It’s hard to believe that it’s been just over 3 months since I had a craniotomy. Just over three months since a rogue cancer cell took off running towards my head, fought against all the healthy cells and snuggled into my right cerebellum to make a home. Although only a few centimeters big at the time of surgery, I had already been experiencing horrific headaches up my right neck and above my eyes. The fear of another stray cell making a home in my brain will always be a very real fear for me.
In October, I had an urgent brain CT because of headaches and dizziness. Thankfully that came up clear and the headaches have since resolved. I’m still dizzy when laying down and moving my head to the right or if I stand too quickly. This Tuesday, I had my brain scanned again in preparation for my Gamma Knife follow up with the radiation oncologist today. I am relieved that once again, my brain scan came up completely clear. It’s likely my inner ear causing the dizziness.
My appointment today went well and, assuming nothing crazy happens in the meantime, I don’t need another brain CT / follow up for 3 months – WAHOO!!
The nurse oncologist called me Tuesday after the brain scan to let me know the good news and to talk to me about treatment options. I visit MD Anderson next week but I haven’t been on treatment since October 18th when I stopped Xeloda. My skin is not improving but still looks relatively good (considering), internally I am stable, and actually quite a bit better than I was back in July. My lymphatic system is resolved and I have 3 relatively small spots lighting up in my pelvic area. My shoulder did not appear on the bone scan, though it’s possible there is stable cancer there or it’s possible it has resolved.
So I essentially had three options for treatment. I continue with no treatment while awaiting MD Anderson. The risk is just that – no treatment. When I visit MD, my assumption is that it will be a visit like the others but that they would also test me for clinical trials and see what I am eligible for. I would not actually start anything for (potentially) a few weeks / months.
Option 2 is to start Afinitor. This is a chemo pill and showed up on my Foundation One testing as an option for one of my five mutations. It is typically used in estrogen positive breast cancers, which would make the insurance coverage a battle. My oncologist would need to “sell” my case to the insurance company to try and obtain coverage. This could take a month or so. Often times, centers that have clinical trials have an easier time obtaining coverage for drugs like this since they have trials on their side, so to speak. It would be considered a second line of treatment, which would potentially eliminate me from certain clinical trials. This being said, it is also a treatment option that I can utilize at a later time, in the hopes of it working.
Option 3 is to go back on Xeloda. I have skin progression that started while I was on it previously but it was working to keep my internal progression in check – if not helping to resolve it. It would not be considered a second line of treatment since I had used it previously. I would lose my washout period, which is required for clinical trials, however since I will likely only be assessed next week at my visit, I will have time for a washout period once I know what trial I am eligible for. It’s possible that I find out that I’m eligible for a trial that has a 2 week washout period but that it won’t actually start until January. That would be quite a long time without any treatment since October, considering it would only require a 2 week washout.
So…it’s been a long week. After conversations with my nurse practitioner, my local oncologist and a whole lot of soul searching, I decided to restart Xeloda yesterday. I don’t want to risk a second treatment right now, although I like the idea of a chemo pill option again. It’s nerve-racking to not be on any treatment. Although I feel reasonably ok, there could be cancer cells dancing around my body making home where I don’t want them to be. It was not an easy decision to make but it had to be done. Here’s hoping my body decides Xeloda is the one for it and all of my cancer resolves, skin included. 😉
Aside from that, my skin is very slowly healing from radiation. Crazy to believe that I’ve literally been healing for 2 months now and I healed fully within 2 weeks before. I still have an open wound on my chest but it’s a little larger than a quarter now (crazy how much pain that small spot causes!!). The other smaller spots that were healing have scabbed over and are healing at their own pace. I know Xeloda will once again slow the healing process, and frankly I am OVER radiation burns, but it’s a risk that I need to take.
That’s my medical week, I think. Jacob is on his first round of antibiotics since last December. He came down with a wicked cough and a fever. This is the first time that we have given him Tylenol and not had his fever resolve almost instantly…it was quite nerve racking. He is slowly feeling better, thankfully, and the antibiotics are working their way through his system.
I hope you are all enjoying your week and this month of November. Rest up this weekend, enjoy time with your loved ones and continue to spread that love!!