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“Medicine sometimes snatches away health, sometimes gives it.” Ovid, born 43BC
Not much has changed in the past 2054 years! Most cancer treatments beat you up before making you better. Rob has fared remarkably well through the many different treatment regimens of the past two years. For the most part, the medicine was tolerable, and provided more relief than symptoms. Unfortunately this hasn’t been the case for the treatment of the sciatica. The five sessions of radiation to his lower lumbar spine, sacrum, and pelvis was uneventful, but the narcotic pain meds and steroids (to reduce inflammation around the sciatic nerve) have taken a serious toll. Hallucinations, mental confusion, and muscle weakness combined with other unfortunate side effects from the pain meds have made the past few weeks extremely difficult. However, it seems that the radiation is reducing the sciatic pain, and we’re finally able to start tapering Rob off the offending drugs. Only now, the fatigue from the radiation has set in, so although Rob’s pain is better, he is still extremely weak.
But wait, there is some good news. Rob’s latest CT scan, taken last week, shows that the cancer in his lung, lymph nodes, and liver — is stable! So, we just have to get him back on his feet so he can start to build some strength back and enjoy this reprieve, however long it lasts.
We have no plans for the holidays except for Christmas eve day when Rob will have a brain MRI to ensure that the WBR was completely successful in eliminating the brain metastases. It’s also our second wedding anniversary, a date neither of us expected to see at this time last year. We have some major celebrating to do!
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.
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 hope you all had as terrific a 4th of July as we did! We had a remarkable 12 days on Lopez, concluding with one of the most spectacular firework displays we had ever seen (more details and photos from the trip next week).
A beautiful day for kayaking! Rob and Steve with the Olympic Mountains on the horizon.
Nearing our picnic site.
Steve's pond now hosts a couple of kayaks - great fun for kids of all ages!
A huge display for such a small island!
We returned on Tuesday (actually Wed. morning) after a very long travel day, we saw Dr. Liu on Wednesday, and Rob is now at Kaiser having his chemo treatment. The visit with Dr. Liu was routine, but he gave us some new options to deal with Gemzar-induced fever and rash that Rob has been experiencing. The good news is that he does think that the Gemzar is working since Rob’s CEA number has been slowly decreasing and his cough seems to be improving somewhat. As for the next CT, it’s looking like it will be after the third treatment in this round, i.e., later this month, unless Rob’s symptoms worsen. So it looks like Rob will continue the Gemzar for at least another three weeks. The goal is to keep the chemo intensity high right now so it has the maximum effect, and get as much time out of the Gemzar as possible before moving to something else. We are awaiting the results of the genetic analysis from Mass General, which will be instrumental is determining the next steps.
As soon as Rob gets home from chemo, we are heading to Pinecrest to stay with Hank for a few days and help him open the cabin for the summer.
Sorry about the long delay between postings. The last two weeks have been a blur, but things are almost back to the ‘new normal’ now.
Our trip to New England was, as always, too quick – but it is starting to look like we’ll be spending a lot of time there later this summer. The primary reason for our trip was to consult with Dr. Lecia Sequist at MGH about ‘Plan E’, i.e., drug options when my current chemo, Gemzar, is deemed ineffective. Leslie explained the results of that meeting in the previous blog post, and nothing much has changed since then. Unfortunately, I’m still coughing a lot — which may mean we’ll be back in New England sooner rather than later.
We almost always always fly on Southwest Airlines into Providence’s Green Airport, which gets my vote for the coolest airport in the country. It’s small, the lines are short, there are two Dunkin’ Donuts (yuck!), and — best of all — there is a cool Mount Gay 30 sailboat, rigged and going upwind on port tack, permanently on display in the lobby. It’s a fitting welcome to the ‘Ocean State.’ Marnie and Scott live about ten minutes away in Cranston, RI, so we started and ended our trip there, also as usual. We enjoyed seeing both my niece Katherine, who just graduated from Brown that weekend, and nephew Philip, also a recent Brown alum. Philip has been working in NYC for the last two years, but will be moving to Washington, DC, this fall to attend Georgetown Law School. Katherine, a Literary Arts major (writing, journalism…), is looking for a job, and we don’t envy her that task in this economy. They’re both terrific young adults, and we are all very proud of them!
Rob and the Young family - Marnie, Katherine, Scott, and Philip - all redheads and Brown grads!
We also stayed at three other excellent B&B’s during the week — my Mom’s house in Mystic, CT; the Barn in Fayston, VT (my sister’s ski cabin); and Stephen’s ‘farm’ in Leverett, MA. New England is green and lush at this time of year, as well as humid and buggy. Leslie is still covered with black-fly bites, while I went unmolested — apparently they don’t like people on chemo? One other place we visited — Northampton, MA, where Stephen’s girlfriend Betsy lives — is worth mentioning. We ate several meals on the main drag there and decided that Northampton, home of Smith College, has got to be one of the people-watching centers of the universe. We felt old and almost out of place there, as none of us sports tattoos, dreadlocks, piercings, combat boots, purple hair, etc.
Marnie, Rob, and Scott at the now overgrown beaver pond - Fayston, VT.
The New England Peace Pagoda - Leverett, MA.
We’ve been home for almost a week now, and in that time I have had seven needles jabbed in me for various reasons, including a gigantic one for my liver biospy. That tissue is back at MGH by now, undergoing genetic sequencing to find out how the cancer has mutated in the last 19 months (funny to think that part of me got on a plane and went back East without the rest of me!). I’ve also had another round of chemo, without the fever this time, and been back to Stanford for my one-month post-criz follow-up visit with Dr. Wakelee. I’ll miss going to Stanford, which was more of a resort than a hospital — but it’s on to Harvard now!
We’ve also seen a lot of friends lately, including the ‘PV People’ for lunch at our house on Sunday. Mike and Lowe, Pam and Mark, and Lou and Laura all have deep connections to Puerto Vallarta and all know each other from down there. Mike, one of the original Yucca crew, and Lowe are full-time residents, while Pam and Mark, who Leslie met on a dive trip in the Solomon Islands years ago, split their time between the Bay Area and their house in PV. Both couples have been incredibly generous over the years in letting us crash with them down there! Lou and Laura, who sold me their orange Santana 20 Urban Guerilla back in 1980, have been cruising and racing their Beneteau 42 Cirque in Mexico each winter for the last three years, using PV as their base. It was a great afternoon with old friends, filled with laughter and stories.
Mark, Rob, Leslie, Mike, Lowe, Laura, and Lou (Pam is behind the camera).
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.
Today Rob started a new chemo regimen. He will receive an infusion of Gemzar once a week for three weeks, and then will have one week off. Unfortunately this schedule puts a kink into many of our summer travel plans, but the doctors think that this is the best next step, so that certainly trumps travel. The most worrisome issue now is that statistically only 10-15% of lung cancer patients have a significant response to chemo after the first couple of drugs. This is thought to be due to the pervasive way in which the cancer cells mutate. So we wait. Since Rob’s cough has been getting worse again, we will have an early indication that the drug is working if the cough starts getting better. In the meantime, I have connected with an oncologist at Massachusetts General Hospital who is involved in clinical trials of several other ALK-targeted drugs. There is one potential clinical trial ongoing and several more expected this year. We will see her for a consultation at the end of the month. Who knows, now that Rob flunked out of Stanford, maybe he’ll be admitted to Harvard.
For now, we are going to spend a few days up on Lopez, where it’s nice to escape the day-to-day issues of doctors, chemo, blood tests etc.
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.
