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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.
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).
