New Trial!

Ok folks, I apologize for the long time between posts.  The past couple months have been a bit crazy but I think things are finally settling out.

First, the good news: I have begun a new immunotherapy trial!!!

Pretty excited about this.  It is very similar to a trial that I was trying to get on but had closed too soon.  However it is down in Los Angeles so I will be traveling down South every two weeks for an unforeseeable amount of time.  It is possible to transfer treatment to Portland but I don't know the timeline of that just yet.  Of course to get on a trial you need progressive disease.  My scans showed only a small amount of growth but enough to make me eligible.  Luckily no new spread of disease.

The Phase 1 trial scene is crazy.  I was flying up and down the coast to get my name on as many lists as possible and even when you sign consent nothing is guaranteed.  Today was the start of treatment so I can finally breathe a sigh of relief.  I am pretty excited about this new treatment as it targets the PD-L1 protein and has shown very good results for bladder cancer.

Here's a YouTube link on PDL1

Some Results from the PD-L1 trial by Genentech (not the exact drug I am on)

Roller Coasters

Although a blast at Amusement Parks, roller coasters in real life can lose their appeal.

I found out over a week ago that the fast filling immunotherapy trial has officially closed.  Never had a chance of making it into the trial due to the timing of my treatments.  As frustrating as this is it makes me even more frustrated of why I was kicked off the last trial.  As a scientist I understand the reasonings of how they are conducting these trials.  As a person, it is difficult to comprehend and arguably inhumane.  To be told on one hand you have a terminal disease and know that there is a possible drug existing to cure it, but you can't have it, is a bit cruel.

Scans are next week so I am really hoping that things are still stable or shrinking.  Provided regressive disease won't put me on the list for other clinical trials (we have a few more leads) maybe a break from treatment will be good.

On the plus side, physically I am doing well.  I even took a trip last week to hang out with my little sister and her husband over in Oahu.  Snorkeling, paddle boarding, and reading on the beach with a drink in hand can help calm the mind.  At one point I was out on the paddle board near Waikiki with rainbows over head and turtles in the water.  If that doesn't put a smile on your face I don't know what will.

Life is Good

Last week was rough...

For those of you who read last week's post you know I was in a bit of mourning early last Wednesday.  Well it turned out that the rest of the day was also a bit gloomy.  I had my blood tested that Tuesday to determine if my Lipase had dropped back to a normal range.  This test takes time and so I do it the day before my chemo.  My clinical trial coordinator contacted me Wednesday morning letting me know that I was 10 points out of range and that I needed to get tested right away to see if it had dropped in 12 hours (possible, but pushing things).  I rushed down to the UW hospital to do blood work and wait.  Not an easy thing to do when you know that the trial that has been working for you is possibly going to drop you from testing and also struggling with the loss of a good friend.  Luckily my sister Kendra was able to meet up with me for coffee and a stroll along Alki beach.  We talked and reflected on Mike as I tried not to check my email every five minutes for a message saying that my blood work was good.  That email never came.

Later in the day at my doctor appointment I was informed what I feared, that my blood work had made me ineligible for the 4th week in a row, disqualifying me from further treatment on the trial.  Times like these are tough, knowing that you have no control over the happenings crashing down around you.  I have learned to let go and not reach for the unattainable reins.  This doesn't change the hurt but it does help soothe the anger and confusion and self loathing that don't help.  Phase one trials of drugs are strictly regulated and so there was no negotiation of staying on the trial or getting the drug otherwise.

Of course my team always has a plan.  In fact, this may even be a good thing.  Although I was responding well to that trial drug, it and others like it have never shown what they call durable or long lasting results.  It is possible that the drug had worked for me as long as it was going to.  Getting off of this trial can make me eligible for others, like the immunotherapy trial that we had been eyeing since my last recurrence.  It opened in late July with hopes of filling in about 18 months.  Turns out it is on pace to close in November!  At that rate, me staying on the last trial for two more months it would close and I may never have the opportunity to try the drug.  This way I get a few weeks off with no poking or prodding and will return in late October for another scan.  Based on those results we will coordinate our next plan of attack.  Curiously it places me in another catch 22: if it grows I can get onto the new trial, if it continues to shrink Hooray! but no trial eligibility.  So I am almost hoping the stupid tumor has a tiny bit of growth as this immunotherapy drug has shown very good durable results.  Honestly I am not sure what to hope for.  In the meantime I am looking to relax and recharge from the physical and emotional roller coaster of the past few weeks.

For those of you who knew Mike, his good friend Craig had some excellent words to say about him that were posted on Mike's blog.  Mike's memorial is Saturday, September 27th 2-5pm at Elephant’s Delicatessen, The Corbett Room, 5221 Corbett Avenue, SW Portland, OR.

Goodbye good friend

Today my good friend Mike Ferlan finished his battle with cancer.  Although it may have taken him it did not prevent him from having an amazing life.

Mike was a fellow coworker at HP and we became friends over board games and working out.  He eventually convinced me to train for a triathlon in which I kicked his butt to his disdain (Mike is highly competitive).  Little did I know our friendship would grow to an undesirable kinship.  My first cancer scare was in December of 2010.  We seemed to catch it early and didn't see it again for nearly two years.  Mike was supportive at the time but neither of us knew that he would be joining ranks in the fight for your life against cancer.  I distinctly remembering hearing the news of Mike's crazy trip to a Chinese hospital in the middle of the night and later the news of his prognosis, 16 months.  I wept and cursed and was confused.  Mike had just completed his first Iron Man less than a year before this so how in the hell does a non-smoker have stage 4 lung cancer?!  Mike, an optimist to a fault, looked at this challenge straight in the face and said "Life is Good".  I had a surprise awaiting me as well that fall, stage 4 bladder cancer, fuck.  So Mike and I became chemo buddies.  Sharing our horror stories of Cisplatin but also supporting each other through it all.  We were able to empathize with the struggle, the emotions, the fears, and the hope.  I'd like to think we both gained some clarity as well and tried to focus on what was important in our lives.

Between Mike's treatments he set out to do the things he loved in life.  Hell I think his last two years on this rock were some of his best.  Scuba diving in the Galapagos, traveling through Italy, continuing and improving his artwork, things people take a lifetime to do.  He took those 16 months and stretched them out to 2+ years filled with family and friends and adventure.

I said earlier he finished his battle because I do not believe he lost.  He may not have defeated cancer but it did not defeat him.  Leave it to Mike to push a draw when the odds are stacked against him.

On top of Silver Star Mountain, January 2014

Link to Mike's Blog

More Good Scans!!

So last week was scan week (two more months gone by?!).  After the hiccup with the blockage and missing a treatment I wasn't so sure what to expect but hoping for the best.  Good news is that the node continues to shrink.  Not as drastically as last time but still a significant amount.  However, my blood work was not too great.  Turns out my Lipase was over double the amount that they are allowed to administer drug.  The docs aren't concerned on my well being and are certain it is due to my body still recovering from surgery.  Tricky part is that there isn't much I can do to bring the number down.  We will try again this Wednesday.  I am thinking low lipase thoughts, because if the numbers aren't right this week it will be four weeks off drug and the clinical trial sponsor won't be too happy about that...

Back Home

Made it out of the hospital last night and oh does it feel good to shower and sleep in your own bed! Of course as the prerequisite to being discharged I had to earn the shirt shown below. 

Have a great holiday weekend! I think I am going to keep it low key. 

Obstructed Bowel :-(

A very common issue of major abdominal surgery is getting a bowel obstruction. Turns out after over a year it can still happen. Last Thursday the scar tissue from my surgery decided to put a stranglehold on my small bowel. This results in horrible cramps and abdominal pain. The wonderful girlfriend took me to Providence Hospital in Portland where I got admitted Thursday night (the poor girl gets to take me to the hospital too often and only at night, no sleep for us). A CT scan showed that it was just scar tissue and unlikely due to any new cancer growth or a side effect of treatment. Good news in the scheme of things. If we were lucky this would unravel itself in a few days. Turns out I am not that lucky and so went under the knife on Sunday. 

Surgery was quick at around an hour with no complications. My surgeon was conservative and straightforward with me which I appreciated. He also had a very dry sense of humor that took some time to get used to. I will likely be in the hospital for another 5-7 days until the bowels wake back up. Chemo this week will be postponed. Not sure how it will affect the rest of my schedule. Hopefully we just skip this week and start over with the next round. 

On other good news the CT scan did not show an enlarged lymph node (granted this was without contrast). But maybe that sucker is shrunk even more!

Little Sister Successfully Married!

I officiated my little sisters wedding and things couldn't have gone better. We had about 180 guests at my parents house in the Yakima Valley on a hot summer day. Lots of prep work and improvement projects were done for the event and it really transformed the place (although I don't think my parents are up for making this a common venue to rent). My brother and I brewed 20 gallons of beer for the event and it was thoroughly enjoyed. The chest freezer we converted to a "keezer" worked great. Really the highlights for me was hearing my Grandpa speak from the heart to the new couple and me being able to announce the new husband and wife. It was a day full of happy emotions. 

More Scan Details

For those of you interested, here are my two most recent CT scans. The measurements shown on the images aren't the official ones but I'm sure you can see a significant difference between the two.  The images are a cross section of my lower abdominal region looking up towards my head.

Here is the scan from April 29th, 2014 where the tumor was measured to be 61.60x55.20mm or 2.4x2.2in which is nearly the size of a tennis ball.

Here is that same region from July 14, 2014.  The tumor is now measured to be 35.80x21.20mm or 1.4x0.83in which is more like the size of a robin egg.

This was after the tumor continued to grow while on Docetaxel and no treatment for three weeks while waiting to start the new clinical trial drug.  So in all likelihood the mass was even larger at one point.  As excited as I am with these results I have to remember this is still a marathon and we can't see the finish line yet.  The doctors were surprised with these results but are cautiously optimistic on how long the drug will be effective.  Honestly I was hoping for the tumor to stay the same size until the immunotherapy trial opened up.  Looks like I will stick with this drug and hope for it to continue to work well.  I have had a little more fatigue lately but really nothing compared to my MVAC days.  Cycle 3 Dose 8 coming up on Wednesday then a nice relaxing float down the Yakima River on Saturday.  I love summer in the PNW.

Scan Results

So we got some great news yesterday.  Scan results showed shrinkage of 60%!!!!  This was unexpected for myself, the doctors, and the study.  Needless to say we were thrilled with the news. My lymph node is now smaller than it was in January when it recurred.  Hooray for clinical trials!  It has been a long six months with no good news so this was much needed.  Thanks again to all of you for your support.

As promised, here is the timelapse of our sandsculpting.  Remember, everything is awesome!

Enjoy Life

This weekend I will get a chance to meet up with some good friends and play in the sand at Cannon Beach.  We will be there with a lot of other people competing in the 50th annual Sandcastle Contest.  Although there will be judges we will just be aiming to have a good time and hopefully please the crowd.  My friend Mike has gotten us together for this event as he has on many previous occasions.  This year will be his third competition since his lung cancer diagnosis, the guy doesn't let much slow him down.  The past couple weeks however his health has taken a bit of a turn as his current drug regiment is no longer working for him (sadly I can relate).  He will be starting up a new regiment and I really hope it works for him.  What I do know is that he will be enjoying his toes in the sand directing us to create his latest sandy masterpiece.  We will slave for 6 hours moving tons of sand and whittling it down into sculpture.  The final work will be gazed upon for a couple hours at best as the tide comes in to wash it all away.  Nothing but change is forever.

Summertime?!

Well it is June now and usually that means we have another month before summertime rolls in.  I feel like this Spring has been pretty warm and dry, no complaints here.  I just finished up the first cycle of the new treatment and thus far have had little to no side effects.  In fact it has made me realize how bad some of the other drugs were making me feel.  This is my "off" week and I head back up to Seattle next week to start round 2.  We will do some more scans at the end of that cycle and have a good idea if this is working or not.
We did get some good news last week though, my LD (Lactate dehydrogenase) levels have plummeted since starting this new treatment.  LD can be used as a measure of cell turnover and a high level can mean that you have rapidly dividing (and dying) cancerous cells in your body.  In Fall of 2012 my LD levels were nearly 3 times the normal level.  They returned to normal after my surgery up until last August.  When the cancer returned the LD levels were on the rise and were not slowed by the Docetaxal.  However with just two doses of the trial drug my LD has dropped significantly.  Really hoping this means that the cancer is being affected.  We will know for sure in about 4 weeks.  Until then I plan to be enjoying the lovely weather.

New Trial Time!

Ok so I haven't been very good at keeping this thing up to date.  Last I left off we were doing Docetaxel for treatment and the only results we were getting were hair loss, nose bleeds, hiccups, and neutropenia.  Oh wait, those are side effects, not the results we were looking for.  A few weeks ago we scanned to see how things were going and the results weren't promising.  The lymph node had grown again to 40% what it was at the end of January to about the size of a baseball.  Good news was that it is still undetectable elsewhere.  This basically meant the drug wasn't cutting it so time to move on.  The options were Pemetrexed or a new trial drug.  Pemetrexed is a standard traditional chemotherapy drug and by traditional I mean the type that tries to kill the cancer before making you too sick.  The trial drug was one we had talked about before and targets a protein on the cancerous cells to deliver the chemotherapy drug and hopefully leave all your normal cells alone.  The catch however was that there was a waiting list that takes top 3 and I was number 4.  This would mean I would be at the top of the list when they accept more candidates in 10 weeks.  Ten weeks, seems like a long time to wait so I wondered what the other options were.  Can we do Pemetrexed in the meantime?  Should we shoot this thing with some radiation to stunt its growth?  Turns out my oncologist had one other item of news, my blood counts have been on a steady decline for the past couple months and aren't bouncing back as nicely as they used to.  This was even with the aid of a Neulasta shot to boost my white blood cells.  This was due to the amounts of chemo I have been receiving but the dangerous part is that the levels can become chronically low.  Traditional chemo drugs do have this side effect and you can imagine it is one to avoid.  Chronically low blood counts would be bad for day to day life but also exclude me from being accepted to any future drug trials. 

So here I am, sitting in the doctors office being told that my cancer is still growing, my blood work isn't looking good, and that as a result I should do nothing and wait the 10 weeks for the trial to open back up as doing Pemetrexed or radiation would very likely make me ineligible for this and future studies.  Not comforting news.  As a side note, my oncologist confided in me that he figured I had a 50% chance of getting into the study in just three weeks if one of the other three candidates became ineligible.  He happened to know a colleague that had a patient who wasn't doing so hot.  Great, so now I'm hoping somebody's condition gets worse so that I get on the trial faster?  That can't be good karma.  We left the doctors office a bit frustrated as you can imagine.  I decided to sleep on it for at least a week to make a decision on our next steps. 

A week later, after thinking about my options, I got a call from my oncologist with good news.  A patient had dropped out as a result of their lymph nodes being too small to be eligible.  So I was in!  And I didn't get in as a result of someone's bad results it was because the patient was getting better! 

This Wednesday was the first infusion.  Luckily it only takes 30 minutes but since it is a Phase 1 drug (first time in humans) there are a lot of blood draws, EKGs, and other tests to make sure I am ok and figure out how long it takes the drug to metabolize in the body.  As a result Wednesday's visit was a 9 hour ordeal.  Then there are draws on the following three days.  So I am pretty much living up in Seattle for the time being.  This only lasts for the first cycle so after three weeks it will be more manageable.  Side effects so far are non existent so I hope it is working on the cancer.  Next scan is in 8 weeks so expect an update at least around then (hopefully sooner).

On a lighter note, the hair is coming back.  Once again the beard is coming in nearly white and progressively getting darker.  I was getting used to the no shaving or haircuts.  It has been nice hanging out with the nephew who is obsessed with Thomas the train and RC helicopters.  Looking forward to heading over the mountains this weekend to visit the folks.  Should be 80degF and sunny, maybe time to open up the pool?  We will probably spend some time helping prep the place for my youngest sisters wedding which is this August.  She asked me to officiate which makes me excited and nervous.  This will be my second wedding I have performed but the first had like 6 people in attendance, this one will be more like 200.  Wish me luck!

Springtime!

It didn't quite feel like spring was here just yet when I was in Seattle a couple days ago and some form of icy sludge fell from the sky but yet today it is sunny and brisk and I see many things blooming (sorry allergy sufferers).  Enough about the weather, might as well get down to the details.

Had my CT scans done this week and the docs came back with what they call "stable disease".  Not exactly the most friendly of terms to hear but definitely not the worst.  Basically in the last six weeks with two doses of docetaxel we have slowed down the single tumor growth to a mere 15% increase in size.  At this point it is hard to say if we are keeping it at bay or the next data point will show some shrinkage.  The best news of course is that there is no evidence of the disease hanging out elsewhere in the body.  After some discussion of current options I decided to keep with the current treatment regiment for another six weeks.  If things are still looking "stable" or responding we will stick to the plan.  If not there are some other trials available that are showing promise that I can change to.

Good news is that this chemo is not nearly as harsh as some of the earlier stuff.  It has been two days since treatment and I feel pretty good.  Appetite came back pretty quick and the nausea is pretty harmless at this point.

In other news, I finally received my Employment Status Review and it looks like April 21, 2014 will be my last official HP employed day.  I know that my team would have me back in a heart beat and I am very glad to have their support but taking this time off is what I need to focus on recovery.  I know I will return when the time is right.

Now to go and enjoy some sunshine!

Beautiful Day

Should have posted earlier but I finally made it out of the hospital on Monday.  Ended up sleeping most of yesterday as it is hard to get some good shut eye with nurses bugging you every couple hours in an uncomfortable bed.  Immune system is back on line thanks to some help from a few nuepogen shots but I am still keeping a low profile. 

Today is bright warm and sunny and I am having a small bbq to celebrate getting older.  Still need to avoid large crowds for a few more days and really don't want to get ill again before the next round of treatment on the 19th.  I have a CT scan next week as well which will tell us if the docetaxel is working or not.  Keeping positive thoughts and fingers crossed until then.

Focus Time

So chemo has started, the job has been shelved, and I am focusing on my health.  I just completed the second round of chemo (Docetaxel on a three week cycle) and caught myself a nice head cold that started a week ago.  The cold seemed fairly benign besides the sinus headache but it was followed up with a slight fever Tuesday night.  For those who are unfamiliar, fevers during chemo are dealt with seriously.  Mine happened to start at midnight and the on call doc properly suggested I go to the nearest ER to get checked out.  Begrudgingly I followed the suggestion hoping that this wouldn't be a long ordeal.  Chemo drugs cause a drop in your immune system and a fever is a sure warning sign that you have an infection your body can't quite handle.  Sure enough, the blood work showed that my neutrophil counts were low enough to be considered neutropenic.  This means that my body is unable to deal with a bacterial infection by itself so they hooked me up to IV antibiotic drugs and admitted me to the hospital.  Luckily Lorri came along so I wasn't dealing with this alone. 

At this point I figured that I had just an overnight stay at the hospital.  Should be out of here by Thursday, right?  Guess not.  My neutrophil counts have actually been dropping for three straight days which is in the wrong direction.  I think I'll be lucky if I get back up to stable levels by Monday.  I guess it was a good thing I went to the ER when I did because that infection (which was likely a UTI but not detectable now) probably would have gotten much worse if left to my own self to resolve.  The IV antibiotics have cleaned up shop and all my lab tests show no infections and I feel good.  Now it is just a waiting game until those counts come back up to normal.  Until then I'll be attempting not to go stir crazy in here.

Relapse, it's a bitch

Haven't updated in awhile.  Things were going really well up until a couple weeks ago.  I had returned to work last Fall and enjoyed a great week in Maui with family and my girlfriend in January.  Had a CT scan that showed a 4 x 4 cm lymph node in my groin region that didn't exist last September.  Nothing visible to a nearly 2 in x 2 in node is not great news, it is on the move again.  The best thing to do now is go back to chemo, bleh.

Good side of this, it is not congregating anywhere else besides this lymph node that is far away from vital organs.  There are also a number of drugs and trials coming up in the near future that we can throw at this.  Bad news is that this is bad news, recurrence at this rate of growth after the many weeks of chemo and extensive surgery I have gone through doesn't bode well.  However I am still in very good health otherwise and young and can power through this chemo crap.

I go in Wednesday February 5th to start up treatment again.  Hopefully the Seahawks parade allows me to get there on time :-)

Girlfriend and I on a sunset dinner cruise in Maui

On top of SilverStar in January