Musings of a Lab Rat: Blog 1

 My beautiful family that keeps me going.

My beautiful family that keeps me going.

I haven’t been blogging of late – a combination of laziness and the craziness of life (I know, the contradictions!).

For those of you that follow the Dear Melanoma Facebook Page, you will know that I am in the process of starting a new clinical trial. I say process because I am currently jumping through a million hoops to secure my place. I have signed the consent form, but I still have to have a million and one tests/scans etc to tick all the boxes before I am officially eligible for trial.

As you can see, the clinical trial process is complicated.

I am not new to the world of clinical trials. In February 2014 I started a clinical trial for Keytruda (now on the PBS) and was on the trial for almost two years.

I didn’t really blog much about my feelings and experience of being on a trial, but I have decided that I am going to start a little blog series called, ‘The Musings of a Lab Rat’.

After reading so many lovely comments on Facebook the last few weeks, as well as many conversations with friends and family. I have decided the best way to start this series is with how I manage to get past the ‘it is so unfair’ mentality.

Let me tell you, it has taken time, patience, and a very good oncologist, to get me to the point where I am not angry or walking around thinking life and the process of treating cancer is unfair. I have my moments, but I have made the conscious effort to not let those feelings be at the forefront.

As I have chosen to make my life public, I do get a lot of very emotional comments from people that follow my blog when something doesn’t go my way – they feel cry when I cry and celebrate when I celebrate.

We (I am including you all) have all struggled along the way with many bumps in this road. For example, when I was removed from the Keytruda trial because of growth in one lesion, when every other lesion was still responding. When I had to retry the treatment that initially didn’t work.  Learning that only 30 melanoma patients in the whole world would be able to access this current trial. And, last week when I needed to have more biopsies to meet the requirements for clinical trial.

I completely understand that people find it unfair that not every patient can access certain treatments or trials when they need them. It breaks my heart when I hear of someone passing away because they couldn’t access a treatment or trial. I am especially angry, and will never come to peace, when the reason this person could not access treatment was purely because the government did not get their act together and make the treatment available on the PBS…. but that is a totally different story and not what I am talking about today.

There are many times that I have sat in my oncologist’s rooms asking why we have to follow a certain treatment path – why can’t I jump to that treatment that I know is better? Why can’t we go back to a treatment later and try again?

The biggest gift, except for my life, that my oncologist has given me is her ability to explain the treatment process. She explains the rules of the PBS and why we need to take treatments in a certain order (for me, BRAF targeted treatment, Keytruda, Yervoy). If we didn’t follow this order, we wouldn’t be able to go back to one of the earlier treatments unless we paid for it and it is not cheap. For example, if I skipped the targeted treatment and stayed on Keytruda following the trial, I would never be able to have the targeted treatment again.

When you have terminal cancer, you do not want to miss opportunities, you want to prolong your treatment plan.

On top of these treatments that I accessed on the PBS, I was lucky to access treatments on compassionate grounds, as well as on trial. Thanks to my oncologists persistence, treatment knowledge and her foresight, I have been able to REALLY prolong my treatment as compassionate access and trials do not impact PBS access.

My treatment to date has been:

Compassionate Access: BRAF targeted (Debrafenib and Trametinib)

Clinical Trial: Keytruda

PBS: Debrafenib and Trametinib

PBS: Keytruda

Radiation of problem lesions

PBS: Yervoy

Compassionate Access: Opdivo

Opdivo and Yervoy were given as a combination treatment.

 I have been so lucky with timing!

This is my first piece of advice for patients that are struggling to understand the process of treatment and have become angry and lost.

Make sure your oncologist explains their methodology and reasoning. You need to have total trust in your oncologist.

It would be fantastic if everyone could access treatment, but trust in the system and your doctors, they are doing everything they can for you and if you feel they aren’t, it is time to get a second opinion. There is reasoning for the craziness that is treatment.

It can be nothing short of shit having cancer, but replacing your anger with a sense of understanding really helps. Understanding your treatment gives you an element of control in a situation where you often feel lost and hopeless.

With regards to clinical trials, IT IS THE MOST CONFUSING PROCESS EVER!

First of all, trials are limited by size of the trial and treatment sites. They can’t take everyone and they aren’t available at all hospitals. It is extremely unfortunate that most trials take place in large cities, making it difficult for regional patients… once again, that is another blog!

The criteria to be eligible for trials seems endless. Some trials require patients that have had no prior treatment/similar treatment (e.g. no previous immunotherapy treatment for a new immunotherapy treatment), other trials are for patients that have exhausted all treatment options (this is the case for the trial I am commencing), patients with brain metastasis may be excluded, certain previous medical conditions exclude you (this is the case for quite a few trials that I could have accessed), and the list goes on and on and on and on.

On top of that, you have to ‘pass’ the myriad of tests and scans prior to starting treatment, this is what I am going through now. If they don’t get enough from my biopsies, no trial for me.

Yes, I can understand this sounds like the most painfully unfair situation. Once again, something that I have had to come to terms with – definitely when it comes to the childhood illness I had that excludes me from any trial one specific pharmaceutical company offers (boo!).

There are all these rules because they are TRIALS, these treatments are being tested to make sure they are viable and are used in the correct way etc. This means that there needs to be ‘controls’ – go back to high school science and any experiments you did. You need to control the environment and parameters in order to get a clear result.

Personally, I would never try any treatment that has not completed extensive clinical trials (there are a lot out there), unless I was in a clinical trial and being watched like a hawk.

Cancer is truly the biggest ‘mind fuck’. I hope this blog helps you understand why I manage to remain so calm on my blog about the process. I am someone that needs to know the details, understand my treatment plan, and understand why I am simply not eligible for certain treatments. I need control.

There are so many things that I am already upset about and find unfair.

It is unfair that I am 25 and have terminal cancer.

It is unfair that Serge and I can’t have children.

It is unfair that cancer has impacted my family and friends so personally.

I can’t be angry about treatment. I can’t stay in the mentality of ‘that is so unfair’.

I would rather spend time living.

I don’t want to be angry at the world.

My next post in ‘The Musings of a Lab Rat’ will be about my love of being a Lab Rat.

Do you have any questions about clinical trials? Is there something that you would like me to write about?