Monthly Archives: December 2015

The underscore

After reading the post about losing my friend Ginger, another friend of mine commented that ‘her long time in remission has to be a triumph of its own’. Well yes, absolutely. And it made me realize that I left out one of the most remarkable aspects of Ginger’s story. Just prior to her diagnosis, Ginger, recently divorced, had travelled to Israel and met the man who would become her second husband. Post diagnosis, she experienced almost a second lifetime, one very full of joy. When I met her she was recently widowed and embarking on yet another chapter.

Ginger’s life was inspirational/aspirational for me. And although the details differed, she provided me with a role model of what could be if I only had the courage to really go for it.

I’m not talking about cancer here, but rather my divorce. It’s not an experience that I’ve shared very much about but it was hands down one of the bravest things I’ve ever done.

When I tell people I am recently divorced they say they are sorry. Well, I’m not. It requires a lot of hope, faith and optimism to start over when you have cancer, but it was something that needed to happen and honestly, if I was strong enough to do this, I can do anything.

I gained so much from my friendship with Ginger and I shall miss her so, so much. My last email from her was a month ago and it sort of captures the essence of our friendship—a little bit of cancer, a whole lot of caring:

I saw you all over the Globe. Good article, but you are so much better in person! 🙂
Good luck to Peter!
I went in for chemo yesterday and they sent me home- too weakened. But I will try to build myself up again. It’s partially the blasted antibiotic until next Sat. Just went down on the bicycle. Have to try.
Have you tried a dating site yet?
Much love back, g

____________ ❤

 

This part’s really hard

When I was diagnosed with lung cancer I immediately understood that loss was going to play a big part in my life. What I didn’t understand was that it wouldn’t all be personal. You see, I never anticipated becoming close to so many others with cancer—it just wasn’t part of my initial game plan.

However, once I was restaged to IV I knew I couldn’t go it alone anymore and I began to seek out others with lung cancer. Not long after I also took my first steps into advocacy and before I knew it, I had a lot of friends who shared my diagnosis.

The upside to these relationships is obvious–no one knows better what it is like to have this disease than someone who is living with it. The downside is that cancer is a brutal and relentless foe and a lot of my friends haven’t made it.

Each time it’s a real punch in the heart.

Yesterday I learned that my dear friend Ginger Wyler Saunders had passed away. I met Ginger some years ago in the Whole Foods down the street from MGH. We were sitting across from each other at a crowded table during the busy lunch hour and all was chaos around us. She looked at me and said ‘We are the two quietest people here.’ With that we began to chat and I learned that she had also been diagnosed with lung cancer–twenty six years earlier. I think I asked her if I could touch her–I was so amazed to meet someone who had lived for such an extended period post diagnosis.

Anyway, we became pals. We emailed, met for lunch, and called occasionally as well. Sadly, Ginger was diagnosed with a second cancer; ovarian. She fought tenaciously but gained little ground. Yesterday her daughters let me know that she was gone. Today I sat at what I thought was perhaps the same table at Whole Foods. And I wept rather openly as I ate. I love you Ginger–cancer can’t take that.

Linnea and Ginger

Linnea and Ginger 3/11

Linnea live (I like the sound of that)

This video was recorded at the annual LUNGevity Hope Summit in 2014 and fits in perfectly with the theme of clinical trials. When I refer to starting a new trial, it is for PF-06463922 or lorlatanib (which has kept my cancer stable for 18 months now–woohoo!). I’m a little breathless and hoarse as my cancer was advancing again. I noticed immediately how fast I am speaking– markedly slowed speech has been a side effect of PF-06463922.

Slow, fast, hoarse or not, the most important message here is one of hope (thank you LUNGevity). When I mention going from cure to living longer I am talking about accepting the fact that I would never be cured. That’s a difficult concept to embrace but in order to make it even remotely acceptable I found I needed to replace cure with a potentially obtainable goal—becoming an outlier. At ten plus years (eleven, in April) I am there.

Secondly, the importance of options. When diagnosed in 2005, the first hurdle I hoped to jump was qualifying for surgery. I had nineteen lymph nodes and most of my left lung removed followed by four rounds of adjuvant chemo and yet my cancer returned almost immediately. Two strikes, and I’d been informed that treating lung cancer was basically three strikes and you’re out. My first clinical trial in 2008 was a long shot. I was thrilled beyond belief when I responded to crizotinib, but also understood that it represented a temporary fix and that there was nothing else out there once it stopped working.

Thankfully, that’s no longer true. Sadly, there aren’t viable options for everyone with lung cancer. Medical research got me to where I am today (alive!) but we can’t stop now.

Taking the leap into clinical trials

I was initially diagnosed with non small cell lung cancer in April of 2005. My tumor was large (5 centimeters); a poor prognosticator. However, it had not spread beyond my lungs and I was staged at IB. One week after diagnosis I had the lower lobe of my left lung removed. As I was recovering from surgery my new oncologist introduced himself; Dr. Tom Lynch. I had no idea back then, but I was incredibly fortunate to have Tom select me as a patient. The reason behind his coming to me rather than the other way around? As a young (age 45) non smoking woman, I fit the profile of someone who might be EGFR+ and Tom was an early innovator in the investigation and treatment of EGFR+ patients.

I tested negative for an EGFR mutation but in the process acquired arguably one of the best oncologists in the world; someone who was always forward thinking and cutting edge in his approach to treatment. In fact, I was offered a chance to enroll in my first clinical trial soon after surgery. Because of the size of my tumor, adjuvant chemo was indicated and a trial that would include the addition of avastin was proposed. I was having a difficult time even being convinced to have chemotherapy (Tom was adamant) and I couldn’t wrap my head around the possibility of also being a medical research subject. As it turned out I would not have been a good candidate anyway–I am a bit of a bleeder and I was coughing up blood for weeks post lobectomy (there is a small but significant increased risk of serious pulmonary hemorrhage secondary to avastin).

Fast forward to September of 2008, two months after I’d been restaged to IV and advised that I likely only had three to four months to live. At my scan review after two months of tarceva–tried as a last ditch effort even though I was EGFR-, there was nothing but bad news from the radiologist. However Tom shared that a sample of my biopsy had been submitted for further genetic screening and had come back positive for an EML4-ALK translocation (another example of how ahead of the pack he was—the ALK mutation had been identified as a driver in NSCLC only months prior to that).

As we discussed the significance of this finding we also reviewed my options going forward. The way Tom saw it, there were four possible scenarios. I could stay on tarceva, return to traditional chemotherapy, do nothing (that option only underscored how serious my situation was) or attempt to enroll in a phase I clinical trial that targeted ALK mutations such as the one that was driving my cancer.

Would you believe me if I said I never hesitated but instead leapt at the opportunity to be in a clinical trial? Why now but not back in 2005?

This is why.

This image of my scan says it all. The upper lobe of my left lung was now almost completely clouded with consolidated ground glass tumors which had spread to my right upper lobe. And I had been told that I might have three to four months to live two months ago. The math was easy—I had almost run out of time and out of the four options I’d been provided with, only one seemed to offer a glimmer of hope.

And glimmer is the operative word. There was no precedent for me back then—no reason to believe that this trial might actually prove effective. All Tom could offer me was the fact that I had been preceded by one other participant at MGH. ALK+ like me but so debilitated by disease that they were confined to a wheelchair. Their initial response had been extremely encouraging, to the point where the wheelchair was temporarily abandoned. But then they had died, in part due to the toxic effects of the trial drug on their liver.

So this is what I knew. One before me with a promising response who had succumbed both to disease and to the toxic effects of therapy. That the experimental therapy could in fact prove fatal to me as well. But that my cancer would certainly kill me if I did nothing. An easy choice, after all.

And so, on October 1 of 2008 I had my lead in dose of the drug that would eventually be known as Xalkori.

 

Soldier in the war against cancer

Some of you may be wondering where that nice girl Linnea went. Well, beneath my relatively calm, cool facade lurks someone who simply won’t stand down if I feel there is something that can be done to make a situation better. And in this case, any change that comes about is going to happen only after some intense dialogue. In others words, we’re just getting started.

Secondly, I want to make it clear that I am not thinking only of myself. I was in the right place at the right time and have been fortunate to have been breaking trail ever since. As I have pointed out to those willing to listen, very few people in the world have had the opportunity to be in three phase I clinical trials—generally people died while enrolled in their first trial. There are going to be a lot more folks coming down that trail of multiple trials (hallelujah!), and I feel a great responsibility to make the path ahead as accessible as possible.

I also don’t wish to downplay the additional psychic benefit that I and my fellow trial participants get out of knowing that we are making a viable contribution to medical research. Take twelve minutes to watch this video about David Phillip Vetter, the child once known as the bubble boy. His mother dreamed that one day he would leave the bubble and engage in research himself. Ultimately it was his personal ordeal that made the greatest contribution.

Most of us fantasize about doing something significant for mankind and finding a cure for cancer is at the top of the list for many. We can’t all be scientists but there is another way to advance medical research. In the war against cancer those of us who participate in clinical trials are soldiers on the front line, and it is time that we be accorded the same respect as veterans of other wars.

Dear Pharma;

For all but one of the past seven years I have served as a peer reviewer for the CDMRP. It is perhaps the toughest form of advocacy that I have undertaken but also one of the most rewarding. I never got around to mentioning it (oh, I am so behind!) but last summer I was featured as a consumer reviewer on the CDMRP site. I was honored as I am to simply serve as a peer reviewer and I encourage any of you who are interested to apply.

My featured story gives a shout-out to medical research and segues nicely into the next part of my post, which offers a slightly more critical view of clinical trials.

The thing is, I ❤ clinical trials 100%: I absolutely would not be alive today had I not had the opportunity to enroll in a clinical trial back in 2008. Because of how far down the treatment pike I have come, clinical trials are my next best hope and I am keeping my fingers crossed that when the time comes, there will be yet another in which I can enroll.

Unfortunately, clinical trials have a bit of an image problem, as many people consider them risky and a choice only for desperate people—something I can’t really argue with. When I enrolled in my first clinical trial it was a different time; one with absolutely zero expectation of success (and yet a wild fleeting hope, which was the motivation behind my decision to enroll). However, with the advent of targeted therapies as well as a sudden wealth of experimental therapies to treat NSCLC, more and more people are enrolling in not just one, but several clinical trials.

The previous paradigm was one which assumed that participants in trials were likely on their last leg. Issues relating to quality of life were simply not considered. I’ve now spent almost a tenth of my life enrolled in a clinical trial and last summer, after Stanford came out with a report about the cellular damage exacted from each CT scan, I sat down and counted how many scans I’d had. And I was shocked.

Since then I’ve been trying to find a sympathetic ear. At the end of our first day of CDMRP peer reviews this year, I chatted up the right person in the lounge. They connected me with someone from the pharmaceutical company who is the sponsor of my trial and I sent them this email. I’m sharing it with you now because a member of my blogging community recently asked the question online as to whether or not it was better to stay in a trial or to switch to prescription once a therapy has gained FDA approval. It was my viewpoint that if it meant a decrease in scans, I would switch to prescription.

So back to the image problem. Only 3-5% of cancer patients enroll in clinical trials and I believe there is the potential to increase those numbers. And I think it might well start with really recognizing the contribution trial participants make. How about just saying thank you—at the end of every peer review I receive a nice note from the Department of Defense thanking me for my service–that gratitude and recognition never grows old.

Dear Pharma:

Please know that I don’t feel that this is under poor circumstance—I would just like to start some dialogue. When someone is feeling disenfranchised, the first thing they want is to feel heard.

I would love to speak to you on the phone and would also welcome an opportunity to share my perspective with a larger audience. There is a lot of buzz about patients as partners but we can only be a partner if we have an equal voice. I am grateful for and a champion of clinical research (my eighteen year old son had an internship at the Koch Institute this summer, and was engaged in pancreatic cancer research). I am also only too aware that I would not be alive today without clinical trials. However, as this is my third phase I clinical trial, I am in a unique position to offer some observations about how that process can be made better for patients.

A couple of talking points that I would like to discuss:

1. The loss of autonomy. As a patient becomes a participant they lose some control. Per my issue with the number of CT scans I’ve had—even my oncologist was surprised when I told her that I had added them up and that I’d had more than one hundred. Obviously, no one is keeping track of this sort of thing and with patients now going from trial to trial, I feel there should be some guidelines established and I don’t feel those should be guidelines of exclusion (because most of us will do anything to stay alive). Rather, I think that there should be a way to view participants as individuals and not just data. In my case the scans to my abdomen and head are totally uncalled for and expose my already mutable cells to additional radiation. Ideally there would be a way to follow me in a trial but to also take into consideration that I have a lung cancer that has and almost certainly will remain contained to my lungs.

2. Parking. That’s just sort of my bottom line. I was at my PCP’s yesterday (also at MGH—where I get my cancer care) and saw a bulletin board with notices for participation in clinical trials for things other than cancer. The participants would be compensated ($) and given parking vouchers. This always burns me up. Everyone makes money off of my disease but me, and I’m the one who has to have the stupid disease in the first place and I’m supposed to always be in grateful mode. As I tweeted a week ago–‘I ❤ being alive but I want free parking too’. I just don’t buy this inducement stuff. I also tweeted (I’m going all radical on you) in a conversation about patients as stakeholders—‘I don’t just want to be a stakeholder I want to be a stockholder too’. I’m really not kidding—I think it is time to talk about the major contribution early participants in clinical trials make. Another analogy—there would be no horse and pony show without the horses and ponies.

3. The story about my having to pay for Xalkori the second time around. Obviously there was no way for anyone to know I was the 4th person in the world (with NSCLC) to take this drug. But even if they had known, it would not have made a difference. I was able to afford Xalkori by prescription only because I qualified for financial assistance (not an easy process to go through when you are stressed, alone (I had recently separated from my husband) and, to be frank, once again heading down a path where if things don’t change, you will soon be dead. The whole experience kind of dashed any feeling I might have had that as an early participant I was somehow special. In truth, I feel early participants should be accorded the same sort of respect that veterans of the service are. We put our lives on the line, taking risks that many, many people never would. And our sacrifices benefit all.

4. I think it would behoove pharmaceutical companies to develop a patient advisory council. I have served on such a council at MGH for three years now and we have provided feedback on any number of healthcare initiatives.

5. Compliance. According to my nurse, compliance is only 60% in the trial I am currently in. Prescribing oral chemotherapies in a pill bottle just seems crazy to me. A blister pack (with a way to have a calendar printed on it) would be such a simple way to help patients with dosing. As one of those (often) non-compliant patients, I have such a difficult time recalling whether or not I’ve taken my pills and so skip a dose rather than risking double-dosing.

It is my understanding that only 5% of cancer patients enroll in clinical trials. I know little about the regulatory process but I do believe that if participants were treated better (induce us!) those numbers could rise. And I would love to be part of the conversation about how to make some improvements.

Gratefully,

Linnea Olson