Jun 01, 2012 - 12:19 am
I did take a break from posting just because I though I could tame my addiction regarding this website. But I follow your posts closely. each one of you is dear to my heart. I think of you every day whether or not your love one is still alive or not.
I have been desperately searching for a decent immunotherapy clinical trial my sister can participate in. The last one was involving alloTCL in the Omaya reservoir. But once again we were turned down because there is no recurrence. My sister said to me:
"I feel like everyone is just waiting for me to have a recurrence; just doing MRI after MRI, waiting. What about doing something to prevent a recurrence?"
And I agree with her. Because we both know the numbers: that more 90 percent will get a recurrence at some point. I am sorry if I upset some of you by pointing such an awful truth. But I know the numbers and this is why I think chemotherapy just does not cut it. We could be some the lucky ones and escape the odds. But meanwhile dear people I know are further along in this road and my heart just bleeds for them, knowing what they going through. Could something else be done? Is the treatment out there but because of FDA regulations we don't have access to it? Are doctors afraid to take a risk because they rather have the cancer kill our love one rather than the treatment?
My sister has anaplastic astrocytoma diagnosed in August 2011. Thankfully she is a full functional adult writing her PhD and going out with her friends.
After surgery and radiation, she is getting (while still on chemo) MRI spectroscopy on top of getting the regular MRI with and without contrast. While the MRI are stable and not showing tumor recurrence, the choline to creatinine ratio of the MRI spectroscopy has been climbing. Normal brain has a choline to creatine ratio of around 2 to 1. She had several peaks, some as high as 9 to 1.This can represent more cell turn over i.e cancer cells. My sister -the physicist- actually understands the graphs better than I do, and she took the lead when talking to her doctor. However the neuro oncologist is puzzled because my sister does not have any increase in the blood flow (a definite sign of tumor). We were told it could be a calibration error of the machine and my sister will get the MR spectroscopy repeated as soon as the machine are recalibrated. However if it shows the same thing, then she will be moving to having MRIs every month instead of every 2 months.
I hoping that the choline to creatine ratio is back to normal. Meanwhile my sister is still living to to the fullest. A friend and her are going to Denmark and Russia in July. They should have a grand time.
We are going to have to stop the Xeloda (her WBC count and platelets were trending down); xeloda was the chemo experimental pill that we decided to add on top of the Temodar because the genetic analysis of the tumor showed a sensitivity to it. But meanwhile, her Neurooncologist agreed to inject her Omaya reservoir with chemo; it will not be absorbed by the brain but will at least attack (in theory) the cancer cells on the cyst.
"The side effects are minimal for an uncertain benefit." said her neuro-oncologist. He is a wonderful man by the way. He spends over an hour with us at every appointment. I could not ask for a better man. I am just afraid that no one can stop brain cancer not even the beast doctor in the world.
The last thing I asked him was if anything could help enhance the Temodar and he said yes Poly-MVA. Has someone heard about it? I was looking for POLY-ICLC a few months back and could not find a pharmacy that would sell it. But apparently poly-MVA (lipoic acid) is easier to find and is seen as a safe supplement by the FDA and therefore is not a presciption.
Overall, I have not accepted my sister's diagnosis; I will never accepted it. Life as know it stopped making sense the day she was diagnosed. I have not cried as often but I am as angry.
We planted a small garden in the backyard and planted tomatoes, corn, cucumbers, pumpkins and everything is growing so fast!
with lots of love,