Monday, January 16, 2006

Decision

My mother has decided to go with Picozzi at Virginia Mason (with some strong hinting on our parts). I think this is the right decision based on the preliminary results they have had there but I'm really apprehensive about how difficult it is going to be for her. We're now setting up the logistics. She'll probably be beginning treatment at week 10 which makes me a little nervous but Picozzi seemed to think that would be OK. We'll probably do the latter phases locally or in California.

Friday, January 13, 2006

Consultation with Dr. Laheru

We went back to Johns Hopkins to finally meet Dr. Laheru. This is the last oncologist we have on our list to meet. My mother asked him what kind of name "Laheru" is and he replied that it is Indonesian. Dr. Laheru went over my mother's history and then went over his recommended treatment plan. This would be radiation with Xeloda and possibly Tarceva followed by Gemcitabine alone. One thing I felt is that the Hopkins folks stress that my mother's prognosis is very good from surgery alone and that this may have some implications for her treatment plan. Dr. Laheru also mentioned in response to our question that Xeloda was probably equivalent to 5FU but more convenient. He said that if you drew and tested blood after somebody had done 5FU vs. Xeloda, no doctor would be able to detect any difference. He also mentioned that the levels of Xeloda that they would give would also be treating the cancer "systemically" right from the start.

We also talked a lot about the GVAX vaccine. Apparently, they are planning a booster study that they are going to open sometime later this year. He said that my mother would be eligible to receive the vaccine under this study although this would happen after she finishes her chemotherapy. I asked if there were any ways to offer it sooner and he said unfortunately there was no way that would be possible. I really hope that this study gets launched and that the criteria are such that many people can benefit from it.

He mentioned that Hopkins might be able to offer the VMP but it seems like it might be a better idea to do the first part of the protocol at Virginia Mason since they are so experienced with it. We could do the latter part at Johns Hopkins. He wouldn't recommend using Avastin as that is too toxic.

My mother really liked Dr. Laheru and mentioned afterwards a few times that we should use Johns Hopkins. As I mentioned, the last one always seems to be winning. Dr. Laheru stressed that treatment should begin soon (we are at 6.5 weeks post whipple). We now have to make the big decision this weekend.

Dr. Cameron sent us a very thoughtful thank you note for the scarf today.

Monday, January 09, 2006

Consultation with Dr. Picozzi

On January 4 we went to Seattle to meet Dr. Picozzi. Mom did very well on the trip. We stayed at the Inn at Virginia Mason which is attached directly to the hospital. The restaurant at the Inn was very good but the prices reflect that. Anne had scheduled us for bloodwork, a CT scan, a chest X-ray and finally a consultation with Dr. Picozzi. Virginia Mason seemed small in comparison with Hopkins but the atmosphere in the Buck building was very pleasant. The cafeteria was reasonable but on that day the food looked better than it actually tasted. At the Hopkins cafeteria I thought the food tasted better than it looked.

We finally had our chance to talk to Dr. Picozzi. He started off by asking us about our backgrounds (schools, jobs, etc.). He seemed really interested in this and I'm not sure if it was because he wanted to make us feel comfortable (people like talking about themselves) or because he liked to get to know his patients. My father, sister and Dr. Picozzi had all gone to Yale and he seemed very pleased with that.

Dr. Picozzi mentioned several things of interest:
  • Without adjuvant treatment, the cancer recurs locally 30-60% of the time and recurs systemically 80% of the time.
  • It's better to treat systemically sooner rather than later (VMP does both at early stage).
  • The standard chemotherapy vs. standard chemoradiotherapy give about the same survival rates.
  • He's wary about Xeloda as opposed to using 5FU since there have been no tests to confirm that it is as effective.
  • VMP gives long term survival of 40-50%.
  • Results at Virginia Mason may be slightly better than those in the initial publication.
  • He's made the VMP less toxic recently and believes that the side effects are no worse than standard treatment if you do the VMP at Virginia Mason with their supportive care.
  • Only one person dropped out and there have been no deaths.
  • Average age of patients treated under VMP is 64.


This is the serene and comfortable waiting room at Virginia Mason.

Doctor Picozzi also mentioned something interesting about my Mom's condition we hadn't heard before. He said that her CA 19-9 pre-surgery was very high - 801.7 and that some institutions would not even operate with such a high number. This might indicate that the chances of some "occult cancer" being around is higher. However, he said that her current CA 19-9 level of 15.7 was a good sign that maybe all the cancer was removed. He also mentioned he had floated the idea of starting a trial with Laheru where they would layer the GVAX vaccine on top of the VMP protocol. I think that would be a fantastic idea.

We were pretty happy with the visit. Dr. Picozzi seemed very knowledgable and very kind. We seem to like the Doctor best that we have seen most recently for some reason :->. If it's true that doing the VMP now is not much more difficult than standard chemoradiation, then it seems like a great approach. My mother definitely needed to hear from Picozzi that the protocol was not too toxic for her and that it was not much more difficult than the standard treatment. We spent the rest of the day looking for a place to stay should we decide to come to Virginia Mason for treatment.

Sunday, January 01, 2006

New Years and Mom's 70th Birthday

My mother is a New Years baby so we celebrated New Years and my mother's 70th birthday on the same day! She has been doing great since Christmas - just in time to enjoy the holidays.