Hi everyone! I just wanted to let anyone who is interested know that the National Brain Tumor Society is having a walk for brain tumor research and support on August 18th in Portland. My Uncle Jimmy put together a team for the walk last year and we had an absolute blast! The sun was shining (I know, incredible, huh???) and the views along the Willamette River were gorgeous. My aunt and uncle hosted an after-walk BBQ at their horse rescue where kids (and big kids) got to go on horse rides and find out all about the great work that their rescue does for rehabbing neglected horses. It was a fun, family-friendly day and I'd like to invite anyone who is interested in joining our team to check out the links below to my personal page and our team page. If you'd like to join the team and walk with us, you can sign up on the team page, or if you're not able to walk with us, you can make a donation on my page.
Laurie's Page: http://www.braintumorcommunity.org/site/TR/Events/BTW-OR?px=2874742&pg=personal&fr_id=1840
"Walking for Laurie" Team Page: http://www.braintumorcommunity.org/site/TR/Events/BTW-OR?pg=team&fr_id=1840&team_id=51961
Other than planning for the walk, there's not too much else going on these days. I'm still on the same trial at UCSF and still doing well :) I think I'm on my 20th round and will find out the results of my next MRI on July 16th. I'm not having any new symptoms, so I'm hoping that the MRI will show that my tumor is still stable. Fingers crossed!
I have another exciting trip to look forward to after going to Portland! Mom and I recently booked a 2 week river cruise going from Amsterdam, along the Rhine River through Germany, and ending in Basel Switzerland!!! I've always dreamed of seeing the world but, in recent years, have thought that I'd never get to live my dream. This will be my first time to Europe and to any country other than Canada or Mexico. We're going in November, so it will be kinda chilly, and I hear that river cruises are mostly older folks, but we plan on seeing some awesome sights, eating amazing food and having the time of our lives :) Plus, it'll give me a good chance to channel my inner old lady by crocheting on the boat deck while watching the scenery go by!
On the topic of crocheting, I've been hard at work building my inventory of baby and kids hats to start selling them. I'm working on a website and had some business cards made and am planning on trying to get them into some local kids clothing stores and consignment shops. When I get my website finished, I'll post a link to it on here and on Facebook.
My love to you all!!! Hope you had a great 4th of July!
Thursday, July 5, 2012
Friday, March 30, 2012
Dr. Prados' Decision
Sorry I didn't write a post yesterday, but I didn't get a call from my Dr. Prados until about 5:30pm and we had some guests over, so I didn't get a chance to post.
Anyway, of course I wasn't able to get to my phone in time to answer it, so he just left a message. He said that most of his colleagues agreed that it wasn't evident enough that the tumor had grown and that they think I should continue on the same treatment I have been doing. That is good news for me since I already know that I have no side effects from this chemo and I know what to expect. There's always a little anxiety when I start a new treatment just for fear of the unknown. On his message, he said that at my next appointment, he really wants to check out my left leg's strength to see if it seems to continue to get weaker, a sign of tumor growth. I tried to call him back to ask a few questions, but wasn't able to reach him. I spoke with one of his nurses who said they would want me to get another MRI in 8 weeks. Apparently their offices are closed today and over the weekend, so I won't get to talk to him until Monday. So, at least for the next few weeks, not much new will be happening unless I lose a noticable amount of strength in my leg.
Like I promised, here it is...
The date is the day I was diagnosed with my tumor and the slash marks are for every year that I've beat the odds since. In case it's hard to tell, it's on the outside of my right calf. It's a little bigger than I was originally expecting, but I figure go big or go home :) I think I'll eventually get some flowers or something intertwined. I know I'm going to be addicted now! Now each year on January 8th, I'll go get another slash mark until they wrap around my calf, go down my ankle and cover my foot. I figure at least 50 more years :)
Monday, March 26, 2012
New News
Boy, I'm really bad at this! Honestly though, I haven't posted anything because there hasn't really been much to write about lately. I've been on the same trial drug for roughly the last 15 months with very little to tell other than the fact that (luckily), my tumor has responded well to the medication and has remained stable. Apparently, I am the last person still in this trial, as everyone else has had to be taken off of the drug because, either their tumors had grown or their immune system became too compromised. However, I received news today that perhaps my luck on this drug has worn out as well.
I had an appointment today with my doctor at UCSF to discuss the results of my latest MRI from March 20th. In comparing it to my last one from January, and another from last May, it appears as though the main mass as "collapsed on itself" somewhat, according to my doctor, making it smaller (good news), but that there is a new "tail" portion, starting to grow towards the back of my head, more into my motor strip, making him "concerned" that the trial drug I'm on is not working anymore, at least on that new tumor area. When he checked my strength and reflexes, like he does at every visit, it seemed as though my left leg has lost a bit more strength, contributing to his concern that my left side motor function is being compromised. As a result, he suggested four options for us to consider going forward:
1) Continue on the drug that I've been on for one more round and have another MRI in 4 weeks, as opposed to 8 weeks, as I've been doing since I started on it. This would likely confirm if the "tail" is growing or not and we could make a decision after that. The problem with this scenario is that to start any new trial or protocol, I have to be off of this medication for at least four weeks, so that would mean 3 weeks on the drug, an MRI, then 4 more weeks off the drug before I could start a new treatment, so nearly 2 months with very questionable benefit.
2) Start on another trial that I have already been approved for. I think I wrote about this one before. It is some kind of "nano" drug that would be given intraveinously every 3 weeks. He described it as a super concentrated amount of a drug that is already approved, that would just go right to my tumor and hopefully kick the crap out of it. So far it has been in a phase I trial, meaning that they are trying to figure out maximum dosage, which he says they are just about at, then it will go into phase II where they study more about how effective the drug is. It sounds like I would be coming in at the phase II stage, so I would be slightly less of a guinea pig. He sounds pretty excited about this drug though and its potential.
3) Start on another trial where I would have surgery and they would implant a virus directly into my tumor, then treat me with an already approved chemo drug that is known to attack this type of virus. Apparently this virus will only attack cancer cells, and this drug is known to work on this type of virus and whatever it is attacking. My doctor sounded fairly excited about this option because it is such a targeted approach. The main problem, again, is that my tumor is so close to my motor cortex, that more weakness or paralysis is a possibility from the surgery. He said that he needs to discuss it with their neuro-surgeon and make sure that Kaiser would OK the procedure.
4) I had previously been told that it would be dangerous for me to do any more radiation, but apparently over the last 10 years things have changed. He said that I could try doing more radiation in combination with a chemo drug I did in the past, Avastin, which worked for me for a while, but then stopped working and my tumor grew again. He said that using Avastin with radiation has shown much better results than Avastin alone.
He meets on Thursdays with his colleagues to discuss individual cases, so he said that he will call me on Thursday so we can hopefully decide what direction to go in. I'm taking this as some kinda bad news, but bad news that I knew was coming eventually. This doctor, Dr. Prados, is so amazing. He is direct, no beating around the bush, but also encouraging and innovative and I know he will never give up on me. I always leave his office with a sense of optimism and today was no different. I know he will be honest with me if there ever comes a point when we don't have much to be optomistic about, but he certainly has not given me that feeling at all. I just feel like this is yet another hill to climb on this damn cancer roller coaster and I'm sorry that you all have had to hang with me on it for the last decade, but just know that I appreciate all of your support! In recognition of the last 10 years since I was diagnosed, I'm finally going to get my first tattoo on Wednesday... it will be the date I was diagnosed, January 8, 2002, then 10 slash marks (you know, 4 lines, with a 5th line thru them), to mark each year since. Then every year from now on I'll commemorate that day by getting another slash. I plan on leaving enough room for 50 or 60 slash marks :) I know its kinda morbid, but I think of it as a celebration since that was pretty much the worst day of my life and I've had so many more awesome days to celebrate since then. I never fully appreciated all of the amazing people in my life until that day and have been thankful for all of you since :)
I'll post a picture of the tattoo after I get it (if it turns out good, fingers crossed) and let you know what treatment we are going to take after I talk to Dr. Prados on Thursday. Hugs and kisses to everybody!
I had an appointment today with my doctor at UCSF to discuss the results of my latest MRI from March 20th. In comparing it to my last one from January, and another from last May, it appears as though the main mass as "collapsed on itself" somewhat, according to my doctor, making it smaller (good news), but that there is a new "tail" portion, starting to grow towards the back of my head, more into my motor strip, making him "concerned" that the trial drug I'm on is not working anymore, at least on that new tumor area. When he checked my strength and reflexes, like he does at every visit, it seemed as though my left leg has lost a bit more strength, contributing to his concern that my left side motor function is being compromised. As a result, he suggested four options for us to consider going forward:
1) Continue on the drug that I've been on for one more round and have another MRI in 4 weeks, as opposed to 8 weeks, as I've been doing since I started on it. This would likely confirm if the "tail" is growing or not and we could make a decision after that. The problem with this scenario is that to start any new trial or protocol, I have to be off of this medication for at least four weeks, so that would mean 3 weeks on the drug, an MRI, then 4 more weeks off the drug before I could start a new treatment, so nearly 2 months with very questionable benefit.
2) Start on another trial that I have already been approved for. I think I wrote about this one before. It is some kind of "nano" drug that would be given intraveinously every 3 weeks. He described it as a super concentrated amount of a drug that is already approved, that would just go right to my tumor and hopefully kick the crap out of it. So far it has been in a phase I trial, meaning that they are trying to figure out maximum dosage, which he says they are just about at, then it will go into phase II where they study more about how effective the drug is. It sounds like I would be coming in at the phase II stage, so I would be slightly less of a guinea pig. He sounds pretty excited about this drug though and its potential.
3) Start on another trial where I would have surgery and they would implant a virus directly into my tumor, then treat me with an already approved chemo drug that is known to attack this type of virus. Apparently this virus will only attack cancer cells, and this drug is known to work on this type of virus and whatever it is attacking. My doctor sounded fairly excited about this option because it is such a targeted approach. The main problem, again, is that my tumor is so close to my motor cortex, that more weakness or paralysis is a possibility from the surgery. He said that he needs to discuss it with their neuro-surgeon and make sure that Kaiser would OK the procedure.
4) I had previously been told that it would be dangerous for me to do any more radiation, but apparently over the last 10 years things have changed. He said that I could try doing more radiation in combination with a chemo drug I did in the past, Avastin, which worked for me for a while, but then stopped working and my tumor grew again. He said that using Avastin with radiation has shown much better results than Avastin alone.
He meets on Thursdays with his colleagues to discuss individual cases, so he said that he will call me on Thursday so we can hopefully decide what direction to go in. I'm taking this as some kinda bad news, but bad news that I knew was coming eventually. This doctor, Dr. Prados, is so amazing. He is direct, no beating around the bush, but also encouraging and innovative and I know he will never give up on me. I always leave his office with a sense of optimism and today was no different. I know he will be honest with me if there ever comes a point when we don't have much to be optomistic about, but he certainly has not given me that feeling at all. I just feel like this is yet another hill to climb on this damn cancer roller coaster and I'm sorry that you all have had to hang with me on it for the last decade, but just know that I appreciate all of your support! In recognition of the last 10 years since I was diagnosed, I'm finally going to get my first tattoo on Wednesday... it will be the date I was diagnosed, January 8, 2002, then 10 slash marks (you know, 4 lines, with a 5th line thru them), to mark each year since. Then every year from now on I'll commemorate that day by getting another slash. I plan on leaving enough room for 50 or 60 slash marks :) I know its kinda morbid, but I think of it as a celebration since that was pretty much the worst day of my life and I've had so many more awesome days to celebrate since then. I never fully appreciated all of the amazing people in my life until that day and have been thankful for all of you since :)
I'll post a picture of the tattoo after I get it (if it turns out good, fingers crossed) and let you know what treatment we are going to take after I talk to Dr. Prados on Thursday. Hugs and kisses to everybody!
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