NYC - Here we come!
We’re off to New York City today! My parents are meeting us there and I have an appointment at Memorial Sloan Kettering tomorrow with Dr. Sabbatini. MSK is one of the best cancer hospitals in the country and we have been wanting to go for awhile now. We decided to take a few days in New York and so we rented a two bedroom/two bath apartment in mid-town until Sunday. It is actually less expensive then two hotel rooms and the apartment is about 1300 sq ft. Should be fun!
I haven’t been out of the house much these past weeks so I am a little apprehensive about traveling and being away. Isn’t that crazy? I used to travel for my work all of the time and always loved it. I do have that excited feeling about getting on the airplane today and going somewhere different. I have been to NYC many times but Sean has not and so it will be fun to see it through his eyes.
What I hope for during this trip is to get another perspective from an expert doctor. When we realized the Carbo/taxol wasn’t working in September we talked to Dr. Sabbatini on the phone and his first comment was that I hadn’t tried that much yet in terms of treatment. From my perspective, I felt like my options were quickly running out and after I talked with Dr. Sabbatini, I felt more hope. I would also like to have some fun, take my mind off of the situation and enjoy.
As far as the Doxil is concerned, I do think it is working because I was starting to feel bloat and pain in my abdomen and now, it feels like it is loosening up a bit. I am cautiously optimistic about it as I seem to feel different day to day, but I do feel better overall. Not as good as I did this summer, but I think it is improving. This would be really incredible because then I know I have this option if the PARP doesn’t work for me.
I will give an update next week…
Love,
Marissa
P.S. Thanks so much Bonnie for the lovely flowers and to Margaret for always thinking of me and treating me to dinner every now and then!
I haven’t been out of the house much these past weeks so I am a little apprehensive about traveling and being away. Isn’t that crazy? I used to travel for my work all of the time and always loved it. I do have that excited feeling about getting on the airplane today and going somewhere different. I have been to NYC many times but Sean has not and so it will be fun to see it through his eyes.
What I hope for during this trip is to get another perspective from an expert doctor. When we realized the Carbo/taxol wasn’t working in September we talked to Dr. Sabbatini on the phone and his first comment was that I hadn’t tried that much yet in terms of treatment. From my perspective, I felt like my options were quickly running out and after I talked with Dr. Sabbatini, I felt more hope. I would also like to have some fun, take my mind off of the situation and enjoy.
As far as the Doxil is concerned, I do think it is working because I was starting to feel bloat and pain in my abdomen and now, it feels like it is loosening up a bit. I am cautiously optimistic about it as I seem to feel different day to day, but I do feel better overall. Not as good as I did this summer, but I think it is improving. This would be really incredible because then I know I have this option if the PARP doesn’t work for me.
I will give an update next week…
Love,
Marissa
P.S. Thanks so much Bonnie for the lovely flowers and to Margaret for always thinking of me and treating me to dinner every now and then!
posted by Marissa at
10:49 AM
1 Comments:
Dear Marissa,
My wife is in the MK4827 trial at UW-Madison. Like you, she is BRCA1 positive and began treatment in August 2009 with a CA125 of almost 1,000. In the two months prior to treatment her CA125 jumped from around 200 to almost 1,000 alot like your recent history.
At her last check up earlier this month, my wife's CA125 was below 50 and steadily dropping with each followup. More importantly, it seems that a high percentage (maybe all) of the BRCA1 patients in the trial have experienced similar results. That statement is based upon answers to a question I asked while in Madison earlier this month. I also told the Phase I Study nurses at UW about your blog and asked if it was OK to share our results with you and they encouraged us to do so. Its hard to believe you can have results like this with ZERO side effects but I am seeing it first hand and my wife is living it.
I don't know you and you don't know us but if you can get into this PARP inhibitor trial, PLEASE PLEASE PLEASE DO IT!!!!
My wife went through a year on DOXIL for her second recurrence and the side effects got progressively worse with each treatment. DOXIL had a cumulative effect upon her.
If you would like to talk to us, we are here for you. Or if you would prefer to talk to my wife's doctor I will give you his contact information. He is NOT a part of the trial, is a professor and researcher at a major Midwestern Cancer Center like UW, and can confirm my wife's results to date.
By
George B, at 2:17 AM
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