A year and a half?!?

Ok, I think it is a well established fact that I am a horrible blogger. It's been a year and a half since my last post! When I think about it though, there was a good reason for the lack of updates... not much happened in terms of my health in that time :) 


If you read my last post from Nov, 2013, I mentioned that we were thinking about trying a chemo called CCNU. I did, in fact, do 3 rounds of CCNU, between Nov, 2013 and Feb, 2014. After my Feb dose, my tumor had been stable for a while and my doctors thought I should hold off doing more chemo because my blood counts were really low and I was experiencing MAJOR fatigue. We decided to just monitor it with MRI's. Luckily, it remained stable for a year and we didn't see growth on an MRI until Feb, 2015. 


The last few months have been pretty crazy trying to figure out what treatment to do to stop any further growth. It started with my Kaiser oncologist, Dr. Grennan, introducing us to a new member of Kaiser's oncology team, Dr. Lallana, a neuro oncologist, specializing in brain tumors. At our first meeting, Dr. Lallana suggested that surgery on my tumor might be an option now, after we had been told for 13 years that my tumor was inoperable. About a year earlier a neuro surgeon at UCSF had done a computer simulation of surgery on my tumor and he thought that they wouldn't be able to remove enough tumor to offset the risks involved. So naturally we were really skeptical of Dr. Lallana's seemingly rogue, even dangerous suggestion. However, after some urging, he talked us into meeting with Dr. Jian, a neuro surgeon at Kaiser, and thank goodness that we did!

My parents and I found Dr. Jian to be a straight-shooter who had perfectly reasonable answers to all of our questions (and we had a lot of them!). He went into great detail about how he would perform the surgery and it was truly fascinating. 

Prior to meeting with him in March, I had done a functional MRI where I was asked to move my hands and do some cognitive exercises where I would look at a screen and have to think of the word that would finish a sentence or think of as many words as I could that start with a particular letter. It was pretty crazy because they were able to see where in my brain these functions take place to give Dr. Jian an idea of where he could safely cut. My tumor straddles my right frontal and parietal lobes, about even with my right ear, I think roughly 1-2 centimeters from the top of my head and it backs up to the center of my brain. He showed us a purple arc that went around my tumor, out toward my ear, that indicated where my arm function was. He said that given this information, he would go down, between my right and left hemispheres and remove tumor from that direction, cutting from the center of my brain out toward my ear, to avoid the area that controls my arm movement. He would have the anaesthesiologist put me fully under while they prepped me and he opened my cranium (creepy, right?!?), then wake me up to a "twilight" sleep where I'd be really groggy and wouldn't feel any pain in my head, but could talk to them and answer questions. He would use an electrode to stimulate different areas around my tumor and ask if I felt any sensations in my arm or just ask me questions to make sure I could still understand him and talk. This way, he'd able able to "map" out where it was safe to cut before actually cutting. He told us that technically, no tumor is "inoperable", it's just a matter of how much risk you are willing to take. I told him that I would want to be able to walk out of the hospital and in basically the same cognitive state that I entered it. He thought that was a reasonable request and said that he would just close me up if he didn't think he could safely deliver that.

It was nerve-wracking waiting for surgery to be scheduled, but they had to coordinate 2 neuro surgeons, an anaesthesiologist, an operating room and a bunch of nurses for an entire day so it took a couple weeks before we knew my surgery date. In the end, I had surgery on May 7th. It was about 8 hours long and apparently there were 11 people in the OR! I was the first into surgery that day and the last out. My mom said Dr. Jian called them into the "quiet room" after surgery and she was sure he was going to tell them that I didn't make it, but instead he told them he estimated that he had removed 80%-90% of the tumor and that I was in recovery and doing well :) I was discharged on the 10th and, true to his word, I was walking around the hospital just a couple days after surgery! 



Harley, Dena, me and Mom 2 days after surgery

There has always been some controversy about what type of tumor I have. After my original biopsy in 2002, using a Stanford pathologist, Kaiser told me I had an oligodendroglioma (I know, quite a mouthful). This type of tumor tends to be slow-growing and, while it's still a brain tumor, it responds well to chemotherapy and radiation. However, UC San Francisco looked at the pathology as well and thought it was a grade IV glioblastoma, basically the nuclear bomb of brain tumors. Over the years, the doctors have treated me as though it is the more aggressive type of tumor, but, as it turns out, pathology on the tumor that was removed confirmed that it is a grade III oligodendroglioma. This explains why I've responded so well to the treatments I've done and why I am still alive.

Way beyond my wildest expectations, I have regained some of the strength I lost in my left leg 5 years ago!!! I have started doing physical therapy and am still nowhere near walking normally, but I can now walk cautiously without wearing my brace and using my cane. I seem to have a little more weakness in my left arm than before surgery, but that could even diminish as swelling from surgery goes down and I do my physical therapy exercises.

We did have a little scare a couple days after I got home. Mom had a friend over for lunch and my dad had a couple friends over later that afternoon and while they were here, I started feeling weird and confused. It occurred to me that it felt like one of the seizures I have had occasionally over the years, but, having just had brain surgery, I was scared that it might be some sort of complication or a stroke or something worse than a seizure. We went to the emergency room and luckily, they ruled out anything bad and it turns out it was just a seizure, apparently pretty common after brain surgery, but nobody had warned us. I continued having about 1 seizure a day for a few days, but forcing myself to rest more and increasing my seizure medication has taken care of that and I've been seizure free for a couple weeks now :)

I am now rocking a bald head and kind of digging it. I look like an extra in the new Mad Max movie! Plus my showering and primping times are about half of what they used to be :)


Mom shaving my remaining "comb over"

Bye bye hair

 

G.I. Laurie?

Or Franken Laurie?
 

Today we had an appointment with a radiation oncologist, Dr. Nguyen. Prior to surgery, she had said that doing radiation again was possibly a good option to get the remaining tumor that the surgeon was unable to remove. This was exciting news for us because we had always been told that doing radiation again would never be an option. We were told, when I did it in 2002, that I had done as much as my brain could take in my lifetime. However, having a brain tumor, I don't think anyone expected my lifetime to be 13 more years and my doctors now thought any damage done from the initial radiation would have healed so re-irradiating might be possible. Today though, the radiation oncologist said that after getting all of the information from my earlier radiation, apparently I was given a higher dose than she had expected and the chances of side effects are higher than what she originally thought. I had a CT scan today and she is going to try to "map" a radiation plan to see if she can administer more radiation relatively safely.  

Although it feels like it's been a long, slow recovery, it hasn't even been 4 weeks yet and I'm feeling pretty close to my pre-operation energy level. I have to rest and I take naps fairly regularly, but every day my required down time is getting shorter and my stamina is increasing. If I do end up doing more radiation, I can expect that to really zap my energy again, but this surgery and radiation could potentially give me several more years, so I can handle a few weeks of fatigue. My surgeon even said that if it grows significantly again, he could go in and remove more! Every year they've kept me alive is another year that they're coming up with new, innovative ways to treat cancer and I plan on fighting this thing with everything I've got!

New Treatment Plan :)

Hi Everyone!

We've had a bunch of up and downs over the last couple weeks regarding my treatment so I want to give you all an update on what's been going on. Here's a little summary...

 

On Oct 23rd, we met with the neuro surgeon at UCSF and he seemed to think that the trial in which I would have surgery with a virus being directly injected into my tumor was a good option for me. We planned for me to go to UCSF today to sign all of the consent forms and surgery was going to be scheduled for this Thursday, Nov 14th. However, last Friday, Nov 8th, I received an email from my neuro oncologist, Dr. Prados, saying that the surgeon and his team did a simulation of the surgery using my last MRI and a computer program that allows them to practice the surgery before they actually do any cutting, and they realized that they would not be able to infect my tumor with enough of the virus to make the procedure very effective. Apparently, due to the size, shape and location of my tumor, the risks/rewards were just not in my favor.

 

This news was really disappointing because we had really struggled to make the decision to go forward with the surgery and now it wasn't an option. My mom and I went back to UCSF today to discuss our other options again with Dr. Prados and we've come up with a new plan of attack that we feel very comfortable with. If you read my blog and remember Option 3, the nano particle treatment, Dr. Prados talked to us some more about that trial and it seems like that treatment plan isn't ideal either. He said that the results from the trial haven't been very impressive and he seemed very reluctant to go that route.

 

We've decided to start out trying an FDA approved chemo called CCNU. I did this chemo when I was first diagnosed and, if I remember correctly, it had some good results for a short while. It has very few side effects, mostly just fatigue and lowered blood counts, so I should tolerate it very well. It is administered in a single dose every 6 weeks for 6-8 weeks with MRI's before each new round to make sure it is still working. After those 6-8 weeks or if an MRI shows my tumor growing, I will do radiation in combination with a chemo drug called Avastin. In 2002, I did 6 weeks of radiation and was told I would never be able to do radiation again, that I had done all that my body could handle. Apparently they didn't expect me to live another 11 years and they now think I can handle another 2 weeks of it :) The last time I did radiation, my tumor did not grow again for 3-4 years, so this definitely gives us some optomism. Another good thing about this decision is that I can do all of this at our Kaiser in Sacramento and won't have to make the 3 1/2 hour trek to SF for treatment. We're a little sad though because we've gotten to know Dr. Prados and all of the nurses at UCSF pretty well over the years and now we won't get to see them regularly. However, if all of the above fails to work, I've got my awesome team there ready to come up with a new game plan :)

 

Big hugs, health and happiness to you all!

Laurie

 

 

 

Ok, we've got a surgery date... hopefully...

Man, this waiting is killing me!  I don't feel like I can make plans more than a couple days in advance because I don't know what the next few weeks hold for me.  However, my waiting may be over :)

I received a call from my oncologist at UCSF tonight saying that they are trying to schedule my surgery for next Thursday, 11/14!  A bunch of stuff has to happen before then though, so it's not set in stone just yet.  Tomorrow, I have to get a ton of labs done at Kaiser in Sacramento as part of the trial.  Then next Tuesday, 11/12, the human experimentation committee will meet in the morning to hopefully approve the next amendment in the trial.  If that happens, then I have to go to UCSF that afternoon to sign consent forms, all kinds of paperwork has to go back and forth between UCSF and Tocagen, the company sponsoring the trial, and if all goes well, I will have surgery on Thursday, yikes!

In a way it's a relief to have a date set, but it's still brain surgery, so I wouldn't say I'm exactly relieved.  When I had my original biopsy in 2002, I had to fill out an advance healthcare directive specifying exactly what extreme measures I want taken in case all doesn't go well with the surgery and who I want to make decisions for me.  I have to update that and create a will before surgery, so I'm thinking this isn't going to be a very fun weekend.  Luckily (I think???), I've had a lot of time to think about these things, now it's just a matter of finally doing it.  I suppose it's something everybody should do, but nobody wants to, kinda like a colonoscopy :)

Anyway, that's the news for now.  I'll blog again if I hear anything else and will try to check in at least one more time to let you all know if the surgery is a go. 

All my nervously excited love!!!
Laurie             

No surgery date yet...

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!!!

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

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 ;-)

The Portland Brain Tumor Walk is Coming Up :)

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!