Conundrum for the broken

 I was excited to be able to make it to take a newly approved drug, Cyramza. I did not expect it to cause me so much suffering. In fact, I feel a bit broken from this new treatment (Cyramza and Docetaxol).

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm426720.htm

I'm somewhat stable with broken bones, and dealing with the side effects of the chemo treatment with discolored and cracking nails; my feet, face, eyelids, and belly are all swollen, causing me to gain 10 pounds. Along with that, I have mouth sores, alopecia, and extreme fatigue. The side effects are destroying my quality of life. Individually they are manageable, but together I have to ask - is Docetaxol worth this? I don't know what the future holds, but I hope there will be a more manageable and effective treatments soon.

My Grandma

Knowing that death is inevitable does not make facing death easier. Death felt so real when my grandma passed away this week. She was a good-natured, open minded, healthy, and active woman who loved to tease her grandkids. A few months back, she acknowledged her longevity; bravely declaring that at 97 years old, she was at peace with letting go when the time comes. That time came a few days ago. And while she was ready to go, it is still hard to accept the void in my life even knowing that she had an impressive and fulfilling life.  Despite the emptiness, her passing inspires me to reach that peaceful state when my time comes.
 

What's next?

My most recent scan showed that the tumors were growing after 2 months of Crizobtinib. Every time a chemo treatment stops having an effect on cancer, I panic and think about the people I love that I have to leave or the things I want to do before I go. My doctor suggested that even though the drug did not shrink the tumors, it might possibly slow the growth rate. He recommended that I stay on Crizobtinib until another possible option is available. I'm unclear as to how long this process will be. There's no waiting in cancer. Everything gets worse with waiting. So I have an appointment with my previous doctor to explore possible clinical trials at his hospital. Hopefully, there will be a useful trial for me soon. The wait is tough. The longer I wait for the next treatment, the more pain I feel in my body.

---------------------------------------------------------------------------------------------------------------
Update - I was unable to get into any clinical trials, because of my seizures. A bit of a downer, but thankfully there was one chemotherapy that my previous doctor thought of. I started on Cyramza and Docetaxel. Hopefully it will be a good combination. 

Survival Rate

My friend told me that her father-in-law had lung cancer. She wanted to know what his chances of survival are. I felt that knowing the rate is depressing and might not even apply to him. Everyone is different and special in their own way. No one wants to be just a number. When I was first diagnosed during Thanksgiving of 2011, I googled my chances of surviving - 8 months was pretty slim and 5 years was even slimmer. I don't know if I'm going to be that 1%, but it doesn't matter. I can't spend my life crying about my death. What matters is the present, because that's the only place I can be in. So I have to enjoy ever moment of it and make it count. I hope he does too.

 

Genome Test

I became allergic to the Carboplatin treatment recently. My throat closed up causing me to wheeze heavily. Thankfully, the nurses ran to retrieve an oxygen tank for me.  Time to search for another treatment, since I can no longer tolerate this one. Plus, a scan showed that I also now have a new met spot on my rib.

A week or two earlier, I had taken a genome test, which tests for 340 types of mutations that are also present in other types of cancer, not just lung cancer. I had another mutation, NTRK 3, which does not have a targeted drug in the market yet. The next best solution is Crizobtinib that targets another mutation, ALK, but has been known to be somewhat effective with the NTRK mutation.

This little pill packs a punch. It has been so hard to keep food and water in with the nausea and GI track problems. I was eventually prescribed a nausea drug (Zyprexa), which for the most part, is keeping things under control. It was a tough beginning. At least my hair is slowly growing back.