So Far, So Good :)

Ok, so it has been just over 24 hours since I took my first dose of the trial drug and I've had virtually no problems. I slept like a log last night (and most of the morning) and have felt fine all day. I told my mom today that I can kinda tell that I've taken something, but it's very non-specific. Almost like I have a very, very minor hangover. I felt like this a lot of the time that I was on Temodar, so I'm guessing I will have a similar experience with it. Other than that, not much else is going on here :) I had a lazy, lazy day...

Hip! Hip! Hooray!!!

I FINALLY got the call I had been waiting for yesterday! UCSF received a new portion of my tumor from Kaiser that was big enough to test, and it passed the RB test so I was approved to do the first study that I was REALLY hoping to get into :) My mom and I went up to SF today and picked up the pills and I took my first dose about 2 hours ago.

So here's the specifics: I'll be taking pills, at home, of the trial drug once a day for 3 weeks, then I get 1 week off to recover, so it is a 28 day cycle. I'll have an MRI, EKG and meeting with a doc after every 2 cycles. If the tumor either shows no growth or shrinks, I will continue on the treatment for 12 cycles, which can be extended to 24 cycles if I choose and it is still working. If the tumor grows, then the medication obviously isn't working and I will move on to the other trial which I am already approved for.

Right now I can kinda feel my stomach gurgling a little. I have some anti-nausea medicine I can take if that becomes an issue, but the nurse told me to try starting without it. This is a very similar feeling to what I felt when I used to take my Temodar pills, so I'm hoping that my side effects are similar as well. I tolerated Temodar really well and took it for several years. All I really had was some nausea, which the anti-nausea pills totally contained, and fatigue, but that didn't even set in for several months. The literature on this new drug says that nausea and fatigue are also it's most likely side effects. I am supposed to keep a journal of when I take it, how much I take and any side effects. Cross your fingers that I'm not yacking in a couple hours :) I'll let you know tomorrow if anything significant happens tonight.

I'm really relieved to finally be doing SOMETHING! My last treatment of Avastin was toward the end of November and I have had no other cancer-fighting treatments since! Basically, my tumor has been allowed to grow, unchecked, for nearly 8 weeks and, luckily, it has behaved very well :) It seems to have grown very little and has not ticked off my motor strip any further so I have had no new symptoms and no further paralysis or weakness. I first talked to the doctor at UCSF about getting enrolled in this trial on December 14th, so it took 5 weeks to git'erdone, but now I'm finally on a medication! It has been really frustrating, but I've been trying my best to not stress about it. My obsession, crocheting, has been a sanity saver! When I've got both hands busy and I'm thinking about the pattern, it just takes all my cares away :) Though my mom gets kinda annoyed when I ignore her because I'm counting stitches and will lose my place if I reply. Between that, reading, doctors appointments and visiting friends, my days tend to keep me much more entertained than I expected when I first moved to Fiddletown :)

Ok, it's late and my sleeping pill is finally starting to kick in. Wish me luck that I make it through the rest of the night... I'm going to go get a trash can to keep beside my bed... just in case!

STILL Waiting!!!

Uuuurrrrggggghhh! I'm so frustrated! Last Friday I had an MRI at UCSF and an appointment with an oncologist there to discuss me FINALLY starting a clinical trial. After a month of requesting it, they finally received a pathology slide from Kaiser, but there was too little tumor material on it for them to test it! Though UCSF has everything they need for me to start this trial, they NEED to test my tumor to see if it has some RB factor (or something like that). UCSF called Kaiser again to see if they had a larger sample and they said that yes, they do have more... WHY DIDN'T THEY SEND THAT IN THE FIRST PLACE??? They said they could get it to UCSF by this coming Friday... another week??? Why??? UPS can overnight it!!! Yesterday, I called the lady at Kaiser who shipped the first sample & left a message on her voicemail that this was extremely urgent and that my life could depend on her getting it to them as soon as possible and that it was unfortunate that I needed to request this over the Christmas, New Years and MLK holidays, but Friday is not good enough. She shipped it this morning and it should get to UCSF Wednesday morning :)

The lesson learned here: You MUST be your own advocate when it comes to your health! Trust your instincts, listen to your body & if it feels like someone isn't listening to you, keep calling around until someone does. I was just a number to this lady at Kaiser until I let her know that she could be a big part in extending my life.

So now, hopefully my tumor will have the RB factor that I need to be in the study and I could start, possibly as soon as the end of this week :) By the way, my MRI from Friday showed that my tumor may have grown slightly since my previous MRI on December 1. The oncologist compared it to the previous one and luckily there wasn't a real obvious growth. Since I still haven't had any new physical changes, she said she thinks we still have enough time to try to get me into the first trial.

Again, on a lighter note, I figured I'd share with you all what has been keeping me busy lately. Embracing my natural old lady tendencies, I've been making a lot of crocheted stuffed animals. I made some for my neices and nephew... here's a couple of them :)

Harley's Dancing Panda & Super Mason Monkey.

I made a white Jetta for Savannah with blingy pink hubcaps and headlights, but forgot to take a picture of it before I gave it to her.

I hope January has been treating you all well :) I'll let you know if I hear from UCSF and if I start on either of the trials.

Hugs & kisses!

Laurie

Happy Anniversary to My Tumor!

It's a strange anniversary to celebrate, but 9 years ago today I found out that I had a brain tumor. That day I started mentally planning my imminent death. Who would have thought that I would have been doing as well as I am 9 years later??? I really do think it is a cause for celebration :) I've had 9 more years to make memories and live life than I thought I would have. It's not exactly the life I envisioned as a kid, but it has been fulfilling nonetheless and I wouldn't trade a single day.

Mason turned 19 yesterday... OMG I'm getting old! Mom & I are going to visit tomorrow to give him his bday gifts :)

No new news to report since my last post except that, as of Friday, they still hadn't gotten my pathology slides. Apparently Kaiser thinks they will have it by Monday. I'm not holding my breath, but keep your fingers crossed for me anyway!

Cheers!
Laurie :)

Aaahhhh, back to real life :)

As much as I enjoy the holidays, all the festivities, family and food, the quiet of early January is intoxicating! I've been soooo relaxed (aka lazy) this week. I'm loving it :)

I've finally heard back from both Kaiser and UCSF about getting enrolled in a couple clinical trials. It was really looking like I wasn't going to be able to do the first trial, let's call it Trial A, because they needed to find my original pathology slide, from my 2002 biopsy, that has a bit of my tumor on it. For this trial, they need to stain the tumor cells with something to see if my tumor has something that would get me approved for the trial. Basically, around 85% of brain tumors have whatever "it" is, and they need to make sure mine has "it". So it appears that someone at Kaiser dropped the ball over the holidays and I don't think anyone was even looking for it until earlier this week. I'm told that they think they should have it by tomorrow & hopefully UCSF can get their hands on it and get it tested by mid next week.

I spoke with Dr. Prados at UCSF yesterday and he asked how I'm doing, if I've had any new symptoms since stopping my last chemotherapy over a month ago. He sounded encouraged that I haven't lost anymore movement, so decided that we should continue trying to get me into Trial A. If I had started declining, he would have had me start on Trial B, just to get me on some kind of treatment. Trial A is a phase 2 study meaning that dosing levels have been already been determined and they are now trying to determine how effective it is. Trial B is just a phase 1 trial, meaning that it is still not exactly known to be effective and they would be increasing dosage to find the maximum tolerable dose. I think phase 1 trials are a lot tougher on the body. If it turns out that Trial A dosen't help me, then I can still do Trial B.

Funny timing... I just got a call from a lady at UCSF to schedule an MRI for next Friday, the 14th :) Yay, finally stuff is happening!!!

On a less clinical note, my dad is still hard at work finishing the basement for my new little studio down there. He's hired the same contractor who built our house to finish the bathroom and put in a cast iron propane fireplace, but Dad is doing a lot of the work himself. He's been out in his mancave building shelves for the bathroom and the mini kitchen. He bought a really cool old buffet/hutch that he is going to put the bathroom sink in so it will become the vanity. He's ordered all of the fixtures and yesterday we went to pick out the fireplace. It's been like Christmas all over again because he's ordered almost everything online so we have UPS & Fedex dropping off stuff daily :) I can't wait for them to get started!

Hope you all are getting back into normal life too :) Cheers to having a routine again!

XOXO,
Laurie