I have been meeting with my radiation oncologist every Friday. His name is Dr. Rockhill and I have found him to be absolutely fantastic. Because my treatment ends on a Wednesday I saw him for the last time during radiation last Friday.
He assured me again that I am doing very well and I am right on par with where I should be in my energy, symptoms, and responses. He feels that the steroids have been very helpful for me and he will begin to slowly wean me off of them next week.
He reminded me again that the symptoms can linger and there is no expected end date for fatigue. We also talked at great length about how a person's ability and willingness to live a "normal" life directly impacts how well a person heals and ultimately survives. One of the number one factors of longevity is how "normal" someone feels. This is motivation for me to find ways to get out of the house and to make and effort to meet with friends and to find new ways to be active. Of course my new normal will be different, but I'm really looking forward to some new set of routines.
He shared that my oncology team met and discussed my tumor and they were split on the next step of treatment. No matter what I will have a month off and I will meet with my team on May 27th. It seems like the next course will be to stay with the original plan and continue chemo on 5 out of 28 day cycles. We were told in the beginning that the best thing to do is to be aggressive with our treatment and so if that's what the doctor's recommend that's what we will do. I haven't had any side effects at all from the chemo that I can identify. The 5 out of 28 cycles are a higher dose than what I have been on, but I can hope that if that is the round I end up on the side effects will be minimal.
I asked a lot of questions and tried to push hard for information. I wanted to know what happens next... after chemo. Do I stay in a cycle of chemo over and over again? Radiation isn't an option again for a little while if there is regrowth. The doctor said at this point in time I don't qualify for any of the other ongoing studies that they have and he reminded me again and again that I have the best possible well behaved tumor I can have. I have the genetic make up that is favorable, I'm young, in good health, and I had a full resection. Some of the other options if there is regrowth are vaccine therapy or another surgery.
He also reminded me again that the MRI I will have on May 27th will likely look pretty ugly. My brain is very swollen from radiation and is agitated. He said that very very often there will be areas that appear to look very much like new tumor growth but are not. The swelling causes areas to show up on the MRI that are called pseudo tumor growth. This is why they take this post radiation MRI and use it as a baseline to see how the MRI's from here on out compare. I'll have another MRI one month after the one on May 27th to do the first comparison and if there is pseudo growth it should subside by the June MRI. After that point if the pseudo growth dissipates then I'll have MRI's every three months.
I pressed him on whether the prognosis has changed at all due to the genetic markers or other factors and he felt that the case is still the same as it was at the first post surgery visit with the nuerosurgeon. He assured me again that I have a very well behaved tumor and I should feel really good about all of the factors involved.
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