Unfortunately, the title of this post is not referring to the fact that I'm finally writing after a 3-month absence.
On August 11th, I found out the results of my latest PET scan, and they showed that the cancer is back in my liver, lymph nodes (did you know there are lymph nodes near the liver? Just another fun fact you learn when you have cancer), and a tiny spot on my spine.
Needless to say, this has been a devastating blow to me and my family. Even Dr. Sara was surprised by the results and said he is as upset about them as he would be if it were his own daughter. But unfortunately, this is cancer we're talking about and as I've said before cancer is ruthless, unpredictable, and doesn't play by the rules.
Somewhere in the back of my mind I've always expected that I would likely have to deal with a recurrence at some point in the future, but I didn't think it would be so soon. I was JUST getting to that thing they call "survivorship". I finished radiation on June 24th and, except for my ongoing Herceptin treatments every three weeks, I was finally moving on after a year and a half of principal treatment. And then cancer goes and knocks me back down again (but fear not; I don't plan on staying down for long!).
After Dr. Sara delivered the bad news, and showed me the new areas on my scans (because, by the way, they are all new areas; this is not a matter of the previous liver and spine spots flaring up again), he told me what the new plan was.
He prescribed an oral drug called Tykerb, which many studies have shown has a compound effect when given in conjunction with Herceptin. I now take 6 pills a day - 5 Tykerb and 1 Tamoxifen - and of course my three-week intervals of Herceptin continue.
I will be scanned again in November, and that is when we'll know if the new regimen is working. I asked Dr. Sara if it is possible that my November scans will be clear. He hemmed and hawed a little then said yes, it is possible; but he would be happy if my scans were either the same or (of course) showed less cancer than my August scans. But I'm an overacheiver so I'm going for clear!
I've been on the Tykerb for almost 2 months now, and so far I have experienced no side effects (from the drug or the cancer). Dr. Sara said the drug is pretty well tolerated over all, so that is good. I've also had no side effects from the Tamoxifen, which I've been on a little longer. The most common side effect of Tamoxifen is hot flashes, but I luckily haven't had any. (Of course, I was originally taking Tamoxifen as a preventative measure, but now I'm taking it as a proactive treatment. Dr. Sara said that it takes a few months to be able to tell if it's working, so here's hoping that it's doing its part.)
In fact, I feel healthier than I have in a long time. I've been eating healthier and even started working out again. I've had a lot of false starts over the last year and a half with the working out thing, but this time it seems to have stuck (so far). I finally mustered the motivation to go back to my kickboxing classes, which is something I loved to do before cancer, and now I go 2-3 times a week, in addition to running at least once a week. In fact, I even signed up for a 5K race in a couple weeks!
All in all, I've been living my life as normally as I can.
Dr. Sara says that the fact that my body tolerates my disease and treatment so well is a big advantage in my favor. He said that he has had patients who have about the same amount of cancer as me, but they have lost 25 pounds (without trying) and are very weak. With me, you would never know, because my body tolerates it so well.
So what if the Tykerb/Tamoxifen/Herceptin combo doesn't work? Well, Dr. Sara said that there are still A LOT of things in the arsenal to try. Luckily, with breast cancer, unlike a lot of other kinds including lung cancer, there are LOTS of drugs to try, and there is so much research being done that there are always new things coming out. So if my scans in November aren't what we're hoping for, it just means that we'll try something else.
Now, there's another side to this whole thing which was completely unexpected and unwelcome. It turns out that Tykerb is what is known as a "specialty drug" - I'm still not sure what this exactly means but I think it has to do with the fact that it's a relatively new drug and only available from one drug company.
More importantly, it means that it's a very expensive drug. Now, I'm lucky enough to have health insurance but even with insurance, my co-pay is $1800/month. That's not a deductible or anything - that is what I have to pay EVERY MONTH. It's more than my mortgage. And it's not like Dr. Sara can prescribe something else that's similar but cheaper - Tykerb is the one and only drug of its kind (no wonder it's so expensive).
I found this out a few days after I found out the cancer was back. Talk about being kicked when you're down. Luckily, there are co-pay relief programs out there to help out people like me who are suddenly faced with astronomical bills. My mom has made it her mission to try - and keep trying - each and every one she can find.
Of course, I don't qualify for many of these programs because several are income-based. However, there are some that are not, like the Patient Advocate Foundation, which gave me enough funds to cover one co-pay! I was thrilled. My mom and I have also been working with the social worker at Roosevelt Hospital, who has been very persistent as well and has been helping me apply for various other programs. Through her help, I received $450 worth of gift cards for groceries (yay Trader Joe's!) and restaurants from the Pink Daisy Project to help offset the cost of my medical bills. I am so thankful to these programs for their assistance, and I hope that someday I'll be in the financial position to be able to thank them with a donation of my own.
In other news, this coming weekend, on October 15th, my family and I will be walking in the Making Strides for Breast Cancer Walk in Bedford, PA, as part of the Omni Army team (the Omni Bedford Springs Resort there is a client of mine and we're going for a nice fall weekend getaway). If you would like to donate to our team, you may do so here!
Also, I am quoted in the October issue of Prevention magazine! Cool, huh? You can see the story here (I'm at the very end).
Thanks again to all my blog readers for your continued support!