Last week I had my first infusion of Avastin, the chemo drug that my doctors hope will help minimize the dead cells left over from radiation and possibly slow or stop the growth of my tumor. The infusion only took about 30 minutes and I have had no side effects. Luckily, I only have to have one infusion every 15 days, for 6-8 weeks, so my schedule is definitely manageable. I think the plan is to have another PET scan and MRI after the 6-8 weeks to see if it is working.
A good friend of mine from high school, Grace, has been asking some of her medical colleagues in NYC if they know of any brain tumor studies and she has gotten me the names of the heads of the brain tumor centers at both Columbia and Cornell! With all of the treatments I've already had, it is unlikely that I will qualify for any "conventional" studies, but one of the doctors said they could review my history and try to think "outside the box". My dilemma at this point is how do I get my VAST amounts of medical records from Kaiser and UCSF to these folks?!? At least now I have a job to do for the next week or two, rather than binge watching Netflix shows :)
That's it for now :) I happily don't expect to have anything exciting to report for a few weeks. I don't want to keep bombarding your inboxes with depressing brain tumor news. I'm going to try to post here more often, so if you're curious about how my treatments are progressing, please check back here. I'll likely just send an email if something big happens. So, in my case, no news is probably good news :)
Tuesday, August 30, 2016
Thursday, August 18, 2016
New Treatment Plan for My Latest Tumor Drama
Hi again :)
Well, it's been another year since my last blog post, but that is a good thing because I generally only blog when I get bad news.
First, I'll get you up to speed on what has been going on with me, health wise, in the last year. I did 2 weeks of radiation in the end of July, 2015, as I went into detail about in my last post. Then on November 15th, I fell and broke my left leg! I broke my fibula bone, down near my ankle. It is the smaller of the 2 shin bones. I had 3 different casts, then a couple boots, all lasting until March! And I was in a wheelchair most of the time as I couldn't use crutches because I can't lift my lower leg due to the weakness I already have in that leg. Since my bedroom is in the basement of my parent's house, I had to sleep in the office on the main floor for 4 months. It is all healed though now and good as new :) Needless to say, after having 2 brain surgeries, doing radiation and breaking my leg, I will not remember 2015 as one of my better years, lol.
Throughout this year, I've had pretty significant fatigue, which is expected after surgery and radiation. I sleep a lot and get physically exhausted pretty easily, but I'm learning to limit the number of tasks I plan for myself in a day and to give my brain frequent breaks by taking lots of naps. It is pretty frustrating because I've always taken pride in being independent and now I have to ask for a lot of help from my parents.
In addition, the weakness in my left arm that my radiation doctor warned me about has become a reality. I can barely hold anything in my left hand anymore and I actually sort of forget that my left hand exists! It is very strange and occasionally very funny. I try to take my morning pills with food, so this morning, I wanted to go upstairs with my pills to eat breakfast first. I needed to put my pills in my left pocket as my right pocket was already full, so I put a bunch of pills in my left hand and put my hand in my pocket. Then I started to walk out of the bathroom and realized that my hand was still in my pocket! So I pulled my hand out, started to walk out of the bathroom again, then realized that the pills were still in my hand! Then after breakfast and I was ready to take the pills, I reached my hand into my pocket again and when I pulled my hand out, the pills fell all over the floor. I had already told my mom about my issues getting them in my pocket, so when they went scattering across the carpet we almost cried laughing :)
Mom and I took a fabulous trip to San Diego to watch the Giants play the San Diego Padres this July. Although the Giants lost and we had to pace ourselves due to my fatigue, we still had a great time and the weather couldn't have been nicer. This was the third year that Mom and I have gone to SD when the Giants are playing down there and I think we'll definitely make it an annual event :)
On August 9th, I had a routine MRI. That same day, The docs showed us the MRI images and compared them to an MRI I had in June. It was really disturbing because it looked like my tumor had blown up in just a couple months. The mass where my tumor is was significantly larger, something we had never really seen before. Luckily, although tumor is a malignant, grade III (of IV), my type of tumor is slow growing and when we have seen growth in the past is was always very slight. So this definitely observable change took us by surprise. However, the docs said that the growth could be 3 different things or a combination of them all: 1) tumor growth, 2) necrosis (dead cells) from radiation, (which is what you hope for from radiation) or 3) edema, swelling from surgery and radiation. They needed me to have more tests to help determine what we were dealing with.
My mom was out of town, so my poor dad had to drive in to Sacramento 4 times last week for MRI's and a PET scan and to pick up my mom at the airport. It's about an hour and a half each way. For the PET scan, I had to fast from dinner the night before, then they injected me with a radioactive glucose solution. The idea is that active tumor cells use glucose for energy so it is their food. Since I had been fasting, if they saw a bunch of activity, it would show where starving tumor was now enjoying a glucose buffet. I also had what is called a spectroscopy MRI. I had an IV pumping me with something throughout the MRI, where I usually just have a one time injection. I'm not sure what the difference was, but it was another way to determine what was tumor, necrosis or swelling. I'm sorry I'm going into so much detail, but I find this stuff kind of fascinating and I thought some of you might too :)
I spoke with my oncologist yesterday and he said that the "majority was inactive". There was just a small spot in the middle that showed some activity, whew! I'm already taking a steroid to help minimize any swelling and I am going to start taking an IV chemo drug called Avastin for 6-8 weeks. I've already taken Avastin to treat my tumor a few years ago and I tolerated it really well. It worked for a few weeks but then stopped working and I quit it. Apparently though, Avastin is also used to reduce necrosis and my doc said there is a chance that it could start working again on the active tumor. So hopefully a two birds with one stone scenario. If this doesn't seem to help, he said there is another chemo drug that they can add too, but I'm not familiar with that one.
So, once again, it seems I may have dodged a bullet for a while. I was supposed to move into an apartment in Sacramento tomorrow, but we decided that this isn't a good time for me to try to move out. For now, I've come to peace with the likely fact that I may never be able to live independently again. Though Fiddletown is remote, for those of you who have visited my folk's house, you can understand why I consider myself pretty lucky to have such a beautiful, serene place to retire. My parents have been amazing through all of this and they help keep me positive and laughing, while giving me space when I need it. I know it is a parent's job to help their children, but I don't think mine realized they'd need to help me quite as much as they do and for as long as they have! And they do it all without complaining (at least to me! I have a feeling some of you may have been the recipients of their bitching about me, lol! I'm well aware of the fact that I can be hard to live with.) I am serious when I say that I really lucked out in getting Tom & Debbie Graham as my parents! I love you guys SO much!!!
Well, it's been another year since my last blog post, but that is a good thing because I generally only blog when I get bad news.
First, I'll get you up to speed on what has been going on with me, health wise, in the last year. I did 2 weeks of radiation in the end of July, 2015, as I went into detail about in my last post. Then on November 15th, I fell and broke my left leg! I broke my fibula bone, down near my ankle. It is the smaller of the 2 shin bones. I had 3 different casts, then a couple boots, all lasting until March! And I was in a wheelchair most of the time as I couldn't use crutches because I can't lift my lower leg due to the weakness I already have in that leg. Since my bedroom is in the basement of my parent's house, I had to sleep in the office on the main floor for 4 months. It is all healed though now and good as new :) Needless to say, after having 2 brain surgeries, doing radiation and breaking my leg, I will not remember 2015 as one of my better years, lol.
Throughout this year, I've had pretty significant fatigue, which is expected after surgery and radiation. I sleep a lot and get physically exhausted pretty easily, but I'm learning to limit the number of tasks I plan for myself in a day and to give my brain frequent breaks by taking lots of naps. It is pretty frustrating because I've always taken pride in being independent and now I have to ask for a lot of help from my parents.
In addition, the weakness in my left arm that my radiation doctor warned me about has become a reality. I can barely hold anything in my left hand anymore and I actually sort of forget that my left hand exists! It is very strange and occasionally very funny. I try to take my morning pills with food, so this morning, I wanted to go upstairs with my pills to eat breakfast first. I needed to put my pills in my left pocket as my right pocket was already full, so I put a bunch of pills in my left hand and put my hand in my pocket. Then I started to walk out of the bathroom and realized that my hand was still in my pocket! So I pulled my hand out, started to walk out of the bathroom again, then realized that the pills were still in my hand! Then after breakfast and I was ready to take the pills, I reached my hand into my pocket again and when I pulled my hand out, the pills fell all over the floor. I had already told my mom about my issues getting them in my pocket, so when they went scattering across the carpet we almost cried laughing :)
Mom and I took a fabulous trip to San Diego to watch the Giants play the San Diego Padres this July. Although the Giants lost and we had to pace ourselves due to my fatigue, we still had a great time and the weather couldn't have been nicer. This was the third year that Mom and I have gone to SD when the Giants are playing down there and I think we'll definitely make it an annual event :)
On August 9th, I had a routine MRI. That same day, The docs showed us the MRI images and compared them to an MRI I had in June. It was really disturbing because it looked like my tumor had blown up in just a couple months. The mass where my tumor is was significantly larger, something we had never really seen before. Luckily, although tumor is a malignant, grade III (of IV), my type of tumor is slow growing and when we have seen growth in the past is was always very slight. So this definitely observable change took us by surprise. However, the docs said that the growth could be 3 different things or a combination of them all: 1) tumor growth, 2) necrosis (dead cells) from radiation, (which is what you hope for from radiation) or 3) edema, swelling from surgery and radiation. They needed me to have more tests to help determine what we were dealing with.
My mom was out of town, so my poor dad had to drive in to Sacramento 4 times last week for MRI's and a PET scan and to pick up my mom at the airport. It's about an hour and a half each way. For the PET scan, I had to fast from dinner the night before, then they injected me with a radioactive glucose solution. The idea is that active tumor cells use glucose for energy so it is their food. Since I had been fasting, if they saw a bunch of activity, it would show where starving tumor was now enjoying a glucose buffet. I also had what is called a spectroscopy MRI. I had an IV pumping me with something throughout the MRI, where I usually just have a one time injection. I'm not sure what the difference was, but it was another way to determine what was tumor, necrosis or swelling. I'm sorry I'm going into so much detail, but I find this stuff kind of fascinating and I thought some of you might too :)
I spoke with my oncologist yesterday and he said that the "majority was inactive". There was just a small spot in the middle that showed some activity, whew! I'm already taking a steroid to help minimize any swelling and I am going to start taking an IV chemo drug called Avastin for 6-8 weeks. I've already taken Avastin to treat my tumor a few years ago and I tolerated it really well. It worked for a few weeks but then stopped working and I quit it. Apparently though, Avastin is also used to reduce necrosis and my doc said there is a chance that it could start working again on the active tumor. So hopefully a two birds with one stone scenario. If this doesn't seem to help, he said there is another chemo drug that they can add too, but I'm not familiar with that one.
So, once again, it seems I may have dodged a bullet for a while. I was supposed to move into an apartment in Sacramento tomorrow, but we decided that this isn't a good time for me to try to move out. For now, I've come to peace with the likely fact that I may never be able to live independently again. Though Fiddletown is remote, for those of you who have visited my folk's house, you can understand why I consider myself pretty lucky to have such a beautiful, serene place to retire. My parents have been amazing through all of this and they help keep me positive and laughing, while giving me space when I need it. I know it is a parent's job to help their children, but I don't think mine realized they'd need to help me quite as much as they do and for as long as they have! And they do it all without complaining (at least to me! I have a feeling some of you may have been the recipients of their bitching about me, lol! I'm well aware of the fact that I can be hard to live with.) I am serious when I say that I really lucked out in getting Tom & Debbie Graham as my parents! I love you guys SO much!!!
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