April 1, 2015

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!