7.02.2019

How Now Mad Cow

I finally pulled the trigger on a trial, and I will admit it wasn't easy.

It was very easy for me to say yes (to that clinical trial dress), but what wasn't easy was finding a trial in a timely manner - or at least timely enough to keep my anxiety from creeping in to every corner of my life. To say it was a weird few months is an understatement, and my head space was clouded over in ways I've never experienced. I found myself withdrawing from the world - not because I was in a depressed state, but because I didn't have an ounce of anything to give as long as my mind was consumed with the reality that I had no treatment options on the table.

It has been nothing short of bizarre to have had a plan for 7+ years, and then all the sudden be left stranded on an island waiting for the phone to ring. All the while knowing cancer was continuing to grow, and the horrid cough I had reminding me daily that things were not improving.

I opted for a phase 1 trial primarily because that's what is available to me and my tumor type. As they say, beggars can't be choosers, and I was at the point of begging. I know most patients cringe at the idea of a phase 1 trial, as it's when the drugs are first tested in humans and the main purpose is to determine proper dosage (meaning how much of the trial drug can be given before side effects/toxicity because an issue).

The catch is the drugs they are studying have been shown to work in a lab, and by "lab" I mean in animals. Are you offering yourself up to be a human guinea pig? Absolutely. But are you also offering yourself up to be the first to get drugs that could work? Absolutely!!!

What I found most surprising once I jumped into the clinical trial pool was how hard it was to actually get into a phase 1 trial - primarily because of space available and the timing in which that space becomes available. Phase 1 trials have limited numbers of patients, and it's often doled out at a "one at a time" rate. Meaning in some cases I couldn't start a trial until the previous participant had completed their run.

Over 3 months after my last round of chemo the stars finally did align, and a trial I signed up for over 2 months prior locked in my spot. Ironically it was a trial I had considered last summer, and opted to pass on due to the option of revisiting a previous therapy. I'm playing the long game here, and I knew going in my goal would be to buy as much time as I could. By "buy time," I don't just mean life, I mean time for trials to progress, data to come in, trial arms to open, and new trials to begin.

In my case, the trial I was considering last summer changed it up a little from when I first considered it. They went from doing an intratumeral injection of the virus (injecting it right into the tumor) to doing an IV infusion of the virus (a drip from the bag) and found they were getting better results from the IV infusion. It's a clear example that "buying time" bought me a potentially better outcome.

The trial itself, one I've taken to calling Mad Cow Disease, is one and done. It is what's called oncolytic virus therapy, and if you click on that hyperlink you can better understand the use of viruses to fight cancer. I was infused with the virus, spent 24 hours in the hospital dealing with magnified flu-like symptoms, and spent the following week trying to get through the day without an all out crashing nap. We'll see if anyone I work with reads this, as I'll admit to putting my head on my desk for a power nap at work while listening to a webinar because I just couldn't go a minute more without face planting on the nearest flat surface. And they thought my door was shut just to filter out the ambient noise.

Roughly 6 weeks after my infusion I'll have a scan to see if it worked, and then I'm free to move about the clinical trial world again. I do have a few spoons in the pot, and something exciting that's brewing that I'm not prepared to talk about until it's actually underway. But the relief I have now is that I at least have options - something I spent 13+ weeks feeling like I didn't have, and that's a very frightening place to be.



3 comments:

Maha Fayek said...

You have writing skills as well maybe all would lead to a book who knows. Stay strong. It’s nice reading you.

Anonymous said...

Hi, it looks like I will be jumping in a clinical trial soon. I have colon cancer MSS, KRAS, that has come back three times. Now it is in my lymph nodes. I am a patient at MD Anderson and hope to get into their Y90 trial.

I discovered you on twitter just yesterday. Looking forward to reading everything you have written!

Unknown said...

WHAT A GREAT MIRACLE THAT I HAVE EVER SEE IN MY LIFE. My names are Clara David I’m a citizen of USA, My younger sister was sicking of
breast cancer and her name is Sandra David I and my family have taking her
to all kind of hospital in USA still yet no good result. I decided to go to
the internet and search for cancer cure so that was how I find a lady
called peter Lizzy she was testifies to the world about the goodness of a
herbal man who has the roots and herbs to cure all kind of disease and the
herbal man email was there. So I decided to contact the herbal man @herbalist_sakura for my
younger sister help to cure her breast cancer. I contacted him and told him
my problem he told me that I should not worry that my sister cancer will be
cure, he told me that there is a medicine that he is going to give me that
I will cook it and give it to my sister to drink for one week, so I ask how
can I receive the cure that I am in USA, he told me
That I will pay for the delivery service. The courier service can
transport it to me so he told me the amount I will pay, so my dad paid for
the delivery fee. two days later I receive the cure from the courier
service so I used it as the herbal man instructed me to, before the week
complete my sister cancer was healed and it was like a dream to me not
knowing that it was physical I and my family were very happy about the
miracle of Doctor so my dad wanted to pay him 5 million us dollars the
herbal man did not accept the offer from my dad, but I don't know why he
didn't accept the offer, he only say that I should tell the world about him
and his miracle he perform so am now here to tell the world about him if
you or your relative is having any kind of disease that you can't get from
the hospital please contact dr.sakuraspellalter@gmail.com or whats app him
+2348110114739 / via his website https://drsakuraspellalter.weebly.com/ you can follow him up on Instagram @herbalist_sakura for the cure, he will help you out with the
problem. And if you need more information about the doctor you can mail me
davidclara223@gmail.com