Travel and Transition

A very very very belated Happy Holidays and Happy New Year everyone! I hope 2016 is off to a great start for you all. I can't believe it's already March!!! Time really does fly when you're having fun... or sleeping. My apologies to those who follow my blog for my long absence. I'm still alive and kickin'! Two main things have kept me busy the past few months: traveling and preparing for my next line of therapy...

TRAVEL

Since my last blog post, S and I have spent quite a bit of time on airplanes.... Yes, more travels! In late November into December, we visited Tokyo, Singapore and Bali. Traveling overseas always makes me forget about life's little woes because, as I realized, senses get overloaded by new experiences (especially in Tokyo). There was no room to notice chemo side effects ... except when I ran that high fever on our 11h flight to Japan (3 days after chemo!). At least it helped me sleep. In a nutshell, Tokyo/Japan was unlike any other country we've been, and as our friend commented after her trip there... It may have ruined all other future countries for us. It was clean, organized, friendly, and delicious! We only had 3 days there but already can't wait to go back to explore the rest of country. We had even less time in Singapore, which was our "layover" country. Overnight was not enough time there but a big thank you to M&R (S's cousins) for their hospitality, for taking us out for yummy seafood laksa (at 328 Katong Laksa), and for getting their Uber driver to take us to the airport. Finally, Bali was not exactly how I pictured it but a cultural and spiritual experience nonetheless. I guess I expected the entire island to be an ideal place to meditate... Ha! The touristy areas (Kuta and Seminyak) were polluted and crowded even in low season. We spent most of our week at Seminyak Beach, battling the waves and sipping drinks :). Ubud (in the centre of Bali) was better suited to our preferences but my lungs didn't appreciate walking the hills. My stomach, however, did appreciate the daily coconuts and the yummy vegetarian food, especially at The Elephant and Earth Cafe :). After a week in Ubud, we missed the beach and spent our last two nights in Nusa Dua at a resort. Some of our favourite pictures from this East Asian trip are below.  If I wasn't a week overdue for my next chemo treatment, we would have stayed longer overseas. Life is always better when you are on tropical vacation... Sigh. 

So we were back in frigid Calgary for a week in December, just enough time for me to have chemo #10 and recover from the chemo side effects, before we jumped on yet another flight for southern Ontario for the holidays. Thanks to mom, my sisters, my aunt, and S's 40th birthday feast, I managed to gain a few pounds while mostly sticking to my diet :). When we finally returned home to stay, needless to say, we were exhausted. But chemo#11 came and went quickly and added to my ever increasing fatigue. I feel like I slept most of January away. 

By February, the west coast was calling me (especially since there was a seat sale!) so off we went to visit our wonderful friends in Victoria. Victoria, not surprisingly, was already experiencing their springtime blooms in Mid-Feb! We love being near the ocean, the warm and humid weather, and the organic, relaxed lifestyle. Makes me want to move there... Sigh. 

At the entrance to Meiji Shrine grounds in Harajuku, Tokyo

Freshly made sushi for breakfast at Tsujiki Fish Market... yum yum!!

Seafood laksa in Singapore... delicious!

Tanah Lot (Temple by the Sea) in Bali

Beautiful sunset at Seminyak Beach

My view from the lounger on the beach in Nusa Dua

Gorgeous crocuses in Victoria's neighbourhoods in February!

TRANSITION 

It's time for a health update! I had a CT scan in February. It was long overdue thanks to our vacation and the holidays, but there didn't seem to be any urgency since I had no concerns and my blood work was relatively good...  That is, until my tumour markers started to rise in late January. Despite still feeling well, the scan revealed growth in one nodule but improvement or stability elsewhere. The radiation I had to my upper left lung almost a year ago has resulted in scarring, which may be why my shoulder pain hasn't returned but the shortness of breath continues to persist, maybe even worsen?  I continued with two more chemo cycles (that's 14 chemo treatments in total) since that discovery while my oncologist arranged for my 3rd line treatment. In the meantime, new symptoms have arisen: knee and back pain, swollen fingers and toes, and increased frequency of headaches. None of these are debilitating but the achey knees do slow me down on bad days... damn stairs. Dr. B thinks that some of these symptoms could be due to longterm treatment with Alimta (swollen fingers, joint pain) but after our last discussion, he signed me up for a gazillion appointments and, upon my request, started me on Celebrex (shown to improve chemo efficiency and targets the apoptotic pathway in cancer cells, in addition to treating arthritis. Bonus!). SO... this week, I've had pulmonary function tests, consulted a pulmonologist (who informed me that my left lung is "getting smaller" and that I now have about 70% of a normal person's lung volume... explains a lot), got a full body bone scan and will be getting a brain MRI later today. You're probably wondering what my 3rd line treatment is?  Next week, I have an appointment to see a radiation oncologist specializing in stereotactic radiosurgery!! I'm kind of excited about that because I've heard good things about SRS.  Hopefully, I'm a candidate. But that's not the official 3rd line therapy. Dr. B applied me for immunotherapy with NIVOLUMAB.  I signed up officially with the pharmaceutical company (BMS) a few days ago.  As they tell me, as soon as the paperwork is processed at my cancer centre, they'll arrange my first infusion.  With so much hype about how well immunotherapy is working for certain cancers, including lung, I can't help but be optimistic... but always with a bit of caution. Fingers crossed.

In all honesty, I'm feeling pretty darn good and keeping happily active, especially now that my knees are better (thanks Celebrex!).  My oncologist has a great plan laid out for me.  I've learned not to stress over scans; why worry when you can't change it?  I'll just take it as comes...

Let's Talk About Lung Cancer 2015

We are well into November and Lung Cancer Awareness Month. I hope you've had a chance to bring up lung cancer in conversation sometime this month to help raise awareness to this rarely spoken of, and thus much underfunded, disease. Here are some topics and facts that may stir up some conversation, if not at least spark your interest in lung cancer.

1. The smoking stigma. It's simply not true. It's certainly not helpful. Whether or not someone gets lung cancer from smoking or not, the smoking stigma hurts us all. Lung cancer is the #1 cancer killer in Canada, US and worldwide yet it receives very little attention, very little compassion and a disproportionately low amount of funding for research (per cancer death) and the smoking stigma is largely to blame. Why? The misconception that only smokers get lung cancer leads to the belief, then, that lung cancer is self-inflicted, that we are to blame for our disease and that we don't deserve the same support, compassion, or chances of survival. This is cruel and unfair. Whenever I see a smoker, I now understand they are someone with an addiction. Fortunately, with widespread anti-smoking campaigns (although we really need to move beyond this!), everyone knows that smoking is bad for you. The truth is, the majority of smokers have managed to quit their nicotine addiction; certainly a difficult addiction to break. In fact, up to 80% of those diagnosed with lung cancer are non smokers (15-20% have never smoked and 40-60% quit smoking years even decades ago). Yet we are still made to feel that we deserve this, that we don't deserve any support. NO ONE DESERVES CANCER. Anyone diagnosed with cancer deserves a fair chance at life regardless of past lifestyle choices. Stop talking about who deserves what and learn the facts about lung cancer, show support and empathy toward those affected, give lung cancer the attention it deserves and maybe one day, the donations and research dollars, that are desperately needed to save lives, will match the incredible magnitude of this disease. 

2. The incidence of lung cancer in never smokers is on the rise. In one study, it doubled (13% to 28%) between 2008 and 2014. According to the article reporting these findings, women make up 2/3rds of that group. The reason for this is still unclear. However, based on my own research, the HER2 mutation, known to cause breast cancer, has also been found in a small percentage of lung cancer patients. In addition, journal articles published recently stated that there may be a link between estrogen receptor expression and lung cancer.

3. Awareness and early detection save lives. Do you know what lung cancer symptoms to watch out for? 

A new cough that doesn't go away

Changes in a chronic cough

Coughing up blood

Shortness of breath

Shoulder, back and/or chest pain

Wheezing

Repeated bouts of pneumonia/bronchitis

Lung cancer typically doesn't cause symptoms in its early stages. Unfortunately, by the time symptoms are noticed, the disease is already advanced. The best way to detect lung cancer early, and saves lives, is to establish a screening test. If you are a smoker, former smoker or have a family history of lung cancer, ask your family doctor for low dose CT chest scans annually. Attempts are being made in Canada to get approval of annual CT scans for those at risk of lung cancer. This wouldn't have helped me, since routine screening isn't recommended for non-smokers, but it could potentially save thousands of lives, and raise our overall 5 year survival rate well above 17%. 

4. So if it's not smoking, what else could be causing lung cancer? Radon is a naturally occurring, colourless and odourless gas that seeps from soil into homes. It’s the second leading cause of lung cancer, but the first among non smokers.  Recently, research at the University of Calgary found that as many as 1 in 5 Southern Alberta homes have levels of radon exceeding Health Canada’s maximum acceptable amount. Radon gas levels in homes vary across regions. Order a radon test kit (about $45) and get started on checking your levels today. It certainly made me feel better knowing that the air I am breathing in at home everyday is safe, at least from radon. 

Other possible contributory causes of lung cancer include air pollution, workplace carcinogens, and cancer treatment. According to the WHO, in 2010 air pollution caused 223,000 deaths worldwide. Be aware of what you are breathing into your lungs. 

Another Scan and Another Birthday

I got to celebrate another birthday since my diagnosis! I kept it quiet this year since I've never been one to make a big deal out of any of my birthdays... And the federal election was going on at the time (not quite the same level of drama as American politics but plenty enough for us Canadians!).  I am so much more grateful for each birthday and the opportunity to grow yet another year older. By the way, don't ever tell me you dread getting older because it's an opportunity that some of us may not get to have. Embrace your age! Be grateful for each day, each month, each year that passes you by. Much love and gratitude to my family and friends for all your birthday greetings, wishes, and thoughtful gifts. For future reference, I ask that instead of gifts (for any occasion), please consider donating to a lung cancer program/organization, a reputable cancer research foundation, or any charity of your choice. Thanks so much! 

I haven't given a health update in awhile so this is long overdue. I had my latest CT scan in early October. I get blood tests every 3 weeks before each round of chemo. I completed my 8th chemo treatment, which has been sans carboplatin after round 6, last week. I had a brain MRI around that time too.  CT reports indicate that I am still stable. I used to always want to see tumour shrinkage reported but I've come to understand that being stable is just as good especially if I am pain free and breathing (reasonably) well!  Brain MRI found nothing interesting in my head:). Blood test results continue to improve since I dropped the platinum drug (carboplatin). I still have to deal with nausea and malaise/fever a few days after chemo, and fatigue, which I would now term as chronic since it never actually seems to go away. But I can't complain... Overall, I feel well enough to make travel plans again ;). 

Also, to clarify a question which I have been frequently asked:  When am I done my chemo treatments? Unfortunately, as with the majority of stage IV cancer patients, I will likely be on some form of cancer treatment the rest of my life. That is, I am not done with this particular chemo until it fails--when the scans show progression of the tumours. If that happens, which I hope is not for a very long time, I have to find another line of treatment. There are stories of stage IV cancer survivors out there who manage to achieve complete remission, at least for some time. I hope to be among this group of outliers someday, despite what the odds or statistics say. But, realistically, I am already researching my tentative next line of treatment. Fortunately, a few new, effective treatments for lung cancer are on the horizon. As always, prepare for the worst but hope for the best!

Last but not least, Lung Cancer Awareness Month (LCAM) is here!!! One of my goals this year is to make sure everyone knows that ANYONE WITH LUNGS CAN GET LUNG CANCER. Awareness can save lives! Please start a conversation about lung cancer this month. I'll share some interesting lung cancer facts (aka conversation starters?) in my next blog post. 

Blood Counts and Smokey Skies

Yes, I have been blog absent for much too long. To make up for it, I wrote a long blog. My apologies... For one or the other or both.

I have always associated the end of summer to be the start of September. Our weather is cooling. The days are noticeably shorter. The leaves are already changing colour. Unfortunately, the start of fall here means winter is just around the corner. But I can't complain because I am grateful for a wonderfully eventful summer and with my current treatments, which seem to be working, I was fortunate enough to enjoy that time.  My latest CT scan results from the end of July, after chemo #3 was "good". It was nothing spectacular because the radiologist compared it to the wrong "previous scan". I am either stable or a little better than stable...  Either way, I still consider it good news! Based on how much better I actually feel, I am going to say there's definitely some major shrinkage going on inside of me ;).

I now have 5 chemo treatments under my belt--a decent achievement considering all the scary stuff you hear about chemo. That's not to say I haven't had my challenges. The biggest concern has been my blood counts.  Carboplatin, along with other platinum-based chemo drugs, are known to knock out bone marrow function.  Your bone marrow produces platelets, red blood cells and white blood cells.  With each blood test before my chemo treatments, I saw these counts drop more and more.  After chemo #3, my hemoglobin count was low enough that my oncologist suggested I get a blood transfusion or delay the next treatment, which was not an option since I got into the habit of making travel plans between chemo treatments.  The drop in hemoglobin and, consequently, necessity for a blood transfusion was a surprise to me, I guess because I had adapted to the anemia and thought I felt "normal" although I did look somewhat pale. This was in contrast to my next, more severe episode of anemia just before chemo #6, which has been delayed a week. I'll get to that later. Anyway, with the second occurrence of low hemoglobin, I knew something was wrong. I was really pale, hypotensive, chronically fatigued, easily short of breath and I often felt like fainting... Ok, I actually did collapse once but I didn't pass out. My first blood transfusion after chemo #4, was a neatly arranged 3 hour stay at the hospital. Easy peasy, and came out warm and rosy :).  After I got over the chemo fatigue, I noticed and enjoyed the added bounce to my step! It also helped to improve my appetite :). Thank you to the two people who generously donated their O+ blood so that I wasn't at risk of complications from anemia (eg. heart failure). Unfortunately, borrowed blood doesn't last forever. And my bone marrow was still getting hammered by carboplatin. The "fainting" episode occurred on a Friday evening, which was 5 weeks after my first transfusion. We had to contact the on-call oncologist. By the time I spoke to her, I had regained some strength... as long as I didn't move or do anything. We agreed I should get some bloodwork done over the weekend and she would call with the verdict. A few hours after I got my bloodwork done on Sunday, the on-call oncologist called and told me my hemoglobin was once again "quite low". This time, I needed to go to Emergency for the transfusion. We "strategically" planned the trip to the ER in hopes of shortening our wait and stay; we had supper and packed snacks so we didn't need to worry about food and we waited until the posted online wait time was not ridiculous. Unfortunately, our hospital of choice was short on beds:(. We spent 10 hours, from admitting to more lab work to two bags of transfusion (thanks again very kind blood donors!!) to discharge, with a lot of waiting in between, at the hospital. We were discharged at 430am on Labour Day. Needless to say, despite the much needed hemoglobin boost I received, S and I needed a few days to recover from sleep deprivation.  We discovered later that, even though my hemoglobin recovered nicely, my platelets were also severely compromised when we reviewed the blood tests with the oncologist, who was subbing in for Dr. B while he attended the World Conference on Lung Cancer. We all agreed that a week's break would do me some good. So here I am, feeling a ton better after a great weekend of cycling and an easy hike in the Rockies, waiting for my last combo treatment with carboplatin. 

Dear Carboplatin, 

Thanks for helping me feel better by hopefully annihilating lots of cancer cells. I really appreciate it :). However, I don't appreciate what you are doing to my bone marrow. Sorry to tell you that I can't wait to be rid of you... Hopefully for a very long time. 

Sincerely,

H

P.S. Please try to be nicer to me if we do meet again. Thanks. 

Regardless of the chemo challenges, I have learned to savour the good times between treatments.  Anemia issues aside, I usually have two weeks of no debilitating side effects, of normal taste buds, of being free to do what I please :). 

So after chemo #3, we took a road trip through British Columbia, stopping in Fintry (near Kelowna) and Vancouver.  The guesthouse we stayed at in Fintry was exactly what we needed! It was secluded, comfortable, quiet and so peaceful... Despite the real threat of evacuation because of a forest fire down the road! 

  

Note water bomber in the upper left, in contrast to elderly couple in the lower right of photo happily biking by despite the proximity of the forest fire.

Even though we lost power and then water, we still enjoyed our stay... Thanks to the facilities at the provincial park next door and the bicycles that came with our accommodation! We "glamped" under smokey skies for two days. It was then onto Vancouver! We always love being back in Vancouver: the ocean, the mountains, the plentiful organic and vegan friendly options. Unfortunately, We were only there for two days also :( -not much time to visit and eat!  Vancouver was unusually hot and dry, at a level 3 water restriction when we arrived. What's with the brown grass?? (Un)Fortunately, it downpoured the day we left but, because this was Zoey's first trip to the west coast, we insisted on taking her out for a walk along the sea wall in Stanley Park before leaving.

A wet but lovely stroll along the sea wall at Stanley Park.

I don't think Zoey cared much for the sea wall. She didn't look pleased that we dragged her out there when it was raining cats and dogs.  

Wet Zoey... but why does her tail still look fluffy and dry?

After getting over the funk of chemo #4, and blood transfusion, we, with Zoey again, flew to Manitoba to visit our great family-like friends in Steinbach. This was a much needed clean eating (mostly), and restful vacation. We napped. We strolled. We ate from organic gardens. We watched Zoey get spoiled :). We also got eaten by mosquitoes... But I can overlook that ;). Much love and gratitude to CT and her family for taking such good care of us! 

Back at home, with no trips planned after chemo #5, we had to deal with the effects of yet another "nearby" forest fire. Due to the raging fires in NW USA, our southern Alberta skies were engulfed in dense smoke. Our air quality rivaled that of Beijing! Just stepping out for a few minutes affected my breathing and irritated my throat. Everyone, regardless of health, was advised to stay indoors. This lasted about a week. I had to stay indoors during that time except for appointments and such, which was fine since I was still quite tired after chemo. After the smoke cleared, we have been doing our best to savour what is left of summer!  And, take it from me, summer is much more enjoyable with clear skies, fresh air and normal hemoglobin levels :). 

Summertime with Chemo

I've had three rounds of chemo now. Happy to report that I am coping decently well with the treatments. In a nutshell, the pattern for me seems to be, battle chemo side effects (nausea, fatigue, brain fog, taste/appetite changes, muscle aches, malaise, etc.) for about one week after infusion then fully enjoy the following two weeks before my next round of chemo. With the medications, supplements and complementary treatments my oncologist, naturopathic oncologist and Dr. Block has me on, in addition to my super supportive caregiver and husband, the side effects are tolerable. Not fun but tolerable.  One thing I learned about chemo is it is very much a unique, individual response. Your attitude and preparation going into treatment does impact your experience.

Although I haven't had a CT scan since I started chemo so don't have physical evidence of how well I am responding, my energy levels have increased and my pains have decreased. The improvement was significant enough for me to want to try hiking again. Over two weeks ago, we endeavoured one of my favourite hikes in the Rockies, Grassi Lakes. Zoey was in heaven, off leash in the wild. It felt fantastic to be reunited with nature and strolling through the mountains again, even if I needed a few more breaks than usual. We made it to the lakes and enjoyed the serenity and beauty of our surroundings. We finished the hike relaxing on a picnic table with snacks, a good book and classical music. I have to thank chemo for making this possible... :).

Had to choose the difficult, more scenic route!

Zoey, in her element :)

We have a picture like this of Zoey when she was 4 mo old. My has she grown!

A Lady Slipper on the trail, one of my favourite wildflowers :)

Looking down at what I just climbed up... taking a serious break.

Basking in the sun at Grassi Lakes, elevation 1500m

Second Line Treatment

It's been a harrowing past couple of months. Despite all that we've been through, the roller coaster nature of cancer continues to teach me more lessons. Surrender to uncertainty. Accept what is, forget what could have been. Adversity will not break me but make me stronger. 

Before I say which treatment is next. Let me tell you about the ups and downs of clinical trials. When I was offered a spot on the Phase 1 trial in March, they told me I needed another biopsy--ugh. A few weeks later, after we got hold of the consent forms and read the criteria, we realized they could use archived tissue for testing which meant no need for a re-biopsy-- yay! Again, we waited for results. When it came, we were told there wasn't enough tumour tissue in the sample to properly test for the c-Met mutation, which meant they had to rebiopsy after all-- argh!!! Standing my ground, I reasoned that the mutation was not required since it was a phase 1 trial so why put me through another risky procedure? After a "global discussion", they agreed with me! Yayyy! So I said good bye to my daily Iressa and hoped that I wasn't one of those who would flare up after discontinuing the drug. At first I needed to be off 2 weeks (eek!) then they said 10 days and moved my prescreening tests up a week earlier. When the time finally came (after 2 months of waiting!), I underwent detailed CT scans, gave up a good volume of my blood, and signed forms. That afternoon, all but 3 enzyme tests came back, and all was good so far! They began the detailed symptoms, medication, etc history and told me to return early morning for my first dose! Exciting!!! 4pm, I get another call. One test came back abnormal (oh no!) but they were given permission to retest it the next day (phew). Next morning, the drug company changed their mind and they called me in to break the news. After all the ups and downs we had to endure, to get so close and not be allowed to enrol based on a likely erroneous test, we were devastated. That day, I learned to fully surrender to uncertainty and to the will of the Universe. That belief got me through the trauma and drama of the circumstances, and I actually felt liberated and relieved to know I can move on with chemo.

My oncologist and nurse were very helpful in getting me scheduled for chemo within a week of our call. This was always the plan so we were all prepared to move fast. After friendly bantering, and a lengthy discussion and negotiation on which chemo drugs I should be given, I am set to begin chemo tomorrow (carboplatin and pemetrexed). We spent the weekend enjoying the wonderful weather while gathering supplies and preparing myself and our home for my second line treatment. Thank you to our friends and family for your company, distractions, and support over the past couple of months. It's been quite a ride! But I am ready... Chemo, here I come! 

A Patient's Perspective on Clinical Trials

[My speech given at the University of Calgary on April 8th. Revised for privacy reasons.]

Before my diagnosis, I just celebrated 10 years of a rewarding career in healthcare. I enjoyed educating people and encouraging them to be proactive in their health. Outside of my professional life, my husband and I were avid travellers. Around that time, I had about thirty countries under my travel belt and had plans to add many more. I picked up running at age 14, had completed a half marathon and planned to someday finish a full marathon. Eventually, we had planned to start a family. 

But plans change. My story begins in the fall of 2012, when I started noticing shoulder pain. My colleagues and I thought it was work-related. There was no reason for me to think otherwise. But the pain worsened steadily despite the usual route of therapies: physio, massage, acupuncture, in addition to prescription anti-inflammatories and analgesics. A year later, my symptoms became unbearable. I became susceptible to frequent respiratory infections, and noticed increasing shortness of breath. An MRI investigating my spine incidentally discovered the single lung nodule that would set off a cascade of tests. A month later, in December 2013 at the age of 37, a biopsy confirmed the diagnosis: stage IV lung cancer (NSCLC, adenocarcinoma). The news was devastating and shocking. How can a healthy, young female who's never smoked develop lung cancer? Well, apparently, there’s a little known fact that never-smokers account for 15-20% of lung cancer patients.  But among the despair and grief that come with a cancer diagnosis, came hope. I tested positive for the EGFR mutation, which meant my first line of treatment was oral targeted therapy.  Within a week of starting gefitinib, my symptoms began to improve. Within 2 months, I was back to running on the treadmill.  I was even healthy enough to spend 2 weeks actively exploring and enjoying beautiful Iceland with my husband. This wonder drug gave me my life back. During that time, living with cancer was tolerable, almost normal except for some annoying drug side effects. Unfortunately, cancer figured its way around Iressa. About 11 months after starting gefitinib, my symptoms returned and progression/drug resistance became obvious.

When my cancer journey began, I intended on following my own advice and be proactive. Fortunately, with my health sciences background and connection with family and friends in the medical field, I wasn’t afraid to ask questions, or look beyond established standards of care.  From day 1, I knew the treatment options for stage IV lung cancer were very limited.  The 5 year survival rate was grim. I remember already inquiring about clinical trials the first day I met Dr. B. So, by the time drug resistance was confirmed, I had decided that enrolling in a clinical trial was my next step. Cancer forced me to learn to live with uncertainty. I knew there was never a guarantee of a good response to any cancer treatment and that belief helped me overcome the fear of the unknown that comes with participating in clinical trials. But I also realized that qualifying for a clinical trial requires accessibility, timing, and preparation.  A Phase 3 trial on a new drug was about to open in Edmonton, possibly even in Calgary. To get the ball rolling, a new biopsy was performed in a timely manner in Calgary but because the clinical trial was actually only available in Edmonton, to our disappointment, my husband and I had to make the 6h round-trip journey to Edmonton to meet the clinical trial team and sign consent forms so the tissue sample could be released to the Cross Center, then sent to the clinical trial approved lab for mutation testing. We were reassured that things would move quickly from there. But, a week later, we found out that there was another delay because a payment was required before the sample could be transferred. Finally, 6 weeks after my biopsy, I got the call. "No, I'm sorry, you don't have the mutation to qualify for the study". All that time and effort in travel, needless delays, and subsequent anxiety, only to find out I didn’t qualify. So what options, other than beginning chemo, did I have at this point?  Shortly after the rejection call, I received a follow up call from the Cross Centre. Would I be interested in enrolling in a Phase 1 study? I already have the mutation to qualify but another biopsy may be needed, this time in Edmonton.  Despite the many unknowns with Phase 1 trials, I knew this was my best chance to access a new treatment and hopefully improve my chances of long term survival. After doing my usual research on the trial drugs, I accepted the offer. Chemo can wait.  I knew finding another trial I would qualify for wouldn’t be easy. But again, this meant more waiting!  Wait for another biopsy to be scheduled. Wait for results. Wait to sign papers. Wait for more tests. Wait for more progression and increasing symptoms. Wait for the unknowns. But all this waiting will be worth it if this new drug offers me more time and a better quality of life.

Things to take from my experiences:

Why are Clinical Trials & Phase 1 trials important to patients?

As you can see in my situation, Phase 1 trials offered me the chance to access a new treatment where phase 2/3 would not have accepted me. For those of us with limited or less than desirable treatment options, clinical trials offers us new hope. More clinical trials, especially phase 1 trials, means more patients can qualify for more treatment options, potentially finding something that improves quality of life, extends life, or, at least, stabilize disease progression long enough until the next accessible clinical trial or breakthrough treatment becomes available. 

Another lesson I learned from experience, in order for patients to take advantage of Clinical Trials, trials need to be accessible!

1.  According to the Addario Lung Cancer Foundation (San Francisco), 85% of patients are unaware that clinical trials are an option.  Only 3% of patients actually enroll in trials [8% in Canada]. In my opinion, patients ought to be informed that clinical trials are a treatment option before first line treatment even begins. It is a personal choice, but patients can’t make that choice if they aren’t aware. Being informed early will also help patients plan for trials.  From personal experience, it takes strategy, research and preparation to know when and which trial to attempt to enrol in. Am I able to commit to the frequent follow ups, tests and travel time? Am I excluded because of the number or type of treatments I’ve already undergone? Have I progressed too far to enrol? Do I have potential for a good response in this trial? Patients should also know that clinical trials are not meant only for patients who have run out of options. They should consider them when the right trial is available, when they qualify, when they are still physically capable, when the risk of waiting is not life-threatening, etc.

2. Of course, the time needed to get to the clinical trial site can be a significant deterrent. Having to travel 3h to access a trial is not convenient.  Given the option, I would prefer not to ask my caregiver to take a day or two off work to accompany me to Edmonton, I prefer not to be taken away from my daily routines and the comforts of home, I prefer not to be taken away from my support network of family and friends in Calgary.  I prefer to spend what spare time I have enjoying life, not traveling long distances to and from frequent appointments. 

3. Lastly, unnecessary delays in accessing a trial can be stressful enough to make us second-guess our interest in joining a trial. Cancer patients live with a sense of urgency, rightly so. Here I am with worsening symptoms, anxiously waiting for the one and only Phase 1 trial in Alberta that I tentatively qualify for to open, 5 months after obvious tumour progression began.  A cancer patient’s time is valuable, and a lot can happen in a few weeks or a few months.

In conclusion, if more patients are properly informed of clinical trials, and if more trials are available and accessible, more patients can enrol and help pioneer new cancer treatments. With the growing prevalence of cancer, Calgary, with its population of over 1million, and the rest of southern Alberta need better access to clinical trials, and thus more potentially life-saving opportunities closer to home.  Despite all the challenges cancer patients face, those like me still choose to take a chance on clinical trials. We stray from established standards of treatment because we believe there is something better out there; effective treatments that have yet to be discovered, ones that give us new hope for a better outcome.  

As One Door Closes, Another Opens

Victoria's cherry blossoms in full bloom

I received the unfortunate news shortly after my last blog post. I don't have the T790M mutation so do not qualify for the AZD9291 Phase 3 trial :(. The news was upsetting since I had so much hope in this new drug. At the same time, I almost expected it. Call me crazy but I had a dream two nights in a row of a woman telling me I didn't have the mutation. I thought it was odd but I think it prepared me for the bad news. What made the bad news even more bearable was that we were vacationing in beautiful Victoria, BC, which was in full spring time mode, at the time. The fresh ocean air, lush greenery, and cherry blossoms would uplift anyone's spirits. I truly believe that everything happens for a reason. I wasn't meant to enter that trial. So ok to close that door.

A day after the "bad news", the head clinical trial researcher called me and asked if I would be interested in a Phase 1 trial available at the end of April. The nice thing about phase 1 trials is they have less strict qualification requirements. The bad thing is, you have no idea what you're getting yourself into, sort of. I researched the trial drugs and deemed it as having a decent potential for a good response. I opted to get the information from the trial nurse and will decide from there. A new biopsy may be needed if there isn't enough tissue left from the previous mutation testing.  Hopefully, there's plenty good tissue remaining for this trial to test! Waiting to hear back on that status...

Once home, we went to see my oncologist to discuss the options. Phase 1 clinical trial? Chemo? Afatinib? If I were to stay qualified for the trial, Afatinib was out. My pains were steadily worsening and tumours continue to slowly increase in size so I wondered if I could wait for the trial to open. Then the option of palliative radiation came up. We met Dr. H on March 31st and, after a good discussion, decided to proceed with palliative radiation. The goal: reduce or stop the pain from worsening. Possible other benefit: tumour shrinkage. Possible side effects: sore throat, skin burn, fatigue, radiation pneumonitis (most serious). But because this treatment is palliative not curative, the radiation dose is much less and I will only undergo 10 treatments (ie 2 weeks) vs 7 weeks (curative but much more risky). The discussion was so simple that I wondered if I was missing something. The radiation oncologist reassured me it was that simple. Forgot to mention that he looked like Doogie Howser, fresh out of school! But he seems trustworthy enough. So another cancer treatment adventure awaits! Wish me luck! ...again. 

I was asked by Dr. B to share my experiences at a research meeting where the goal was to bring in more Phase 1 trials into Calgary.  This was something that would benefit me and possibly so many other patients in southern Alberta, so naturally I agreed.  It wasn't a stressful task until I received this statement from my oncologist by email: "Don't underestimate the impact of your words". Yikes, no pressure. I presented my short talk today (April 8th), a little nervously, and the response was great! The audience was comprised of oncologists, researchers, ethicists, pharma reps, psychologists, and all their support staff. I met a few more oncologists who thanked me for sharing my experience and opinions, especially  because it was done so in a concise scientific manner (helps to have a health sciences background).  I just hope it was impactful enough to motivate them to actually bring more clinical trials to Calgary.  I will post a shortened version of my talk as you may find it informative also. 

In the meantime, I have to figure out how to make traveling to Edmonton work if I were to enrol in that Phase 1 trial. And prep (do nothing?) for my first palliative radiation treatment which begins tomorrow!