new ALK inhibitors that are entering Phase I trials. (More on clinical trials in general and the implications of the Phases in a future entry.)
For now, we are hoping that the Gemzar works, and it’s still too early to tell whether or not it’s working since it usually takes two complete treatment cycles to see a response. The goal is to hold out as long as possible with the current treatment — if it’s working — so that there’s more data on the new drugs to guide our treatment decisions. However, if the Gemzar doesn’t work, we would probably pursue the first treatment option available. This would likely mean spending a lot of time close to MGH since the two HSP90 drugs are given via infusion either weekly or twice-weekly. Luckily Rob’s sister Marnie lives within 50 miles of Boston, so if we do end up here we have a good home base.
The other exciting thing to report so far from this trip, is that we were able to connect with a remarkable woman I met at the Lung Cancer Advocacy Summit in Denver last month. Linnea has been battling lung cancer for about six years, and was one of the first people in the crizotinib trial. She’s been on the criz for 2.5 years, but is now looking at her options since she’s also had some progression. Linnea was kind enough to meet with us at MGH and we had a delightful lunch in Boston. It was especially helpful for Rob to connect with someone in a very similar situation who has a lot more experience sorting out the ups and downs of life with lung cancer. Linnea is quite an inspiration for us both!
So much for the highlights of our Boston adventure; the lowlight was getting rear-ended by a Boston Cab on our way back to Providence. Just a minor fender-bender in stop and go traffic on Rt. 128 with no significant damage to our rental car — but I’m definitely in favor of taking public transportation to MGH for future visits!
I’ll admit it – I’m sick of cancer, chemo, needles, hospitals, CT scans, coughing, neuropathy, low energy, and various aches and pains. It is scary and depressing that my cancer continues to progress despite doing everything in our power to contain it. The bastard is getting smarter, and we are running through the drug options quickly now. I’m disappointed that my association with Stanford was so brief, and had hoped for a much longer run on criz, which was a vacation compared to getting back on chemo. Hopefully these weekly infusions of Gemzar will work, but so far my cough has not abated and I’ve had some nasty chills and fevers from the drug. On Sunday night around 6 p.m. — right on time for the Rapture — I started shaking uncontrollably, and then developed a fever that finally peaked at 102.4. I skipped dinner, and after 15 hours in bed, I was disappointed to wake up at home instead of in heaven. (If there is a God, he or she must be in hysterics over his latest prophecy!)
Okay, enough whining. I’ve only had two doses of the ‘Gem’, so it is too early to know if it will work – and I am optimistic that it will, as I figure I’m due for a break. The good news is that I’m still here, and in relatively good shape other than the chronic cough and a minor energy crisis (time to get hiking again!). The new chemo regimen has thrown a monkey wrench in our summer plans, but we will deal with it — and still intend to spend as much time as possible at the yurt. We’ve also got a 10-day trip lined up in early June to go back to New England to see family, friends and a doctor at Mass General Hospital (MGH) about Plan E. The MGH docs are experts in the new ALK-targeted therapies, and have several potential clinical trials (not available in our neck of the woods) that might be options for me. Leslie is leaving no stone unturned in her efforts to find the best next step.
Coffelt farm from the pond -- the yurt is in the far right corner.
It's springtime at the yurt.
Happily, we managed to sneak away for five days on Lopez last week, our shortest trip yet. It was rainy and still a little cold when we arrived, but glorious for the last two days – it was hard to tear ourselves away, but I only have a week between chemo sessions now and had to get home (Kaiser doesn’t extend up to Washington state). Over the weekend, we went to a quintessentially Lopezian event, the annual Sheep-to-Shawl demonstration at the community center, a full day of herding and shearing sheep, spinning wool and loom demonstrations, environmental exhibits, butcher clinics and even lamb burgers if you were hungry (we weren’t).
A traffic jam on Lopez!
Spring lambs.
Rounded up, penned in, and ready for shearing.
The shearing begins.
Oh the indignity!
Almost finished.
We have a wood stove -- but will this ewe be cold tonight?
A major accomplishment during this visit was the construction of two kitchen counters for the yurt (finally!). Thanks to Steve for handling the power tools! We also had several great meals with Steve and Kathryn, read books by the fire, hiked a little, and generally took it easy. It’s still too cold for kayaking or sailing.
Measure twice and cut once!
The finished counters!
The big excitement – which is a relative thing on Lopez – was the discovery of two baby Great Horned Owls in the woods. They were cute little fuzzballs, tentatively named Custer and Sitting Bull, easy to find in the same area every day as they are still oblivious to the art of camouflage. Their parents were almost always lurking nearly, but were much harder to spot… We also think there are eagles living back behind the groover at the moment, and the sky is thick with three kinds of swallows (barn, tree, and violet-green). A pair of ducks and geese have taken up residence at the pond, and Steve – who is becoming quite the birder – has put up various kinds of birdhouses all over the meadow. Oh, and the robins start chirping incessantly at 5 a.m. Anyway, Lopez is a birder’s paradise, if you like that sort of thing.
Great Horned Owl fledglings.
One of the owlets.
The watchful eyes of Mama or Papa.
Rob and Steve with the new bluebird house near the yurt.
A violet-green swallow checks out a possible new home.
Rob had his PET/CT scan yesterday morning at Kaiser’s facility in Santa Clara, about 60 miles south of Mill Valley. A few hours after the scan we were able to pick up a cd with the test results and images, and drop them off at Stanford for Dr. Wakelee’s review. As luck would have it, she was actually able to see us for a short consultation, which was invaluable at relieving our anxiety about the extent of the progression. As Dr. Wakelee explained, there are two new areas of cancer on Rob’s liver, not large, but still significant because this means that the cancer is no longer responding fully to the criz. The good news is that there was no progression in the main lung tumor, and a couple of chest lymph nodes showed a very small amount of growth. However, according to the crizotinib Phase II trial protocol, the drug must be discontinued due to progression. What a disappointment!
So, where do we go from here? We won’t know anything for certain until tomorrow when we see Dr. Liu. He and Dr. Wakelee have been discussing Rob’s options. At this time we think he will start another round of chemo, probably with the drug Gemzar (gemcitabine), which is supposed to be well tolerated and have minimal side effects. The down side of this choice for us is that it is typically administered on Day 1, Day 8, and Day 21 of a twenty-one day cycle. This will unfortunately cause changes to our summer travel plans, but that’s a small price to pay if the drug works.
In the meantime, I am continuing to research other clinical trials. There are several new ALK-targeted drugs in the pipeline, but whether they are or will soon be available in a clinical trial is still an open question. Fortunately, Dr. Wakelee is well connected with the people who will be running the trials, and will open doors for consultations as we go forward.
I personally had the good fortune to meet some truly inspiring lung cancer survivors just over a week ago when I attended the National Lung Cancer Partnership’s annual Lung Cancer Advocacy Summit in Denver. Of the 50 people chosen to attend, fourteen were lung cancer survivors, and the rest had been touched deeply by a loved one who has/had the disease. We were all there to learn how we could personally make a difference in stepping up the fight against the number one cancer killer in America.
One person in particular was especially inspiring. Linnea, a never-smoker diagnosed about four years ago, was one of the initial people in the Phase I trial of crizotinib. Two and one-half years later, she is also dealing with progression, although her Phase I participation has enabled her to stay on the criz while her doctors figure out the next steps. Speaking with her was truly inspirational, and it’s easy to see why she is Pfizer’s poster child for criz.
Over the course of two and a half days, we received an intensive amount of information, starting with an overview on the science of lung cancer and key areas of research which included a tour of the University of Colorado’s Denver lung cancer research facilities, a leader in lung cancer research. Other workshop topics included how to fight the stigma of lung cancer, how consumer advocates can play a role in the R&D process, using the media to raise awareness, and legislative advocacy. My head was spinning for several days with all the information and ideas from the Summit.
As I noted some time ago, the survival statistics for lung cancer patients are depressing — only 15% live more than five years after diagnosis, a number that hasn’t changed significantly since the National Cancer Act of 1971 declared the “War on Cancer“. Why? Clearly the stigma associating lung cancer with smoking is a leading cause of the funding disparity, but anyone can get lung cancer — in fact, over 50% of newly diagnosed cases of lung cancer are in never-smokers or people who gave up smoking years ago. The following chart says it all — lung cancer kills more Americans every year than breast, colon, and prostate combined, and yet receives a relatively paltry amount of research funding. Very distressing!
Data from 2009. Funding figures include NIH and DoD funding.
So, what can we all do to change this picture? Stay tuned for my next installment.
Nothing really new to report medically, other than a higher CEA number from my recent blood work at Kaiser. Without going into it too far, the CEA number measures a particular protein in the blood that can be a cancer indicator. It’s primarily used as a marker for colon cancer, but is sometimes used for lung cancer, although it is not considered a reliable indicator. Anything under 5 is considered normal. When I was first diagnosed, my CEA was in the 30s, but declined to less than 5 after about 4 months of chemo. Now the number is 49, the highest yet by far. The docs say not to worry since many things can influence the CEA measurement — such as dead cancer cells — and there is no information on how the criz might be effecting this aspect of my blood chemistry. Hope the experts are right!
PF-02341066 -- aka crizotinib
We’re just back from a week on Lopez, our first visit of the year. The yurt came through the winter unscathed and it was of course nice to be back. There are a dozen or so pregnant cows grazing in the meadow, the pond is full and overflowing, eagles are everywhere, and daffodils and stinging nettles are blooming all over the island. Turns out you can eat the latter (according to our local friend Randal they are ‘especially good for women’), so Leslie picked a bunch and fried them up in a curry one night (we still don’t really know what they taste like). Who’d have known?
Spring was in the air at the yurt.
Our new high-tech kitchen tarp (thanks Robin & Vicki!) performed well in the rain.
Cows are grazing in the meadow.
Steve and Rob on a rainy day hike.
Calypso orchids were beginning to bloom in the woods.
We sighted many bald eagles -- here, an adult...
...and a juvenile.
It’s ‘mud season’ up there: it rained almost every day and was around 40 degrees at night – but we were quite toasty inside the yurt. In fact, reading a book by the fire with a cup of tea in hand was made even more delightful by the rain pounding down on the roof. Newlyweds Jason and Katie, along with their dog Tabitha, came to visit from Vancouver over the weekend, so we checked out all our favorite beaches and trails together. Katie particularly enjoyed ‘shopping’ for free stuff at the Exchange, which is the fancy name for the Lopez transfer station. A lot of our yurt furnishings have come from there, too.
Rob, Katie, Tabitha, and Jason at Spencer's Spit.
It’s finally spring in Marin County, so we’ve been going on longer hikes lately. We haven’t been sailing for a few weeks, but Leslie did go out to watch Hank’s return to the local Etchells fleet after a 10-year hiatus this weekend. Sailing with boat owner Lawrence Pulgram (bow) and ‘Bio Bill’ Barton (middle), Hank won the season opener by a point in a 10-boat fleet, taking three bullets in the five-race series. Hurrah for Hank!
Hank, Bill, and Laurence.
We had a good visit to Stanford last Thursday, although it always takes way longer than we expect. There’s not really much news — after three weeks on the criz, Rob is doing well, although he was instructed to take it easy on his re-twisted ankle (no hikes for a week or so). However, there has been some news over the past month about crizotinib. Specifically, Pfizer received Fast Track status from the FDA for its New Drug Application (NDA). The Cancer Grace blog provides a good summary of the latest criz biz – including the closure of the Phase III trial that Rob was initially enrolled in. Now, everyone with an ALK rearrangement will be put into the Phase II trial and receive the drug. This is really an indication of how fast things are moving — only about 10 weeks ago Rob was randomly assigned to the control arm of the Phase III trial, and received docetaxel along with all its side effects.
Of course, none of this changes anything for Rob — he will continue to get the criz as long as it proves effective. He appears to be coughing less and less, so we are hopeful that the tumor is once again shrinking. Time will tell.
With the Sugarbush ski area in the background, this is an iconic barn in this part of Northern Vermont.
We’re back from a great trip back East to visit Rob’s family – more on that later. Yesterday we met with Dr. Liu to review Rob’s most recent CT scan, taken on Tuesday. The good news is that cancer in his abdominal lymph nodes is now undetectable. The bad news is that the primary tumor in his right lung has grown slightly, indicating that the current therapy isn’t working as well as it was previously. All Rob’s blood and urine tests were in their normal ranges except for the CEA number which has risen slightly over the past two months – another indication that the cancer is progressing. This progression means that we are now, with Dr. Liu’s help, working diligently to get Rob into the Pfizer crizotinib trial at Stanford Medical Center.
I’ve been trying to stay two steps ahead by doing all the research necessary to get Rob enrolled in the trial, and since he tested positive for the ALK mutation (crizotinib is specifically targeted at these mutations) and is in otherwise very good health, we are hopeful that he will meet all the criteria. This is not a slam dunk. Only about 300 people will be enrolled in the trial world-wide, and Stanford has 8 slots (Rob always wanted to go to Stanford!). The trial is a randomized, open label trial of crizotinib vs. the current standard of care (pemetrexed or docetaxel). This means that a computer randomly decides which arm of the trial each patient is assigned (the new drug or the control) – i.e. there is a 50/50 chance of getting the crizotinib. If a patient’s cancer progresses on the control arm, they will automatically be put into a Phase II trial that guarantees them the crizotinib. Confused? So were we when we first started researching all this. There’s a good overview of crizotinib and the trial by Dr. Camidge at this link.
Other than knowing that the cancer is again growing in his lung, Rob is still in fine health and able to do the things he enjoys, such as sailing this past weekend on Yucca in the Jesscia Cup (they won) and hiking again now that his ankle is better. His immune system is healthy enough to allow him to go out in public and live a normal life, though he does tire more quickly than before. Unlike many cancer patients, he is neither bald nor emaciated, and his spirit is good. Though disappointed that the current chemo regimen (Alimta and Avastin) seems to have become ineffective, we are convinced that getting on the path to crizotinib is the best shot we have. We’ll keep this blog updated more often in the next few days and weeks as we learn more.
On a happier subject, we had a terrific visit with friends and family last week in New England. It was a bit of a whirlwind, going between four states and four different houses in eight days. In order, we stayed at Marnie and Scott’s nice new house in Cranston, RI (in a section of mostly Victorians near the water called Edgewood) and enjoyed seeing Dan and Kim in Newport for dinner; Mom/Marge’s house in Mystic, CT; Marnie and Scott’s cabin (‘The Barn’) in Fayston, VT with the family; Stephen Kavanagh’s house in Leverett, MA; then back to Mystic for the final night. Lots of packing and unpacking!
Falls colors at the beaver pond, a short walk from the Barn.
Scott, Rob, & Marnie at the beaver pond.
With two woodstoves and a fireplace to heat his home, it's no wonder Stephen won the firewood chopping contest!
Betsy, Stephen, Leslie, & Rob at the Barn.
Rob, Mom/Marge, Marnie, & Scott in Vermont.
We had a lovely stay with Marnie and Scott at their new home in RI.
Rob envies Stephen's shed/chicken coop.
The leaves were somewhat muted in color this year (I’m only showing the most colorful images), something to do with big rains before we got there. Still, it was wonderful to see everybody and to be back East for awhile. Just as we have decided there is no place better than the Northwest for summer, there is no better place than New England during the fall!
An old maple syrup shack in Vermont.
Just another scenic Vermont barn.
Leslie and Rob shop for pumpkins in Deerfield, MA.
Fall colors in Vermont
A beautiful fall day in Vermont.
