Feb 15, 2012 - 5:49 pm
I have not posted an update in a while.
My darling sister is doing well (if one can do well from a diagnosis such as hers, anaplastic astrocytoma). Her MRI brain is improving, she just got the results of her latest one; there is no abnormal blood flow seen on the MRI spectroscopy. The cyst that had formed in the resection bed is getting smaller, now it is 5x2x2.5cm. She is working full time and she just completed a 5k race for miles for hope (a charity for brain cancer). She actually gotten quite good at running, and she signed me up and my husband to do another 5K.
She is going down to 2.5mg of prednisone tomorrow and I am glad because steroids affect the immune system and I want her immune system to attack the remaining microscopic tumor cells left behind. As I am typing this, she is on her day 4th of 5 of Temodar (plus Xeloda, the chemo that her tumor cytology analysis showed being sensitive to) both oral pills; she is feeling more tired than usual but her friends convinced her to go an event downtown where a lot of young professionals meet; she loves putting on a pretty dress, high shoes and feeling that she is not a brain cancer patient but only a nuclear physicists chatting with lawyers, doctors, etc.. I will go as well and mingle.
One thing that is always on my mind is recurrence. When I read past posts on this website, I see that people sometimes are doing better, go on with their lives and suddenly, the tumor is back and the nightmare comes back in full force, even worse than before. I know that some tumors don't come back; but all health professionals agree that it does most of the time.
To that effect, I am not comfortable waiting. The treatment offered is just not good enough. So night after night, I read about clinical trial. There are so many barriers to participate to a clinical trial that I would laugh in ridicule if it were not for the fact that I want to cry.
I believe in a few things:
1) It is better to approach the tumor via multiple treatment: this is why I have been looking into immunological adjuvant. There is a new one the NY-eso-1 vaccine trial. But when I asked for more info, such as testing the tumor sample to see if it carries the NY-eso-1 antigen (because if it does not, then why give the vaccine???), the secretary told me that they do not test for it; which is a contradiction from what I read at clinicaltrial.gov.
2) About the risks of clinical trial or trying something a bit new: I would rather die trying to beat the disease than have the disease beat me. I read that once in a post here, and it made a lasting impression. My sister feels the same way.
I want and I need to create options for her while her MRI is stable. Because if there is a recurrence, I will drop in panic mode and I don't want to make a mistake and pick the wrong treatment. My friends always tell me that I have done everything that can be done and the rest is not up to me. I disagree. There is still much much more to be done. Look at Michael J. Fox changing the face of Parkinson.
I love you all,