This paper was written by my (genius) cousin. It really does frame the complexity of cancer treatment (among other diseases). It also made me appreciate the chemo I was just on, as its intent was to cut off several paths in the growth of a tumor, not just one - as simpler chemo treatments have always done.
Meanwhile, my next MRI is this afternoon, so I'll post more then.
Wednesday, January 4, 2012
Tuesday, December 20, 2011
Watch and wait
I did get my blood test results, and while they seem to be showing a flattening out of the liver enzymes, the numbers didn't drop enough to keep me on the trial. So I'm officially off. Where does that leave me? That's not entirely clear. For now, I will keep checking the liver status on a weekly basis. I'll also be getting another MRI in early January to see where things stand. Stay tuned.
Wednesday, December 14, 2011
Liver? Why I hardly....
Humor is always helpful when the news is not ideal. I had another blood test today, and just found out that my liver
numbers are even higher than last week. Not to the point where I need to
be worried about my liver (yet), but it definitely makes it more likely that
I'll get kicked off the trial soon. I'm set up for another blood test on
Monday as per request by Dr. B, though in my mind, if it didn't drop over the
last week, then it's not likely to drop in that short of a time either
(yes, my jaded opinion). He did mention that there have been patients in
other trials who have had the same side effect and unfortunately it took them several
months to drop back down. Of course, I was hoping to be one of those patients whose numbers dropped back to normal in a week or two.
As for other options, the current response from the team is that with a liver issue like this it is not quite a safe time to start Avastin or to have surgery (with anesthesia). The Avastin option was to make this "tumor" disappear, while the surgery was to determine whether it was a tumor after all. I wasn't really looking to do either of those unless there was a growing tumor, so if I do get kicked off this trial, my likely choice might just be to wait until my next MRI and see where we stand (readers' opinions are welcome).
Either way, there will be more discussion after the next blood draw. As he mentioned, it's a day to day process right now, with options and decisions all dependent on the liver numbers.
As for other options, the current response from the team is that with a liver issue like this it is not quite a safe time to start Avastin or to have surgery (with anesthesia). The Avastin option was to make this "tumor" disappear, while the surgery was to determine whether it was a tumor after all. I wasn't really looking to do either of those unless there was a growing tumor, so if I do get kicked off this trial, my likely choice might just be to wait until my next MRI and see where we stand (readers' opinions are welcome).
Either way, there will be more discussion after the next blood draw. As he mentioned, it's a day to day process right now, with options and decisions all dependent on the liver numbers.
Wednesday, December 7, 2011
No change is good change!
Just came back from the latest MRI (which stands for "Most Reasonable Interpretation"). The white spot basically looks the same as the last time. There's still a little more information to gather, but for the most part, I felt good about the results. The next likely step is to get back onto the trial as soon as my liver cooperates. This will hopefully be confirmed tomorrow after Dr. B presents at the Tumor Board and my blood test returns negative. Of course, I'm still in "monitor mode" and will likely have another MRI in 4 weeks or so. However, it is possible that this "thing" will stay dormant for a long time, and I would be perfectly accepting of that as long as it doesn't impose itself!
Overall I guess it was not quite as good as I'd hoped for, but WAY better than I envisioned!
Overall I guess it was not quite as good as I'd hoped for, but WAY better than I envisioned!
Friday, December 2, 2011
Another slight glitch
I just found out that the chemo I'm on has negatively effected my liver, so I've been temporarily "removed". (I swear, mom, it wasn't alcohol!) Next week, when I go in for my MRI, I'll also get some more blood and urine tests and we'll see where things stand. Unfortunately this adds more grey to the situation, since one of the explanations for the potential recurrence was the period of time when I was off chemo due to the swelling...which was going to be "clarified" in my next MRI.
Tuesday, November 22, 2011
Will this be the future?
My friend Grim sent me a link to an interesting talk addressing mutated genes and cancer, in particular brain cancer. Check it out!
A little clarity goes a long way
Yesterday was my appointment with Dr. Berger and Dr. Butowski. Based
on the typical busy schedules, I ended up meeting with both of them
simultaneously. It actually turned out to be very efficient and helpful.
I had already developed a list of questions to alleviate my stress, and
their responses were about as good as I could hope for, given my
current situation. There is still a chance it might not be a tumor, and
the odds could be as good as 50/50 on that front. If it is a
tumor it's still very small, posing little risk to letting it go until
the next MRI in December. If the MRI shows significant growth, then
surgery can still be performed and it is still likely (though not
guaranteed) that I could remain on the current clinical trial. I also
feel less frustrated with "the system" after hearing them explain why it
was not removed during the last surgery. It was not an unfortunate
result of poor communication, but was primarily a more standard approach
from an expert surgeon. Don't cut things out that aren't clearly tumors
and/or clearly safe to attack. If you do, you are opening a world of
hell.
So after all that, I'm heading home to see "The Fam" for Thanksgiving with a much better feeling overall. Happy Turkey Day!
(And thanks again Kate for coming along to help advocate!)
So after all that, I'm heading home to see "The Fam" for Thanksgiving with a much better feeling overall. Happy Turkey Day!
(And thanks again Kate for coming along to help advocate!)
Friday, November 18, 2011
Wednesday, November 16, 2011
Why I might be a little nervous
Hear are the images showing what seems to me is another tumor.
Is it a tumor? Sure looks like one in this sequence of images. I'll be meeting with Dr. Berger on Monday, and after that getting another MRI in early December if I'm not already so scared into thinking I need to do something sooner.
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| MRI back in early September |
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| Post-surgery MRI showing growth in area nearby choroid plexus |
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| Most recent MRI showing further growth (?) of same area. |
Monday, November 14, 2011
Just as I'm starting to climb...
...brain cancer starts to knock me back down.
Today's MRI wasn't the best news. If you recall my worrisome post in early October, there was something discovered post-surgery. That "something" looked slightly larger today, increasing concern that there might be yet another recurrence. Internally it produced a level of frustration I haven't felt since my battle with Kaiser. How could there be a tumor visible in the pre-surgery MRI that wasn't detected soon enough to be removed during surgery? Where was the communication between the surgeons, the oncologists, and the radiation team? Most frustrating is that just as I was starting to get back into the life I love, after playing my first ultimate game, starting to exercise, and seeing the swelling finally disappear permanently; after basically one day of normalcy, it looks like I might be set back to Square 1.
I am still trying to get second opinions from Cedars-Sinai. Unfortunately, at UCSF Dr. Berger is awfully difficult to reach, and the timing couldn't have been worse as everyone seems to be out right now. Hopefully I will get some opinions as to whether this is "something" to continue watching or to extract immediately. Either way, I think it's time to start looking for the next treatment, since the others have all worked so well.
Today's MRI wasn't the best news. If you recall my worrisome post in early October, there was something discovered post-surgery. That "something" looked slightly larger today, increasing concern that there might be yet another recurrence. Internally it produced a level of frustration I haven't felt since my battle with Kaiser. How could there be a tumor visible in the pre-surgery MRI that wasn't detected soon enough to be removed during surgery? Where was the communication between the surgeons, the oncologists, and the radiation team? Most frustrating is that just as I was starting to get back into the life I love, after playing my first ultimate game, starting to exercise, and seeing the swelling finally disappear permanently; after basically one day of normalcy, it looks like I might be set back to Square 1.
I am still trying to get second opinions from Cedars-Sinai. Unfortunately, at UCSF Dr. Berger is awfully difficult to reach, and the timing couldn't have been worse as everyone seems to be out right now. Hopefully I will get some opinions as to whether this is "something" to continue watching or to extract immediately. Either way, I think it's time to start looking for the next treatment, since the others have all worked so well.
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