To Try, or Not To Try?
That is my dilemma. I have been invited to participate in a Phase 1 Clinical Trial for a new novel class drug called CPI-613. I don’t know if I should do it or not.
As most of you know, I have been battling this stubborn and aggressive cancer called Synovial Sarcoma. I’ve had multiple surgeries in the leg and lung, radiation, and chemotherapy. The last chemo shrunk the tumours in my lung, but it’s still there. The medical community has labelled me as what I call “PIT”, which stands for Palliative, Incurable, and Terminal. Basically, there is no known cure, and there is no more conventional therapy they can give me. It also means that they (the medical community) expects me to die from this disease.
The only option left for me are clinical trials, if I chose to participate. This is where I am not sure about, particularly this new novel drug CPI-613. CPI-613 works differently than other chemo, as this drug is a targeted therapy that apparently destroys only the enzymes used by cancer cells to multiply and grow. Normal healthy cells does not use the same enzymes as cancer cells. It has been tested on animals with promising results. It has never been tested on humans, and only a handful of participants are undergoing Phase 1 trial at the moment.
Phase 1 trials, in layman terms, means that it will be the first time this drug will be tested on humans, and that the primary objective is to determine what is the tolerable amount humans can take without severe side effects, or simply put, without killing them. The effectiveness of this drug is only a secondary objective in Phase 1 trial. They will start with small dose and gradually increase the dosage until a sever side effect is experienced.
Now I’m a point-form kind of guy and I like to weigh in pros and cons before making a decision:
Pros:
- Has shown promising results in animals, to shrink and kill cancer tumours;
- CPI-613 is a novel class targeted drug that it is not expected to have the same toxic side effects as conventional chemo;
- I’ll be more closely followed and would have more advanced and thorough testing than currently being done to me (frequent PET scan, MUGA scan, ECG, EKG, brain scan, complex bloodwork, etc) ;
- I’ll be helping the BC Cancer Agency and the medical community in determining and discovering new drugs that may someday help others;
- If effective on me, I can qualify for further testing and trials of this same drug;
Now the Cons:
- Animal testing was only on breast, colon, and pancreatic cancer cells. They have not tested it’s effectiveness on Sarcoma in animals;
- Has never been tested on humans;
- Toxicity to humans and side effects have not been determined, and could possibly be severe, debilitating, permanent, and deadly;
- The effectiveness of this drug in humans have not been determined;
- I’ll be at the BC Cancer Agency facility in Vancouver almost daily (an hour drive from home) during the trial and will be poked and scanned alot;
- I’ll have less precious, productive time to spend with the family;
- I will not be able to return to work;
- If ineffective on me, I will waste few precious months that could have been spent living my life fully;
According to the trial specialist, my last scan showed that the tumours are “relatively unchanged”. I am now stronger and able to do most of the things I used to do. I am feeling normal again, except of occasional anxiety attacks. I honestly do not want to go through the same shit I’ve gone through during the last chemo, but I’m willing to sacrifice again if the benefit outweighs the risk.
Unfortunately I doubt the benefits outweigh the risks. With Phase 1 Clinical Trials, they do not expect to have great results and most of the time, drugs don’t go past Phase 2. The probability of this drug working on me is the same probability of this cancer disappearing if I do nothing.
Do I want to be a guinea pig?
I don’t expect everyone to know what I have gone through physically, emotionally, and mentally...but let me just say that I wish it would never happen to anyone else.
There are still other clinical trials that may soon become available to me, so turning this down doesn’t mean I’ve run out of options or given up.
Please do give your honest opinion whether I should proceed with this Phase 1 trial or not. I’m confused!