We woke up to snow, and it kept snowing and snowing.
The task on our 2nd day in Boston was to get me to an appointment at the Dana Farber Cancer Center in the early afternoon. We slept in a bit then had breakfast at the Lenox before setting out into the winter weather. We know the way – down the street to the subway, wait for the D train of the Green line, then take it to the Longwood exit. All went well, our Charlie tickets worked, and we found a winter wonderland at the Longwood exit. There was a bridge over a river with lots of ducks in it and we were right in front of the Longwood hospital.
Everyone pointed us toward where we wanted to go, and after a few blocks of slippery snow, we were there. We were early, but so was everyone else, wanting to get back home as early as possible. The snow kept falling.
Dr. Nancy Lin is a specialist and researcher of HER2+ cancer that has spread to the brain. My local oncologist in Florida wanted me to consult with her. Dr. Lin says that there are 4 different scenarios for my situation and how I should be treated:
1. My brain is stable and my body is stable (where I am now)
2. My brain is progressing but my body is stable
3. My brain is stable but my body is progressing
4. Both my brain and by body are progressing
In each case a different treatment would be recommended.
Dr. Lin says that there are no studies that prove that Tykerb can prevent brain mets. Therefore she thinks the drug is probably not doing me any good now. The only study that shows that Tykerb helps is when brain mets are progressing. Then when Tykerb is combined with Xeloda approximately 25% of patients show improvement.
So … that means that I am stopping the Tykerb! I was only taking 2 pills a day, but had a very acidic stomach (I think I was developing an ulcer even though I was taking a lot of antacids), diarrhea, rashes, very itchy and sore scalp, acne, fatigue and all over itchiness. I’m only off of it for 2 days and already starting to feel better.
Dr. Lin was also encouraging. Said she had seen patients in my situation who had gamma knife to treat the brain mets and they still had a clean brain a couple of years later. Her recommendation is to watch the brain with MRIs and if little things come up to zap them with the knife. If it gets out of control (too many for gamma knife) she would recommend the Tykerb/Xeloda combo before Whole Brain Radiation (which I’ve already decided that I won’t do — that is the stopping point for me, the line I won’t cross).
I am now in the Dana Farber database and will be followed for their own research purposes. She will notify me of any clinical trials that I might be eligible for, and will confer with my local oncologist on treatment option if/when the situation changes.
The snow continues to fall. This is when we get our first call from Jet Blue that our 7:30pm flight back to West Palm Beach has been cancelled. We are re-scheduled for a flight out late the next morning. So we had back to the Lenox and check back in.
Had Guinness Onion soup and Shepherd’s pie at the Irish pub.
It is still snowing.