Last time I blogged, the plan was to get re-scanned in November. When we looked at the calendar we realized this meant my scans would be during the week of Thanksgiving, so Dr. Sara decided that rather than add some unnecessary drama to the holiday, we'd wait another 3 weeks and do them in mid-December. This would give the drugs a little more time to work anyway, since between all the co-pay and pre-authorization stuff it took a little bit of time from when the drug was first prescribed for me to actually get it and start taking it anyway.
So, throughout October and November, it was business as usual. I took my Tykerb and Tamoxifen dutifully every day, and went every three weeks for Herceptin. I continued to feel no side effects from any of the drugs, and stayed active and healthy (even running a 5K in freezing, windy and rainy weather!). I even had a music therapy session during one of my treatments (the playlist, handpicked by me, included Coldplay, Kings of Leon and Florence and the Machine). I even sang along and played accompanying instruments, including a xylophone and the "ocean drum" - and didn't frighten everyone out of the Infusion Suite!
My most recent treatment was the Tuesday before Thanksgiving, and on that day I set up my next PET/CT scan, which was scheduled for December 13th, with the "results show" taking place during my next Herceptin treatment on December 15th.
And then this past Monday I got an unexpected call from Dr. Sara. Much as I love Dr. Sara, it's usually not a good sign when he calls me out of the blue. He was concerned about the results of the blood test I had the week before. One of the cancer markers they test for called CEA, which for me was always in the normal range, had suddenly spiked. He told me that this is most likely an indication that the cancer is spreading and that he wanted me to get scanned right away so we could see what we're dealing with as he was almost certainly going to have to change my treatment.
My reaction: "well, this sucks". Dr. Sara agreed with me. I then asked him if this test was pretty foolproof or if it was known for false positives; I was trying to look for any kind of bright side to this news. Dr. Sara said that yes, of course false positives are possible, but that he does not think that is what is happening here - he told me that he expected my scans to be worse than they were in August. Dr. Sara has said from day one that he would always be 100% honest with me and would never sugarcoat things, and he has stayed true to his word; something I really appreciate even though this was a crappy and extremely emotional draining call to get.
So, my PET/CT was quickly scheduled for Wednesday. On Tuesday I followed the required special diet (yogurt! salad! eggs!), and the scan was pretty routine. For my contrast "milkshake" I chose apple this time; seemed like an appropriate seasonal choice.
It is amazing what the physical reaction to stressful news like this can be; a lot of people would be losing sleep but for me it's the opposite. Almost as soon as Dr. Sara called me on Monday, I felt a crushing exhaustion. I even went to bed at 9pm one night and slept for 10 hours - that is not like me at all (I'm more of a night owl), but I guess this kind of stress takes a lot out of you.
And then on Thursday, my parents and I went to find out the results of my scan. Dr. Sara cut right to the chase. If you remember, in August when my scans showed that the cancer was back, it was in three main places: my liver, lymph nodes near the liver, and a small spot on my spine. This week's scan showed that the cancer in the liver was actually slightly decreased, the spot on the spine was unchanged, and the cancer in the lymph nodes near the liver was slightly increased. In addition, there are new spots lighting up in lymph nodes on the left side of my neck.
So, this was obviously not great news, because you never want to see new spots, but Dr. Sara said that it was not nearly as bad as what he thought we might see. He thought there was a good chance we'd find that it was rampant through the liver, or that it had spread to my lungs or some other vital organ. Luckily, this was not the case.
Compared to what we thought we might hear that day, we were all pretty relieved to learn that the news was not as dire as it could have been. It's funny how your reaction to things all depends on what your expectations are. If my blood test had not spiked and these were my routine scan results, we probably would have been a lot more disappointed because we would have gone in hoping for no new or increased spots. But, when you are pretty much expecting it to be bad, and it turns out not to be quite as bad as you were thinking, it really improves your reaction to things.
So, what does this mean for my treatment? Well, my treatment will completely change. I am being taken off all of the drugs I am now on - Herceptin, Tykerb and Tamoxifen - and I will start getting a relatively new chemo drug called Halaven. This is a 5-minute infusion which I will get at the hospital. The cycle is "two weeks on, one week off" - just like the Navelbine was. I start tomorrow, Monday, Dec. 5, and I will go again next Monday the 12th, then have a week "off" then the cycle will start again on Dec. 27th.
Dr. Sara said this drug is very well tolerated, meaning there are not any common crazy side effects. Some people feel a little fatigue, and some people experience neuropathy (tingling in hands and feet) but since I've been on chemo drugs where these side effects were much more common and I didn't have them, he expects that I won't really have a problem with this drug. Of course you never know how you're going to react to a new drug, but I've had a LOT of chemo drugs and luckily tolerated them all really well, so I'm pretty confident that will be the case with this one too.
We are going to try this drug for three months, and then - assuming I still feel good and no more blood tests spike between now and then - I will get scanned again in the beginning of March. Until then, I will keep living my life as normally as possible!
In other news, last time I mentioned that I had received some financial assistance from the Patient Advocate Foundation and the Pink Daisy Project to help me with the exhorbitant Tykerb co-pays I had. Well, I have two more charities to add to that list! Team Continuum was very generous to me, providing $600 to my condo management company to pay off my condo fees for the next few months! And, CancerCare provided me with more than $300 to help offset my financial burden as well! I can't even express how appreciative I am to these organizations for helping me through this difficult time. And I especially have to thank two people who put a lot of time and energy into researching programs I would qualify for and helping me to apply for them: my Mom, and Lori, the social worker at Roosevelt. All in all, with their help I ended up receiving assistance to help pay for more than half of the $5400 I had to pay in three months of Tykerb co-pays.
And luckily, the crazy co-pays did indeed end after three months, and not because Dr. Sara took me off the drug. In early November, I was able to change my health insurance plan, and under the new plan, my Tykerb co-pay became $30 vs. $1800. What a relief that was!
And finally, I have say thank you to all of you who donated to the Making Strides for Breast Cancer Walk that my family and I did on October 15th in Bedford Springs, PA. I really appreciate your generosity and know that your donations are going to a good cause to help other cancer patients like myself!
We had a great time - here are a few pictures from the weekend:
Here is all of us in our "Omni Army" team shirts before the walk.
My Mom and me in our "Survivor" gear:
The "Human Pink Ribbon" of survivors (my mom and I are near the top left):
Me and Claire:
Thanks again for all your support and in case I don't blog again this month, HAPPY HOLIDAYS to all!