I'm Number Two!!

This week's visit to the oncologist helped clarify several questions I had re the upcoming clinical trial. First of all, I am not the second person in Canada to be taking this combination of drugs. Rather, I'm the second person in the world to do so. Who'd a thunk it? Me, a medical pioneer? For reasons relating to maintaining the privacy of the first person embarking on the trial, I can only be told that the woman is "around" my age and also has metastasized breast cancer - although I haven't a clue re which organs are involved in her case. Here are a few more things that I learned: I won't start the trial until Dec 7. That will allow the first participant to have a complete month's worth of the drugs - and the trial overseers to monitor/resolve any side effects/unforeseen issues that crop up during that time - prior to my first dose. The next person to join the trial will wait until I've receive a month's worth of the drugs before she starts. Together, the three of us will form the first group of trial participants. Each of us will receive a 50% dosage of each of the two drugs. The second group of trial participants will receive a slightly higher dosage, and the next group a higher dosage still. This method of gradually increasing the dosage for each group will help the researchers determine the optimum dosage of each drug that will produce the side effects. The trial period for each group of three participants will be six months in duration. During that time, I will have a CT scan every six weeks rather than every three months as I have in the past. This will ensure that any shortcomings of the treatment will be detected sooner rather than later. I will also receive heart scans (either MUGA or ECG) on a similarly regular basis, for the same reasons. In addition, for the first month of the study, I will be required to report to the BC Cancer Agency in Vancouver on a weekly basis for blood tests and other monitoring. During the second to sixth months, the tests will only be required on a bi-weekly basis.

During the course of the trial, I can expect to be plagued with diarrhea, nausea, and fatigue. One of the drugs is also likely to cause night-blindness (so no driving after dark for me). I do not need to adjust my diet unless diarrhea or nausea issues need to be addressed. I can continue will any and all activities that I feel capable of undertaking. However, I cannot travel outside of the Greater Vancouver area for "at least" the first month of the trial in case I need emergency attention - since the folks involved with the study are likely the only ones knowing what to do to assist me. After that, I only need to be mindful of the dates when I need to report to the Agency.

So what happens after the six month trial ends? Well, that's a good question and one that nobody is able to answer at this time. If all goes as planned and the drugs and I get along, it is hoped that funding will be available for me to continue on with the drug regime. At present, the drugs are not covered by any medical plan, and they are not covered by the Cancer Agency. However, my oncologist and the trial study team assures me that every effort will be made to secure funding for the drugs should they prove beneficial in my case. Incidentally, nobody would tell me just how much these drugs would cost should I have to pay for them myself - the oncologist said I likely can't count that high anyway! Yikes!

If the drugs used in the trial prove to be ineffective, or if funding is not forthcoming, the oncologist assures me there is another plan waiting on the back burner. However, the drug trial is thought to be a more effective alternative for me at this time, so we're going with that option first.

Some followers of this blog have asked what will determine the effectiveness of this trial. Well, it is not to cure cancer. In my case, that ship sailed long ago. Chemotherapy was prescribed when it was thought that a cure was possible, but once the cancer spread beyond the breast and axial nodes - and even further into some of those newly affected organs - a "cure" was no longer in the cards. Thus, everything that will be given to me from now will (hopefully) slow the spread of the disease and prolong the highest quality of life obtainable. I'm good with that. Always felt quality of life trumped length of life and doubt I'll change that view any time soon.

So, on Dec 7, I'll be keeping my fingers crossed that my body likes these new drugs, that they are easily tolerated with minimal side effects, that funding will be available to cover the cost of the drugs after the six-month trial ends, and I can continue enjoying my happy little life. And I am sure that will be the case. God willing.