Holy crap, my appetite sucks lately.
Barely ate at lunch.
Drank half an iced coffee.
Ate one bratwurst at dinner (barely).
Trying to eat ice cream to balance it out (ha).
I wonder if they'll let me order off the kid's menu.
Saturday, May 31, 2014
Friday, May 30, 2014
Welcome to my world.
Here I am.
I kept a journal at Caring Bridge from close to the time of my initial diagnosis, but their format has become cumbersome and tiring to keep up with, so I'm switching to Blogger. For those that are first-timers to my world of cancer, I was diagnosed with ALK+ Adenocarcinoma of the lung (NSCLC - or non small cell lung cancer). The ALK diagnosis was fortunate, in a way... I was able to receive treatment via oral chemotherapy that was targeted toward that particular genetic mutation.
The first treatment, Crizotinib or Xalkori - left me randomly nauseated and with visual issues. My health did improve drastically in the first month or so, in spite of random vomiting... Yeah, that wasn't fun. Unfortunately Xalkori failed me after only 3 months of treatment. I found this out because I'd been having chest pains and shortness of breath - it turned out that I had over a liter of fluid around my heart. I spent 14 days in the hospital.
I was presented with the most recent option, a study for a 3rd generation ALK clinical trial being put on by Hoffmann-LaRoche. This drug was miraculous. I started to ride my bike again. I had minimal side effects. I felt great. Then, the headaches came about a week or so ago. I chalked them up to allergies, but thought I'd mention it at my upcoming oncologist's appointment. I had an MRI of my brain one day prior to that appointment. The MRI was just standard protocol for the study - recently added, however.
Two days ago I was informed by my oncologist that I have four tumors in my brain. My primary cancer is lung, but that's mostly stable at this point. There was new growth in my liver, and the bone metastases seemed stable.
When your brain is involved, the dynamic of your treatment changes quickly and dramatically. Instantly, my participation in the clinical trial I'd been doing, was stopped. The Clinical Trials Nurse spoke with the study manager and was told that since the radiation treatment I will inevitably have is not palliative and instead is an effort to eradicate the cancer in my brain, I cannot receive this treatment in conjunction with the study.
Palliative care can be given in conjunction to cancer treatment. I think there's a stigma associated with the word 'palliative' because when I asked most people what they thought of when they heard the word - they said it made them think of hospice. So, palliative radiation would be given to alleviate pain in a given area - though the goal of that radiation may not be to cure the cancer altogether.
I'm meeting with a surgeon on Monday to discuss a liver biopsy. They want to know if the tumor mutated beyond the initial ALK mutation. They'll try to get a good enough sample to send to Foundation Medicine and try to understand why the clinical trial didn't work out so well for me. I'll also be getting a B-12 injection.. Later on in the week I will have a needle biopsy of my liver, and will also likely have a port installed for future chemotherapy.
I will meet with a neurosurgeon on Friday to discuss radiation therapy and devise a treatment plan. I'm just anxious to move on. Even if this treatment makes me weak/sick or bald - I don't mind it... I just want this cancer to be gone from my body.
I kept a journal at Caring Bridge from close to the time of my initial diagnosis, but their format has become cumbersome and tiring to keep up with, so I'm switching to Blogger. For those that are first-timers to my world of cancer, I was diagnosed with ALK+ Adenocarcinoma of the lung (NSCLC - or non small cell lung cancer). The ALK diagnosis was fortunate, in a way... I was able to receive treatment via oral chemotherapy that was targeted toward that particular genetic mutation.
The first treatment, Crizotinib or Xalkori - left me randomly nauseated and with visual issues. My health did improve drastically in the first month or so, in spite of random vomiting... Yeah, that wasn't fun. Unfortunately Xalkori failed me after only 3 months of treatment. I found this out because I'd been having chest pains and shortness of breath - it turned out that I had over a liter of fluid around my heart. I spent 14 days in the hospital.
I was presented with the most recent option, a study for a 3rd generation ALK clinical trial being put on by Hoffmann-LaRoche. This drug was miraculous. I started to ride my bike again. I had minimal side effects. I felt great. Then, the headaches came about a week or so ago. I chalked them up to allergies, but thought I'd mention it at my upcoming oncologist's appointment. I had an MRI of my brain one day prior to that appointment. The MRI was just standard protocol for the study - recently added, however.
Two days ago I was informed by my oncologist that I have four tumors in my brain. My primary cancer is lung, but that's mostly stable at this point. There was new growth in my liver, and the bone metastases seemed stable.
When your brain is involved, the dynamic of your treatment changes quickly and dramatically. Instantly, my participation in the clinical trial I'd been doing, was stopped. The Clinical Trials Nurse spoke with the study manager and was told that since the radiation treatment I will inevitably have is not palliative and instead is an effort to eradicate the cancer in my brain, I cannot receive this treatment in conjunction with the study.
Palliative care can be given in conjunction to cancer treatment. I think there's a stigma associated with the word 'palliative' because when I asked most people what they thought of when they heard the word - they said it made them think of hospice. So, palliative radiation would be given to alleviate pain in a given area - though the goal of that radiation may not be to cure the cancer altogether.
I'm meeting with a surgeon on Monday to discuss a liver biopsy. They want to know if the tumor mutated beyond the initial ALK mutation. They'll try to get a good enough sample to send to Foundation Medicine and try to understand why the clinical trial didn't work out so well for me. I'll also be getting a B-12 injection.. Later on in the week I will have a needle biopsy of my liver, and will also likely have a port installed for future chemotherapy.
I will meet with a neurosurgeon on Friday to discuss radiation therapy and devise a treatment plan. I'm just anxious to move on. Even if this treatment makes me weak/sick or bald - I don't mind it... I just want this cancer to be gone from my body.
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