Last week I had my follow up appointment. This time I bombarded my doc with many many questions.
Here's what I learned:
Apparently this tumor test isn't an exact measurement of the response and there is some variability of what will actually work and won't. However, as I said before, both my doc and I were expecting there to be very few, if any drugs that would "cure" my cancer. In any case, Two months later and the results of my tumor sensitivity were in. From what I had heard previously, there were no drugs that had worked, and the next step my doc had considered was Avastin. I learned later that the case was a little different: The lab divided the individual drug responses into 3 categories- good response, some response, and no response to treatment. As expected, there were no drugs with a good response and about 7 others with no response. To my surprise though, there were two that actually fell under the "some response" category- the Taxol/Carboplatin combo which I was previously on, and another combo of a drug named Gemcitabine in combo with Carboplatin.
The side effect profile of Gemcitabine was nearly the same (fatigue, nausea, low-blood counts), and we discussed possibly going this route. Hair loss was probably my biggest concern at the time, and I was sure to bring this up first. My doc sent the nurse in for awhile so she could explain more about the side effects. The nurse said that of all her patients on this drug, very few lost their hair and most just had some thinning. This eased my concerns a little, but I still sat on that exam table conflicted about what to do with this info. The treatment timing was a little different- it would only be three cycles, or about 2 1/2 months. I would get a combo infusion of gemcitabine and carboplatin on week 1, and then return the next week for a solo infusion of just the gemcitabine. Week 3 I would be receive no treatment. It didn't seem all that bad, and because I had tolerated chemo so well the first time I was expected to do just as well. Of course the big difference was that this was the 2nd time around and chemo had lost it's novelty when I knew what to expect. I still couldn't make up mind, especially when I had other questions:
What about the Avastin, the drug that she had previously recommended?
A little aside about Avastin: It is a controversial drug that is currently FDA approved for several other cancers, including breast cancer. Interestingly enough, a few weeks before my appointment the FDA revoked their decision, claiming that the benefits were too small to outweigh the extreme cost of the drug and potential side effects. Avastin (Bevacizumab) works by inhibiting new blood vessel growth to tumors- preventing them from getting the nutrients they need to grow (large tumors grow a significant amount of blood vessels to feed them- something which often makes them difficult and dangerous to remove). Supposedly it's very well tolerated and often given in conjunction with chemo. However, one of it's most crucial side effects, although rare, is that it can create a hole in the gut- causing significant enough bleeding to cause death. It is also very very expensive- up to $100,000 a year- leading many if not most insurance companies hesitant to cover the costs. It is currently not approved for use for ovarian cancer, but is used off-label with mixed results. The FDA decision is interesting enough to check out- Although Avastin has been successful in reducing symptoms and curing some breast cancer patients, many people believe that the FDA reversed their decision based more on the costs than side effects- an unfortunate sign that the government can control how patients choose to spend their money on treatments. This NY Times article I found explains the situation.
In any case, my doc considered this drug before my appointment, but knew that my shitty insurance wouldn't cover it (she definitely confirmed that my insurance was indeed the shittiest). The drug company did, however, offer patient assistance for patients who demonstrated a strong argument for it's use. Unfortunately, right now with the tumor removed, I am not considered to have active cancer. Therefore she couldn't successfully advocate for financial assistance. So that option was out, because there is no way I could afford that drug when I can't even make a single payment on my school loan.
What about all the new treatments currently being investigated in clinical trials?
Not really an option. Again the problem comes up with my current circumstances. There are over 30 Stage II clinical trials on various treatments for ovarian cancer. There are quite a few specifically for patients with recurrences. Yet, again I do not qualify for them because I do not have active cancer. I essentially have to wait until I get worse to get better. How twisted is that?
So how do I decide?
So after being on the fence I finally said yes. The nurse set up an appointment and I was to start the next week. I left the appointment ready to plan the next few months to accommodate sitting in that infusion room and spending the next 2 days of feeling like crap. And thinking about the possibility of being bald, yet again.
I went home and spent the week talking to my friends and family about my decision. And almost everyone I talked to about the situation didn't think it would be worth it. Weird, because so many people I have met in the past had such faith in science that they would have said chemo. But science had failed me the first time.
After much more consideration I called the clinic today and cancelled my appointment. I don't think there was a single factor that influenced this decision- there was just too much mounting evidence against it for so little expected benefits. I just finished nursing school- did I need to make my chemo brain worse all for a treatment that may or may not work? Do I need to put my life on hold any more than it already is? Why should I make myself feel sick when I currently feel completely? I just have hope that there are other ways to fight this thing.
I feel really good about my decision. Relieved is more like it. I'm planning on continuing to improve my nutrition and have been reading up on the influence of diet on cancer. And I'm going to start drinking Essaic tea. I figure that I might as well continue to feel good for now, and if the cancer returns then I can always try chemo then.