Update 12/10/09
Seasons greetings everyone. There is a lot to catch up on here, it seems like so much has happened since my last entry.
Most important is that I am feeling better. It has not been dramatic, but more gradual. I seem to be digesting better, less of a bloat and stuck feeling in my abdomen so this is a good sign. This is a time of uncertainty in general since I cannot rely on the CA-125 and I will not have a CT scan until early January. Knowing this I am just enjoying myself as much as possible and getting lots of rest. We will be going to Florida with my parents for Christmas and the New Year and I look forward to being with my family.
I was supposed to get chemo today but my white blood cell count is low so I need to find out early next week if we are ok to go. This past round I did not get the Neulasta shot to boost the white blood cells to see if it was needed - I think perhaps it is needed since it is still low. I am disappointed but overall ok about it. Depending on the results of the CA-125 and CT scan we will see if Doxil is doing what it needs to do. Otherwise we will try something else.
I am stronger mentally then I was a few months ago when I learned the chemo wasn't working. I think therapy has done a world of good for me as well as getting out there and continuing to look for treatment alternatives, educating myself on anything and everything related to my health, connecting with friends... living now and not waiting to live...knowing that the pain and discomfort will pass... thanking God or whoever everyday for what I have, which is so much... visualizing my body healing... I am taking little steps up that mountain and I am making progress.
Merry Christmas, Happy Chanukah and Happy New Year to all of you... if you didn't like this year - you get another shot at it in January! I am ready!
xoxox
Marissa
Most important is that I am feeling better. It has not been dramatic, but more gradual. I seem to be digesting better, less of a bloat and stuck feeling in my abdomen so this is a good sign. This is a time of uncertainty in general since I cannot rely on the CA-125 and I will not have a CT scan until early January. Knowing this I am just enjoying myself as much as possible and getting lots of rest. We will be going to Florida with my parents for Christmas and the New Year and I look forward to being with my family.
I was supposed to get chemo today but my white blood cell count is low so I need to find out early next week if we are ok to go. This past round I did not get the Neulasta shot to boost the white blood cells to see if it was needed - I think perhaps it is needed since it is still low. I am disappointed but overall ok about it. Depending on the results of the CA-125 and CT scan we will see if Doxil is doing what it needs to do. Otherwise we will try something else.
I am stronger mentally then I was a few months ago when I learned the chemo wasn't working. I think therapy has done a world of good for me as well as getting out there and continuing to look for treatment alternatives, educating myself on anything and everything related to my health, connecting with friends... living now and not waiting to live...knowing that the pain and discomfort will pass... thanking God or whoever everyday for what I have, which is so much... visualizing my body healing... I am taking little steps up that mountain and I am making progress.
Merry Christmas, Happy Chanukah and Happy New Year to all of you... if you didn't like this year - you get another shot at it in January! I am ready!
xoxox
Marissa
posted by Marissa at
7:38 PM
1 Comments:
Dear Marissa,
My wife is in the MK4827 trial at UW-Madison. Like you, she is BRCA1 positive and began the trial 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, my wife is not alone. Other 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's toxicities appeared to be cumulative in her.
If you would like to talk to us, we are here for you. 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 Ohio Cancer Center like UW, and can confirm my wife's results to date.
By
George B, at 5:32 AM
Post a Comment
<< Home