Good news and bad news...

Tuesday, September 22, 2015
A quick update...

Last week I shared the news that my latest CT scan wasn’t great. A lesion on my adrenal gland had grown and there appeared to be activity in my lymph nodes.

It is really difficult to explain the emotions that were triggered by this scan. On one hand, I felt silly that I was so upset by these results because the big picture was not that bad – everything else was stable, which is great! But, this one naughty little lesion had the potential to change the direction of my treatment, a treatment that essentially bought me back from death’s door.

It feels like a lifetime ago that I was given three months to live and being told that my only hope of more time would be gaining access to a clinical trial of the drug Keytruda and hope that it would work.

Keytruda did work. It has given me over 18 months. It has given me time to enjoy life. It has been kind to me when it comes to side effects. Keytruda has truly been my wonder drug.

The last week my fear has not been about death. This pesky little lesion is not going to change my prognosis on its own; it will need to recruit my other lesions to do that. Instead I am scared that Keytruda is going to be taken away from me.

It has been a long week leading up to a PET scan that I had yesterday. This morning my parents, Serge and I went to the hospital to get the results.

I do not know whether to be relieved or stressed about the results. I have been wanting a PET scan for a while now because everything has been stable for over 12 months now and I wanted to know what was actually happening – I needed to know if the reason they are stable is because they are not metabolically active. 

I am excited to tell you that the majority of my lesions are not metabolically active – woohoo! We don’t really know what this means long term, but we will celebrate this.

HOWEVER, the lesion on my adrenal gland, the lymph nodes near my pancreas, and some subcutaneous masses are still active – quite an odd collection of lesions! This could indicate that these spots are ‘immune’ to the treatment.

I proposed to my oncologist that we just cut everything out, but apparently it’s not that simple!

We will wait 5 weeks to have another scan and see if there is any more growth in the adrenal gland, and if not we can continue on Keytruda. However, if it has grown I will stop Keytruda and start on the BRAF combination treatment Debrafenib and Trametinib. I will also meet with the surgeon and radiation doctors to discuss options. I am very lucky to be surrounded by an amazing team!

So lots of mixed emotions in the Betts/Simic household. I so want to celebrate, but I am also so apprehensive.

Is this lesion growing an indication that I am starting to not respond to Keytruda?

Is this just the beginning of a downward slope?

What will happen if I am taken off Keytruda and Debrafenib and Trametinib does not work?

Will I still have the same quality of life on Debrafenib and Trametinib as I did on Keytruda?

So we sit and wait another 5 weeks and keep our fingers and toes crossed for the best. And if we don’t get the news we want to hear, I need to find strength to keep on going and not let it get the better of me. I need to remember that I am in a much better position than I was back in January 2014.

1 comment :

  1. Oh. My. God. Of course you would be feeling a huge range of mixed emotions with all of these "what ifs" being thrown at you. There are no words I can offer to ease your angst right now. I can only offer some potentially fun things in between the horrible stress you're under. Sushi? Wine? Both? And it goes without saying, a shoulder/ear anytime you want to vent. I wish I could give you more :( xxxx


Thank you so much for your comment. I really appreciate you taking the time to connect. Emma x

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