Living with GBM - Medical Updates

Update 3/15/16
I have finished my first two cycles of this new clinical trial. I I don't think I've signed any papers that say what I can and can't say about this treatment, so I'm going to give you some details. (Let's see if I receive a cease and desist letter."

The clinical trial is called ABT 414. I am the phase 2 of this trial. The Phase 1 had some impressive positive outcomes, and I was/am eligible, which was not so easy since there were two genetic markers I had to have in order to participate. It's one of the trials that is using a "drug cocktail" approach. It's six cycles that involves 28 days. Day 1 and 15 are Infusion Days of the drug (ABT414), and Day 1 also is the first day of a five day cycle of Temodar. Once that cycle is complete, I start over with a new cycle. There are a lot of fasting blood draws involved, too. After six cycles like that, if my MRI's stay stable, they will drop the Temodar and I'll just have the Infusions.

My first MRI with this trial will be 4/4/16. That will determine "What's next..."

Most Current Update 3/3/16
Short Story? 
Unfortunately: Recurrence
Wow! It's been a LONG TIME since I've written here! I guess mostly it was like the same thing for a long time. I finished 12 cycles of Temodar after my 30 days of Initial Treatment (Temodar & Radiation) I had stable MRI's every other month - and it was GREAT! The oncologist decided to go ahead with Temodar cycles #6 - 12,  after six (current protocol) The last MRI after cycle #12 was reviewed by the UCSF Tumor Board and the consensus was my secondary site was showing evidence of progression of the disease, not just inflammation from the radiation treatment. The primary site is seen as stable, so I guess that's the good news? The bad news is that the secondary site is on my right temporal lobe in an area that is inoperable, and they would not consider more radiation treatment after all the radiation it has received during the Initial Treatment.

My Neuro-oncologist at UCSF (and whole medical team) presented five options that they thought were appropriate with my case. My choices:
Two "standard of care" chemotherapies meaning two other Chemotherapy drugs that are already approved and used on patients with GBM that can not tolerate Temodar well. I guess I'm considered one of the "lucky" ones that my body has been responsive and tolerating the Temodar. The average GBM patient survives 15 months and this month will be 18 months survival, so it was working a long time! I say that's ""lucky"!

I started this page in one of my journals so I could keep track easily without making my brain work hard on the math each time. My surgey/DX was September 24, 2014.

The three other options were clinical trials. Two involved using Avastin as part of the treatment. They have had some positive outcomes as a result - the problem is that once you start using Avastin, you are ineligible for many new clinical trials that are out there now or will be available in the future. We decided on a third possible clinical trial that involves Temodar and in Phase 2 with some very positive outcomes in the Phase 1.

I've just started the protocol for this clinical trial. I'll know more about the effect after my MRI in the first week of April 2016. Stay tuned....
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Update 5/4/15
It's been too long since an update! I have two MRI's since then - one in March and the latest one in May. Both were declared "stable", my new favorite word! Again, we've had the radiologist and oncologist in Los Gatos review the films and then the neuro-oncologist from UCSF review them, too. We had a phone consultation with her yesterday. They all seemed to be very pleased with the results. No change from the baseline MRI, and no real inflammation.

I have been off the steroids for quite a while, which helps a lot with my sleeping. My legs in particular are really weak in comparison to B.C., but I'm still walking nearly every day. The neuro-oncologist said that my strength will come back in time without the Decadron. The radiation affects that, too. I try to get my 3 mile walk up Communications Hill every day, but I listen to my body.

The April chemo cycle really kicked my ass so I had to take some time off to recover. February, March, and April, my chemo dosage was increased to 380 mg (the "normal dose" for this part of treatment).  It didn't really bother me so much the first two months, but April, I had just gotten back from a two week cruise to France, and I think the jetlag and time change really threw me for a loop. I felt really sick (I never really feel that nauseous) and on day 5, I think I pretty much slept for 24 hours straight.

It occurred to me that maybe my weight loss since January had been significant enough to adjust my dosage. (I have lost 30+ pounds since the start of chemo treatment (plus 10 more from the surgery until the start of radiology). The doctor from UCSF confirmed my thinking, and we will discuss this with the oncologist on Friday at my appointment. Interestingly, my chemo dosage is cumulative - how much I take total during the five days, so we'll probably have to take more on one day than others to fix the discrepancy. This week, I feel like I'm really starting to recover and get back in the groove. I still feel like I'm about 80-85% of "Old June" - for example, I had to sit down for a little bit while chopping a bunch of vegetables for dinner the other day. Granted, it was a LOT of vegetables!

I started back at speech therapy last week - I have an appointment today. I have less problem with pronunciation than "prosody" - I'm not monotone, but sometimes I feel like I'm somewhat halting or I pause in a weird place while talking. Sometimes my talking/writing gets muddled and I have to go back and start from the beginning. I can usually sort things out with taking a deep breath and slowing down. I'm hoping to make progress with that during therapy and any "homework" I can do. I also find myself searching for the right word - and my brain will come with almost but not quite: like "unless/until". I am aware of the mistake and correct it, but it can be frustrating because it interferes with the flow of a conversation.

Obviously, I'm in no position to be teaching at this time, but I can't go back to work anyway until I've stopped with the chemo treatments. It's too risky with all the germs that the kids carry. I'm doing a little work for Steven for the winery, but mostly, I am concentrating on trying to do whatever I can to live as long as possible. If anyone is interested on what I'm doing, I plan to create a new page that will outline some of my routines that I think are helping keep me healthy...aside from this annoying "brain cancer" thing...

My next chemo cycle starts Friday. Then one more in June. That will the 6th. then in July, I'll have another MRI and start talking about the next "What Next?"


Update 1/27/15
I had an MRI on 1/9/15.  It was my first MRI post-initial treatment. They warned me that a lot of times this first one is very ambiguous and really more of a baseline. Both my local oncologist and radiologist have seen the results, and we've met with them. So, the good news is that it didn't show any growth. The cavity where the tumor was has shrunk - which could be the brain is still inflamed from the treatment (radiation) or it's just settling in with the new space. We need to bring the same reports up to UCSF for the neuro-oncologist to review. Hopefully, that will happen within the next couple of weeks.

In the meantime, I have started my follow-up treatment of Temodar: 5 days on/23 days off. The first cycle was 280 mg. - which is the twice the dosage that I had with the radiation. The next cycle will begin in February, and they will up the dosage to 380 mg.

I have noticed a little more fatigue. They are still tapering me off the steroids from the radiation, so maybe that is counter-acting the fatigue a bit, too? I'm almost done with tapering, though. 2mg. a day this week and then 1 mg. a day starting Friday. I haven't noticed any serious nausea, but I also have kind of an "iron stomach" so I'm not prone to nausea. We'll see with the new, higher dosage, though!

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Glioblastoma Multiforme or GBM
So, some of you might be thinking: Sweet! June's almost done with her treatment, and then the worst is behind her. Right? Brain cancer is just a form of cancer, right? You've had relatives or friends who've been diagnosed with some form of cancer. They had surgery, had some shitty, shitty times with chemotherapy and/or radiation and moved on with their lives. <high fives for all of them!!!> Woooooot!

I know not all of you are thinking that - because you didn't listen the MANY times I have told you not to "Google that Shit!", and you went ahead and googled  "GBM" or "glioblastoma multiforme" anyway. You naughty, naughty kiddies! I knew you were never to be trusted.

But, I wanted to get something straight. For you, but also for me.
I have only 2 more weeks of my initial treatments (chemo/radiation), and I've started thinking about the...."then what???" (This is about the Medical Part.) So, confession time: I started to google GBM again.

And I felt like I needed to tell it like it is because some of the people in my life are still floating down that River DENIAL - or are too scared to google that shit and find out the answers. I promise I'll be as gentle as I can and hold your hand the whole time.

You know you can trust me!

 WHAT I'VE LEARNED SO FAR: 
 First of all...
1) I just recently found out that if you google "GBM", (at least during the holidays), you might just get a link to a Gingerbread Man website. (This is not a joke...although I thought it was pretty damn funny.) If you're looking for a recipe on how to make the perfect gingerbread men, you are luck! Stop there! You're golden! <-- not tested/approved, but it's from the Food Network, so I'm guessing it's good enough.
 Side note: now, I've totally gone off the rails, because every time I think or type GBM, I imagine gingerbread men inhabiting my brain. They are tasty, but it's still not a good place for them to be.

Another problem you can have with googling GBM is:
2) You could hit on the super clinical, dry, medical websites that have zero bedside manner (I bet they were all written by Dr. Dick, my... no longer my neurologist, since he has so much spare time. Hint: He saves time by never looking his patients in the eyes and cutting them off whenever they try to speak.) These websites are the kind that made me cry and shut down a little in the beginning of November. [Here's the link if you want to jump in the Tardis in case you missed that little breakdown: "Warning: Absolutely No Unicorns or Rainbows Contained in this Post (sort of)"
[Helpful tip for next time: add "Long Term Survivor" to your search engine.]

THE NO BULLSHIT ANSWER TO THE MEDICAL "NOW WHAT?" OF GBM:
To begin with, you are right - GBM is a form of cancer. And in many respects, cancer is cancer is cancer. A person who has been told that they have any form of cancer has been changed irrevocably. They have morphed into a Ninja Warrior! Woot! How cool is that!? But every cancer patient/survivor is different because...well, we are all so exquisitely different and complex. Which is also super cool, no?!

But anyone who has been told that he/she has cancer wants to hear the magic number: the survival rates. And again, some cancers are different than others. I've actually heard people say, "If you have to get a cancer, that's not a bad one to get..."

But people will never, EVER say that about GBM. In fact, if you mention GBM, people who know anything about cancer know that it's one of the deadliest forms of cancer you can get. The survival rates are ...well, shit. That's just the best way to describe them. But since we all know that I'm a #MFBCFNW and "Outlier" is my middle name, let's get beyond that deadly nonsense and cut to the chase...

So, "Now What?"Medically (for me)
GBM is not curable - - at this time. Treatments are getting better and better, and the protocol I've been given is the best that there is out there.  But right now, we're not talking to the doctor about what we're going to do after I'm cured in two weeks. (I still think I want a medal of some kind to hang up with my marathon ones, but this isn't a finish line. It's more of a benchmark or mile marker.)

After my initial treatment is over, I will start a new routine: I will get an MRI every couple months and I will be on chemo (Temodar) 5 days of the month, and off the rest of the month.
And we watch. and we wait. and as long as things look okay and the GBM is not showing signs of growth, we keep doing that.

But this is the thing: it (almost) always grows back. Like, you have a better chance of seeing a cat riding a unicorn with a rainbow in the background than treating GBM once and not having a recurrence. (That's why it has a reputation as one the most deadly and aggressive cancers.)

So, let's just read the no bullshit, fine print for a minute, shall we? Let's hop off the canoe in the River of Denial and talk some straight shit: For right now, living with GBM most likely includes additional surgeries, and new medications, and adaptations to what life brings our way...

I may have longer periods of time with a "reprieve" from major medical involvement or shorter periods of time between medical interventions/treatments...

Sooooo.... WHAT ARE YOU SAYING, JUNE?

I don't have a lot of answers because I have no idea what the future holds for me, but what I do have is a lot of HOPE. Steven and I are doing whatever is in our control to reach our goal. And that's all we can do.


I am connected now with a wonderful team of doctors at UCSF which is one of the premier facilities studying Neuro-Oncology in the world. The medical communities are running numerous trials all the time, and they are making new discoveries, too. In fact, our current protocol (temodar/radiation) is one of the newest hopes for people with GBM. And there are additional facilities all across the world working on this same disease.  Believe me, we will go to the ends of the earth, looking for solutions.

We are exploring and implementing ways to nourish my body to keep it as healthy as possible. We exercise daily.

We reach out and cling to the support, love, and encouragement of our amazing support system.

Also, I've found some wonderful, inspirational people out there on the interwebs that are living with GBM . There aren't a lot of them (see dry, statistical bullshit for more details), but it gives me such hope! And of course I want to be one of those peeps in the future, too! 

My goal right now is for me to be someone living with GBM.
And why couldn't I be? Nobody has told me that it's impossible. And if they ever do, fuck 'em!

P.S. I am in the process of creating a list of Inspirational Blogs of other people living with GBM (in the lower right-hand corner of my blog page), but please check The BrainChancery.  He's far more zen-like then me and less "Raaaawwwwrrr!", but he's 2-1/2 years into this process, too. And he RAN to the hospital for his 3rd brain surgery. I think that's some badass, Ninja Warrior Mother Fuckery!