Mike and I created a list of questions we wanted to be sure to ask during our appointment with Dr. Kocs. We also decided to record the conversation so we don't miss anything. For those that have never been in a similar situation, it is quite common for the patient and/or their support person to totally shut down when they hear "cancer" or "it's spreading". Everything after that is a blur .... it's like the whah whah whah you hear in the Charlie Brown movies; you can't make out a word of what is being said. Here is a high level summary of what we discussed:
- What about the T11 and the liver? There are three things on the scan that concerned Dr. Kocs: the liver (we are all pretty sure that it is cancer), the T11 (the density of the bone is different but it bears watching and may include more bone scans in my future), and Voldemort (the radiologist had a difficult time discerning where the margins were on this tumor, but it appears that it is growing, which is not good).
- We both agree that a liver biopsy is not necessary, since we all agree that it is cancer, so the results of the biopsy will not change my overall prognosis or the new treatment protocol
- Taxol has quit working. We started on Taxol to quickly shrink the tumors in the neck as they are the biggest risk to me; Taxol did its job. We are fortunate the Taxol worked as long as it did.
- We had always planned on moving to an endocrine based therapy soon anyway, which is an option for me because my cancer is still hormone sensitive.
- What is the goal? To maintain the cancer or to kill the cancer. Dr. Kocs wants to kill the cancer. I'm down with that!
- When diagnosed with metastatic breast cancer, the overall goal is longevity and quality of life. We have a long list of treatment options available to us.
- The endocrine based therapy is a targeted treatment; Ibrance blocks an enzyme that helps hormone sensitive cancers grow; along with a hormone suppressant
- Ibrance is the standard treatment based on the characteristic of the cells itself and not specific to ILC or IDC
- The expectation is that the new treatment is will kill the cancer in the liver
- We are lucky in that I don't have a lot of cancer in my body - his words, not mine. Good to know.
- My three year plan is realistic - this is the closest he has ever come to give me a timeline that isn't only a month or two out. Makes me very happy!
- How do we monitor the cancer going forward? Imaging and blood work; pushing for PET
The new treatment? Ibrance (targeted therapy because it is targeting specific enzymes within the cell .... but it is still chemo, just in pill form) plus Faslodex (shots). I have the Faslodex shot every two weeks, the Ibrance pill every day for 21 days, then 7 days off. Blood work throughtout to see how I am tolerating the treatment.
So what are the side effects? They are numerous, some can be severe:
- Nausea
- Vomiting
- Loss of appetite
- Diarrhea
- Tiredness
- Weakness
- Hair loss
- Mouth sores
- Numbness or tingling in legs and hands
- Lower ability to fight infections (low white blood cell counts)
- Lung issues
Because of the strong possibility that I could experience low white blood cell counts (79% of patients experience this side effect), the doctor's office suggested that I either take time off or work from home if the blood cell counts become an issue or if we have a lot of viruses or other illnesses going around the office. For me, a bad cold could land me in the hospital. Here is hoping I handle this treatment as well as I handled the Taxol and that my blood levels stay strong!
Overall, I remain hopeful.
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