Thursday, 29 October 2015

An Unwelcome Update

waiting for my turn
i will never get used to that thing, absolutely hate it

Sometimes things don't always play out as planned or as we had hoped. I was given 9 infusions every other week of the new, very expensive drug Nivolumab. I had two CT scans 3 weeks apart. The results, unfortunately, didn't make me jump with delight. The cancer progressed despite our efforts. We could have given up after the first scan, but the Oncology team wanted to know for sure that what they see is not just an inflammation from the drug, they were hoping it just gets worse before it gets better. The second scan confirmed our worst nightmare though, that it is indeed a progression and with mets on the left lung, which moves me back to stage 4. The new predicted time I have - 6 months without treatment. With the rare mutation I have, there isn't a lot of conventional options left, the team is frantically searching for clinical trials. I'm still actively pursuing alternatives. My Oncologist gave me the option to go back to chemo, but a different cocktail this time, a combination of Docetaxel (Taxotere), taken intravenously and Vargatef (Nintedanib), taken orally. These are both very toxic and would only give me a few months more, if it even works. I know it's there as an option, but I have turned it down. So the drug didn't please, but not that.
It is very upsetting, the news is a big blow to me and my efforts. I have reached milestones in this journey but I'm still running short. I came back from the meeting despondent and crestfallen. My 13 yr. old daughter sat beside me and asked if I could watch a video with her. This alone renewed my conviction to keep going, because after all, hey, I'm still breathing, and I want to live so my daughter can watch as many videos with her Mom as she wants. I've got new things in my arsenal that could be the breakaway I'm looking for, I hope I find my path real soon. Here's wishing the next update will be better. 

Hope is being able to see that there is light despite all of the darkness. Desmond Tutu 

We must accept finite disappointment, but never lose infinite hope. Martin Luther King, Jr. 

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. 
Thich Nhat Hanh 

If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell. ~Lance Armstrong

 everything is as it should be and this obstacle simply is part of my path


  1. I admire your strength inspite of what you're going through, don't give up, God has given you years to be with your family, and can give you more if it's his will, for now live life to the fullest. We your family here in Canada are continously praying for you. <3

  2. Hi Caroline, I have been reading your blog, and really appreciate your detailed and candid entries. You have a lot of helpful and heartwarming information and I'm looking forward to reading the rest of your entries. My wife, who is 38, was diagnosed with Stage IV Adenocarcinoma (EGFR+) but unfortunately with an Exon 20 Insertion back in September of this year. I was wondering - would you mind sharing what type of mutation you have (per your entry above)? If you don't want to share publicly, I of course understand, but I'm just trying to figure out how best I can help my wife as we go through this journey together (also here in London!). She did not respond to either erlotinib or first line pemetrexed/cisplatin (I was happy to see that you made it through to the Pemetrexed maintenance phase!). We just started docetaxel/nintedanib yesterday and hoping for a response to these. I'm sorry you've had to go through this, but your blog has brought some comfort to read that we're not alone around here. I sincerely wish you the best!
    Warm regards, Owen

    1. Hi Owen, I'm so sorry I missed this comment, I have been busy but that's no excuse for not checking. I have an exon 20 mutation too like your wife. How is she doing? May I ask where you are, we didn't even try docetaxel as there is no known drug specifically for exon 20. You can email me Owen
      I apologise again that I've missed this. Best,

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