Human guinea pig

After serious deliberation of the pros and cons, I've decided to participate in the clinical trial for Sorafenib for two reasons:

1. I couldn't tolerate the idea I was going to have few follow up tests and only see my oncologist for follow up every three (and then every six months) to ensure the cancer doesn't come back. I didn't notice the symptoms of cancer the first time around until it was a stage IIIC. It worries me that I'd be left to my own poor detecting devices again.

By participating in the clinical trial, I'll see the clinical trial doctor, Dr. W, monthly and he'll examine me, take my blood pressure, test my CA-125 levels (monthly) and review the CT scans, which I'll have done every eight weeks. Before starting the drug trial, I'll also have an ECG to ensure my heart wasn't damaged by the chemotherapy.

2. The drug may work.

It's designed to stop blood flow to new growth. So new tumours wouldn't get the blood supply they need to develop. (I'm assuming I'm not having any other new things grow in my body at this stage of my life, so stopping that blood flow is irrelevant). It's been used successfully on kidney and liver cancers, and Bayer is testing to see if it will work on the reoccurrence of ovarian cancer. I've also read about clinical trials to see if it'll stop breast cancer development. That would just be a bonus.

Mind you, it's a double blind study, which means neither the doctor nor patient know if they've got the drug or the placebo. I guess we'll find out if I start getting some side effects.

Yes, I blogged about all the horrible side effects written on the informed consent package a while ago. But after talking to Dr. W and hearing the most common - as opposed to every possible reaction they've discovered could happen on the drug - and his reassurance he'll watch me like a hawk, I feel better. The most common side effects are tiredness, nausea, a redness, a rash, pain or inflammation on the hands and feet (that may result in peeling), higher blood pressure (they'll take my BP every week for the first while) and manageable diarrhea.

Angie and I laughed about that one yesterday. What is manageable diarrhea? How does that differ from the unmanageable? She said there's even questions in the medical world about the definition of diarrhea - frequency, consistency, explosiveness?

As I type these side effects, I'm thinking to myself, I don't want any one of these. But if anything becomes unmanageable or too painful, Dr. W can adjust the dose, give me a medication or cream to make it more tolerable or I can decide to withdraw from the study at any time. Who knows, it may be perfectly manageable.

But then again, if it's too easy to tolerate, I'll think I'm on the placebo. But, the placebo wouldn't come without side effects because the mind is a powerful thing and can conjure up imaginary symptoms when none really exist.

I'm also going on the clinical trial because it may help me now or in the future. And it may benefit other ovarian cancer patients. All cancer drugs started out with clinical trials. This may be the wonder drug women need to fight the return of this dastardly disease.

Angie and I did ask about the clinical trials for PARP inhibitor, designed to replace the damaged BRCA gene so it kills off mutant cells that develop into cancer. But apparently that clinical trial is currently for women in second or third remission.

I'm thinking positively right now and believing this cancer WILL NOT come back (so I won't qualify for the PARP inhibitor clinical trials), but maybe in the future they'll learn these PARP inhibitors work wonders for BRCA patients and make it available to all of us. Or maybe, one day they'll conduct a clinical trial for those in first remission.

Aaahhh, the wonders of science.

So my next steps are to spend a lot of time at the hospital on Oct. 20, getting my blood drawn, my ECG and the CT scan of my chest, abdomen and pelvis. Then I see Dr. W on Oct. 27 to review the tests to make sure I'm okay to start the drug. Then get my monthly supply.

Yes, I know I'll continue to visit the cancer centre a lot, but in a way, that makes me feel good. It makes me feel as though someone is watching out for me, catching all the signs and symptoms that I may miss.

Okay, so I'm a bit of a human guinea pig, but great discoveries have resulted from exactly these types of situations.

So I move forward into the next - and very different stage - of my cancer journey.

Tina