Happy Halloween!!!
After making another 3 1/2 hour drive to San Francisco this past Monday, we weren't able to get anything finalized but we found out a little more about the trial I'm going to do. This is a phase 1 trial which means that right now, they are trying to find out the appropriate dose to give patients and the best way to administer it. At the beginning of the trial, they start out with a low dose & increase as they monitor any side-effects. Luckily for me, they are very close to the end of phase 1, meaning that I will be getting the highest amount of virus, given over the longest time rather than a small dose that might not have any effect on my tumor. Right now they are just adjusting the amount of steroid to be given with the virus.
Each time they make a change to the protocol, i.e, a dosing change or change to how they administer it, they call it a new amendment and have to get it approved by some board who oversees human trials to make sure they are following ethical practices. They just finished the 14th amendment and will be starting the 15th soon which I will be on. We do not know my surgery date yet, but it will be sometime after November 10th, probably either that week or the next.
In the meantime, I'm just going about life as usual :) Going to a pub for a Halloween Trivia night tonight!
You all have fun taking the kiddos out for trick-or-treating and getting into whatever trouble you big kids might find yourselves in!!!
Thursday, October 31, 2013
Saturday, October 26, 2013
Decisions, Decisions...
OMG! It has been such a long, emotional and frustrating week! However, I have finally made a decision about which treatment to do, so I am feeling somewhat more peaceful now. Here's how my week went and how I came to this agonizing decision...
On Wednesday, 10/23, my folks and I made the trek back to UCSF to meet with a neurosurgeon who works with my neuro-oncologist there. He told us more about the Tocagen trial and surgery involved in which he would inject a virus directly into my tumor. I would wait a few weeks for the virus to, hopefully, fully infect the tumor, then take a harmless anti-fungal drug that becomes chemotherapy when it comes in contact with the virus.
The surgery will be done while I am in an MRI machine so they can see, real time, where the drug is being injected. Apparently, when this trial began, they injected the virus in just one quick dose but found that it didn't infect the tumors very well. They have now started infusing the tumors over a longer period to try to ensure better penetration. If I have the surgery, they will infuse my tumor over 3 hours while checking on me every 10 minutes to make sure as much of my tumor is infected as possible. A major risk in having the surgery is developing more weakness on my left side due to swelling and the location of my tumor. However, the surgeon seems to think that, using steroids, the swelling can be kept to a minimum and any more weakness that I develop from the surgery may hopefully inprove over time as the area heals. They want 30 patients in the trial, 15 at UCSF and the other 15 at other institutions across the country. UCSF only has 1 more slot.
I had a long phone conversation with my oncologist Thursday night, trying to get some guidance from him to help make my decision. I had him on speaker so my parents could hear what he had to say and ask questions as well. We basically reviewed the options and he helped us look at the risks and benefits of each. He said that if I did another treatment and it didn't work and my tumor grew, the surgery option would likely be off the table. After getting off the phone, my folks and I nervously said which direction each of us were leaning and, luckily, we all had the same inclination... I'm going to do the surgery.
Given the time restraint and the fact that UCSF can only take 1 more patient on the trial was what pushed us over the edge. However, we were all thinking that this trial, while risky, seems very innovative and possibly ground breaking. Given the several different types of treatments I've done already and the fact that eventually they all stop working, unfortunately I live in reality and have had no hope that I will ever be cured. I've had amazing success thus far, way more than any of my doctors ever imagined, but seriously, I have brain cancer and eventually my lucky streak will come to an end. With this trial though, there is a slim chance that my tumor could actually shrink a little. So, while I am scared about the surgery, I'm also allowing myself to feel hopeful and even a little optomistic :) When I was diagnosed in 2002, this trial didn't exist. Every year that I survive is another year closer to finding a cure.
Another factor leading us to surgery is the fact that I can do any of the other treatments if it doesn't work. Hopefully it will and we won't need to make another difficult decision any time soon, but it sure is nice to have a 2nd, 3rd and 4th option!
I have an appointment on Monday 10/28 with my oncologist to sign paperwork and start talking about scheduling the surgery. I have to wait 3-4 weeks for my previous trial drug to leave my system and it has only been 2 weeks since my last dose so I'm thinking it will probably be the first week of November. I'll let you all know when it will be.
Ugh, heavy stuff, huh?!? I've been on an emotional roller coaster all week, but have felt a huge weight lifted since making this decision. Now back to normal life for a while... catching up on all my shows, trying to exercise and lose weight, crocheting like a mad woman... all my usual boring stuff :)
I'll let you all know what I find out in my appointment on Monday.
Big bear hugs!
Laurie
On Wednesday, 10/23, my folks and I made the trek back to UCSF to meet with a neurosurgeon who works with my neuro-oncologist there. He told us more about the Tocagen trial and surgery involved in which he would inject a virus directly into my tumor. I would wait a few weeks for the virus to, hopefully, fully infect the tumor, then take a harmless anti-fungal drug that becomes chemotherapy when it comes in contact with the virus.
The surgery will be done while I am in an MRI machine so they can see, real time, where the drug is being injected. Apparently, when this trial began, they injected the virus in just one quick dose but found that it didn't infect the tumors very well. They have now started infusing the tumors over a longer period to try to ensure better penetration. If I have the surgery, they will infuse my tumor over 3 hours while checking on me every 10 minutes to make sure as much of my tumor is infected as possible. A major risk in having the surgery is developing more weakness on my left side due to swelling and the location of my tumor. However, the surgeon seems to think that, using steroids, the swelling can be kept to a minimum and any more weakness that I develop from the surgery may hopefully inprove over time as the area heals. They want 30 patients in the trial, 15 at UCSF and the other 15 at other institutions across the country. UCSF only has 1 more slot.
I had a long phone conversation with my oncologist Thursday night, trying to get some guidance from him to help make my decision. I had him on speaker so my parents could hear what he had to say and ask questions as well. We basically reviewed the options and he helped us look at the risks and benefits of each. He said that if I did another treatment and it didn't work and my tumor grew, the surgery option would likely be off the table. After getting off the phone, my folks and I nervously said which direction each of us were leaning and, luckily, we all had the same inclination... I'm going to do the surgery.
Given the time restraint and the fact that UCSF can only take 1 more patient on the trial was what pushed us over the edge. However, we were all thinking that this trial, while risky, seems very innovative and possibly ground breaking. Given the several different types of treatments I've done already and the fact that eventually they all stop working, unfortunately I live in reality and have had no hope that I will ever be cured. I've had amazing success thus far, way more than any of my doctors ever imagined, but seriously, I have brain cancer and eventually my lucky streak will come to an end. With this trial though, there is a slim chance that my tumor could actually shrink a little. So, while I am scared about the surgery, I'm also allowing myself to feel hopeful and even a little optomistic :) When I was diagnosed in 2002, this trial didn't exist. Every year that I survive is another year closer to finding a cure.
Another factor leading us to surgery is the fact that I can do any of the other treatments if it doesn't work. Hopefully it will and we won't need to make another difficult decision any time soon, but it sure is nice to have a 2nd, 3rd and 4th option!
I have an appointment on Monday 10/28 with my oncologist to sign paperwork and start talking about scheduling the surgery. I have to wait 3-4 weeks for my previous trial drug to leave my system and it has only been 2 weeks since my last dose so I'm thinking it will probably be the first week of November. I'll let you all know when it will be.
Ugh, heavy stuff, huh?!? I've been on an emotional roller coaster all week, but have felt a huge weight lifted since making this decision. Now back to normal life for a while... catching up on all my shows, trying to exercise and lose weight, crocheting like a mad woman... all my usual boring stuff :)
I'll let you all know what I find out in my appointment on Monday.
Big bear hugs!
Laurie
Monday, October 21, 2013
All Good Things Can't Last
Well, unfortunately my run of unbelievable luck on the clinical trial at UCSF that I've been on for THREE years has run out :( I knew this day would come eventually, but it's still a bummer getting the news. Comparing the MRI that I had a couple weeks ago to one's in June and August, there is a small spot on my tumor that clearly shows slight growth. This was enough for my doctor at UCSF to determine that the experimental drug that I was on is no longer keeping my tumor stable which was enough for him to take me off of the trial. I still consider myself extremely lucky though, because I believe that I was the last person on the trial for nearly 2 years! For some reason, my tumor was more receptive to the medication than any others.
So now, once again, we are in the uncomfortable situation of choosing a new path of treatment. Fortunately, my doctor and his team have offered us at least 4 options and I think my family and I are close to deciding on one. Here are my layman's descriptions of our options:
1) Try some of the chemo drugs that I've already done in the past to see if they start working again since I haven't done them for so long.
2) Do 1-2 weeks of radiation, along with a chemo drug that I had in the past. This is an option that, 11 years ago when I first did radiation, I was told I would never be able to do again. I was told that they had given me all the radiation that my body could tolerate. Apparently they didn't expect me to live another decade and UCSF's radiation oncologist thinks that it has been long enough an interval now that I could do a little more. Last time I did radiation, I basically went into "remission" for several years :)
3) A UCSF clinical trial using nano-particles. This is a trial that I was approved for back when I was approved for the trial I just finished, so it has been ongoing for at 3 years which gives me a fair amount of confidnce in it. With this one, I would receive the trial chemotherapy by IV infusion at UCSF and spend 3 days in the hospital, I think for observation. Then I would return to UCSF for the treatment every 3 weeks, but would only need the hospital stay for my first infusion. The way I understand it, this drug is designed to find my tumor, then sort of "explode" a super dose of chemo into the tumor, hopefully having a bigger effect than standard chemotherapy.
4) A clinical trial sponsored by a company called Tocagen. In this trial, I would have surgery to inject a virus into my tumor, then wait 3-4 weeks for the virus to invade all of the tumor. I would then take an oral anti-fungal drug, already FDA approved and harmless to the rest of my body. However, when the drug meets the virus that has infected my tumor, it turns into a chemotherapy drug attacking only the tumor cells. This trial is really exciting, but there is some definite risk with the surgery due to the location of my tumor. Too much swelling could cause me to lose more motor function on the left side of my body. I have an appointment on Wednesday, 10/23 with UCSF's neurosurgeon to discuss the risks. Check out the following link to see more about the trial: http://www.tocagen.com/.
Right now, I'm leaning toward doing #3. Since it is a trial, nobody knows if it will be around in a year or two & since it's been going on for a few years, it must be showing some signs of hope. I still need to find out more about it though before I make a final decision like how many people are on the trial, what phase the trial is in and how effective it has been for those who have participated in it. It seems like a minimally invasive option that my doctor appears to favor.
Since #4 involves a touchy surgery, I'm a little less inclined to start with that one. Maybe keep it in our back pocket in case #3 doesn't work. It seems a little counter-intuitive that I wouldn't start with #1 and #2 because they are already FDA approved, but I can do those at any time. I'd rather start with something experimental and more advanced, that hasn't been around for decades and that could prove to be the magic bullet.
With the input of my doctors, family and friends, I will likely be making a decision by next week and starting treatment soon thereafter. I'll let you all know which way we're going and when treatment will start :)
As always, thank you to all of my family, friends, doctors, nurses and strangers who have shown their concern, compassion and unending support for me through this crazy ride! I truly love you all and you guys are the reason I keep going with a smile on :)
XOXO,
Laurie ;-)
So now, once again, we are in the uncomfortable situation of choosing a new path of treatment. Fortunately, my doctor and his team have offered us at least 4 options and I think my family and I are close to deciding on one. Here are my layman's descriptions of our options:
1) Try some of the chemo drugs that I've already done in the past to see if they start working again since I haven't done them for so long.
2) Do 1-2 weeks of radiation, along with a chemo drug that I had in the past. This is an option that, 11 years ago when I first did radiation, I was told I would never be able to do again. I was told that they had given me all the radiation that my body could tolerate. Apparently they didn't expect me to live another decade and UCSF's radiation oncologist thinks that it has been long enough an interval now that I could do a little more. Last time I did radiation, I basically went into "remission" for several years :)
3) A UCSF clinical trial using nano-particles. This is a trial that I was approved for back when I was approved for the trial I just finished, so it has been ongoing for at 3 years which gives me a fair amount of confidnce in it. With this one, I would receive the trial chemotherapy by IV infusion at UCSF and spend 3 days in the hospital, I think for observation. Then I would return to UCSF for the treatment every 3 weeks, but would only need the hospital stay for my first infusion. The way I understand it, this drug is designed to find my tumor, then sort of "explode" a super dose of chemo into the tumor, hopefully having a bigger effect than standard chemotherapy.
4) A clinical trial sponsored by a company called Tocagen. In this trial, I would have surgery to inject a virus into my tumor, then wait 3-4 weeks for the virus to invade all of the tumor. I would then take an oral anti-fungal drug, already FDA approved and harmless to the rest of my body. However, when the drug meets the virus that has infected my tumor, it turns into a chemotherapy drug attacking only the tumor cells. This trial is really exciting, but there is some definite risk with the surgery due to the location of my tumor. Too much swelling could cause me to lose more motor function on the left side of my body. I have an appointment on Wednesday, 10/23 with UCSF's neurosurgeon to discuss the risks. Check out the following link to see more about the trial: http://www.tocagen.com/.
Right now, I'm leaning toward doing #3. Since it is a trial, nobody knows if it will be around in a year or two & since it's been going on for a few years, it must be showing some signs of hope. I still need to find out more about it though before I make a final decision like how many people are on the trial, what phase the trial is in and how effective it has been for those who have participated in it. It seems like a minimally invasive option that my doctor appears to favor.
Since #4 involves a touchy surgery, I'm a little less inclined to start with that one. Maybe keep it in our back pocket in case #3 doesn't work. It seems a little counter-intuitive that I wouldn't start with #1 and #2 because they are already FDA approved, but I can do those at any time. I'd rather start with something experimental and more advanced, that hasn't been around for decades and that could prove to be the magic bullet.
With the input of my doctors, family and friends, I will likely be making a decision by next week and starting treatment soon thereafter. I'll let you all know which way we're going and when treatment will start :)
As always, thank you to all of my family, friends, doctors, nurses and strangers who have shown their concern, compassion and unending support for me through this crazy ride! I truly love you all and you guys are the reason I keep going with a smile on :)
XOXO,
Laurie ;-)
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