FDA Approval for Bladder Cancer Drug!

OK, this is pretty awesome.  Not the trial drug I am on but it works on the same principal.  Tecentriq (aka atezolizumab, aka MPDL3280A) has been officially approved by the FDA as a treatment for Bladder Cancer!

I guess the FDA made their decision faster than expected.  This drug targets the same PD-L1 pathway that my trial drug does.  This is great news and I hope that my drug also gets approval in the future.  But if things don't go as planned I at least now have an approved back up plan.  This seriously changes things, for me and others in my situation.  Before this approval I really did not have another reliable treatment available to me.

The drug will still only be available to those who have tried platinum based therapy (poisonous cisplatin and others) and not had a good response.  I really hope that these immunotherapy drugs eventually replace the nasty chemotherapy drugs as the first line response and not the second line of treatment.  It still boggles my mind how fit and strong I was going into dose dense MVAC chemotherapy and how it ruined me in just 12 weeks.  I have been on my trial drug for nearly a year and a half and have a fraction of the chemotherapy side effects with a better response.  Let's hope this research helps other teams find new ways to combat cancer.

Other Clinical Trial Successes

Lately the news for immunotherapy clinical trials has been very good.  Although an actual timeline for FDA approval is still unknown, a similar drug to the one I am on is hoping for a review as soon as this October!  Great news for the bladder cancer community which has not seen a new drug therapy in 30 years.

Here is an article that follows a patient with similar diagnosis and treatment who has responded well to immunotherapy: Immunotherapy May Help Bladder Cancer Patients Survival 

And since May is Bladder Cancer Awareness month, here are some interesting facts:

Bladder cancer is the fifth most common cancer in the U.S.

Each year, about 73,000 people, mostly men, are diagnosed with bladder cancer. (55,000 men compared to 18,000 women).  The average age at diagnosis is 73.

About 16,000 people die from bladder cancer each year.

The overall cure rate of bladder cancer is 77 percent, but this drops to 34 percent for patients in which the disease has spread outside the bladder, and to five percent for those where it has spread to distant organs, like the liver.

It isn’t known what causes bladder cancer, but major risk factors include smoking, chemical exposure and parasitic infection.

The most common symptom is blood in the urine, frequent urinary tract infections, and pain upon urinating.

Bladder cancer has been linked to U.S. Veterans that were exposed to Agent Orange in Vietnam. Veterans diagnosed with bladder cancer should qualify for compensation and special access to medical care. You do not need to prove that Agent Orange caused your cancer.

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)