Stability Continues

Ok it has been forever since I updated.  Good news is that I tend to not update this often when things are going well and guess what, things are going well!

I am still on the experimental Immunotherapy trial and really couldn't be happier with it.  Really next to nothing on side effects when comparing traditional chemo and even better is that it appears to be working.  I still have an enlarged lymph node but it really hasn't changed in size since I started this therapy 16 months ago.  In talking with my doctor, he says that these Immunotherapies have a tendency to find a new equilibrium point where the cancer is neither advancing or shrinking.  At this point I am OK with this outcome although the goal is always eradication of the cancer.  My team here at OHSU has also said that I am one of their poster childs for this drug which is good to hear but also means that there are some patients that are not as lucky as I am.

Being on an experimental drug trial is tricky. I always have a bit of stress in regards to staying on trial because you have to be a very healthy and stable subject to remain on trial.  I have been kicked off trials before and it is not fun, especially when the drug is working.  We actually had a bit of a scare last fall due to my total bilirubin (TBILI, used to evaluate liver function) values being high enough that they didn't give me drug that week.  A few days later we tested my levels and it fell into acceptable range.  Two weeks later we were set to resume the trial and even with a four week break, my TBILI values were even higher!  This definitely upset me because at this point it had been four weeks since I had received drug and if we skipped this week I would seriously be in danger of being removed from the trial.  The drug companies have rigid rules and can kick you off trial for a myriad of reasons to help keep their trial scientific and looking good.  Luckily, I have a stellar team here at OHSU.  They made the call to administer drug anyway and lobby the drug company to make an exception.  Keep in mind my TBILI levels were not elevated so high that my doctor was concerned of my health safety (they needed to be 3X higher for them to be worried) and honestly a high level is not nearly as threatening to my overall health as say, the bladder cancer we are trying to treat with this drug.  On top of that I have taken many FDA approved drugs that basically say they will kill nearly 5% of the population that take it, so this seems like a stupid reason to kick me off but it is possible.  Luckily my team went to bat and got me approved for a waiver.  Of course since then my TBILI has been up and down with little rhyme or reason.  We still scan every six weeks and I get treatment every two weeks and will continue this for the foreseeable future.  When and if this drug gets FDA approval I will have the ability to take a break from this cycle and not have the rigidity of the trial.  That will be a good day!

Speaking of good days, five weeks ago was a REALLY good day.  Lorri and I got married in Maui and it was awesome.  It was a beach wedding with a smallish group of 30.  We were there for about a week and did some snorkeling, whale watching, paddle boarding, and just lounged around eating good food and hanging out with friends and family.  Below are a few pictures.

While we were enjoying Maui our good friend Jennine was puppy sitting for us and she sent us this awesome gift on the day of our wedding:

As you can see our little Cider is no longer a tiny puppy.  She is over 50 lbs now and progressively getting better behaved.  Most of her bad behavior currently involves chewing on rocks and still chasing the kitties.  I have found that regular exercise for her definitely helps calm her down.  She is going to turn out to be a good dog.

Well hope that satisfies you readers for the time being.  Hopefully next update isn't 8 months from now :-)

Hello Again

No news is good news, right? Turns out this is the case.  My last set of scans showed not only no new growth or spread but also had measurable shrinkage!!!  We are talking 3mm or about an 1/8th of an inch but I will take it!

The new drug continues to be so much easier to deal with than any other treatment regiment I have been on. Since my last post I have tried to be more physically active and have done a 5k run and sprint triathlon.  Still painfully slow according to my standards but I have come a long way from even six months ago. I had planned on doing RAMROD this year (event is today) but it is best I did not as the 11 mile bike during the super flat sprint triathlon course was enough for me.  Definitely not in a good condition to knock out a 150 mile and 10,000 ft elevation course today. Maybe next year :)

In other good news, we got a new puppy! Her name is Cider and she is 14 weeks old today and quite the handful.  It is a good thing she is cute so I can forgive her for all the accidents in the house.

First meeting

Don't I look cute at 7 weeks old?

Cider and Jack.  She has nearly tripled in weight since we first took her home.

The older dog has come around to mostly enjoying her company. I think he doesn't quite like all the chewing she does on his tail, legs, ears, lips, basically anything she can get a hold of.  They play together which helps wear out the near endless puppy energy she has.  As for the two cats, they still aren't appreciating the new fur ball as Cider likes to chase after them.  

Here's to hoping that my next update isn't in another five months. Stay cool in this heatwave!

Stable is Good

It has been another six weeks so scan time is here.  Results are in and things are stable. Stable means nothing really has changed in six weeks, no new tumors and no appreciable growth or shrinkage of existing.  Of course we would like to see it disappear off scans stable is pretty good, especially when the immunotherapy I am on has little side effects.  Oh, and I am also being treated here in Portland now so no more trips down to LA every two weeks which should free up some time.  I have been enjoying the nice unseasonably sunny weather here.  In fact we have had the chance to take the convertible out a few times already this year.

Speaking of sunny weather I had the chance to visit the big island of Hawaii a few weeks ago and had a great time, stay tuned for a post on that later!

First Scan on New Trial

Good news folks! Scan results came back with no spread of disease and a decrease in size from 3.1 to 2.8cm. I am so excited and happy with this result. Still not the end but a great step in the right direction. I have even started talks to move treatment up to Portland which will help with the commute. If the trend continues we may even get to start talking about removing the affected node and keeping a good eye on things. 

I am sitting in the chair getting my next dose. Side effects with this are minimal but make me a bit drowsy the first day especially. Time to take a nap and relax. 

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.