Friday, September 30, 2016

Boston - Part 2

The meeting with the doctor today at Dana-Farber was truly awesome.  First of all they are amazingly organized and when your appointment is at 2pm, they call you back at 2pm and you go into the little room and the doctor comes in right away.  I don’t know if that is their usual thing, but that is how it worked for us today.  And I found out that in Massachusetts, their health information system is statewide. So if you go to a doctor in one town, but another doctor the following week somewhere else, they will both have access to your full medical record.  Thank you Mitt Romney, even though you don’t want to take credit for it!!!  The rest of the nation could certainly learn from Massachusetts.

For the appointment, first the intern or fellow, doctor came in and went over my history clarifying things as we went through it, which took about 30 minutes or so.  Then he went and met with the doctor to discuss everything that we had gone over and the doctor came in and met with us.
Overall what he was able to tell us and go over wasn’t that different from what I already know.  We are looking for that T790 mutation and then if it’s not that, then we are either looking for the PD-L1 inhibitor, or (and this part is new) then we look to see if there is some other mutation that has taken place. And he talked about the eventual possibility of clinical trials as well. 

What made it so awesome was the attitude.  They are more than willing to be a part of my medical team, even if it is long distance.  And they are so positive and willing to take a look at all possible avenues to treat me, even clinical trials or new research.  And this doctor knows the doctor at Fred Hutchinson in Seattle, so that is an even bigger plus.  They have met at conferences and have collaborated on patients before. 

At a certain point I was worried that I was wasting my time coming out her, but I do not think so at all now.  This was completely worth it in every way.  And even though it’s been such a quick trip and I really can’t explore much because I can’t walk far, we had a fabulous “Boston” dinner tonight, a full lobster feast for two!


I am writing from Boston today.  My brother and I traveled here yesterday, on separate flights, but arriving within an hour of each other at the airport.  It was a quick cab ride to the hotel and we were set.  It’s an older hotel, but I feel so lucky to have gotten a room for both nights.  They fill up quickly, it’s the only hotel within about a 10 to 15 block radius, and there are a lot of medical centers here, as Joe said, it’s like “Pill Hill” in Seattle.  But we were lucky and so here we are, able to walk across the street to my appointment which is in a few hours.

The last few weeks have been a bit of a roller coaster for me.  Once I found out that the treatment wasn’t working and that the cancer was starting to progress, I wasn’t too devastated because, like I said before, we knew this would happen at some point in time, it’s inevitable.  But then my symptoms started to get worse and I was getting more and more out of breath at just the slightest exertion, to where last week by Friday I was getting concerned.  I called the doctor Friday afternoon and he arranged for me to go into the hospital right away for a CT/Angiogram, which I did.  What it showed is that the middle lobe, which was partially collapsed, had now completely collapsed and that the main bronchial tube was blocked.  So I was put on antibiotics and steroids right away.  

To back up a bit, when it was determined that the previous treatment wasn’t completely effective anymore, my oncologist had told me that I did not need to refill that prescription.  He said I should take what I had left, which was about 5 days, but did not need to reorder it.  But when I went to see the doctor at Fred Hutchinson in Seattle, he was surprised that we had stopped the medication.  He said that he doesn’t stop treatment until the next treatment is started, so there is no gap, and he advised me to talk to my doctor and start it up again.  Which I did, I was able to get it overnighted and started it last Friday, the same night I had the CT and started the antibiotics and steroids.  All of these things together have helped immensely in making me feel better and have improved my breathing significantly.

I don’t know if the middle lobe has refilled or not, but it certainly feels like it has.  I saw my pulmonologist on Monday and they were telling me that it can refill, if the tumor can be shrunk, and the bronchial tube is able to pass air into the lung again, it can definitely refill; but there is a window of opportunity of about a month.  If it goes much past that, then there could be scar tissue and then it may be too late. 

I’m excited to see the doctor today at Dana-Farber, however unfortunately I found out this week at my oncologist visit in Tacoma that they (He, Dr. Senecal and the doctor from Seattle – Dr. Martens) decided to send my pathology to the University of Washington instead of Dana-Farber.  And the results are not back yet and probably won’t be for a few more days or even a week or two.  So that puts the doctor I will see today at a disadvantage; the whole idea was to have the pathology sent here, they would do the molecular study and then have an appointment with me.  But nothing has worked out to allow that to happen, the biopsy was delayed and then they changed where they sent it, and now I don’t know that this doctor will be able to do anything today except talk with me about my situation, see the scans that I have had and be prepared for when the pathology results do come in, to help weigh in on what direction we should go in. 

From what I understand at this point, it comes down to three possible scenarios.  If they find the T790 mutation, that is the best case situation and then the treatment would most likely be Tagrisso.  You may have seen commercials for that drug on TV.  If it is not that mutation, then in a separate liquid biopsy that was done on Wednesday, they will look for a PD-L1 inhibitor (don’t ask me to explain in any more depth than that, I’m lost beyond the name) and if that is the case, then we will be looking at immunotherapy.  If that is not the case, then I may be looking at chemotherapy again (and rocking the bald head again).  So everyone keep their fingers crossed for the T790 mutation and that we find out as soon as possible!

Wednesday, September 21, 2016


My dear friends, I have taken a bit of a break from writing about my journey, but the time has come to update you all on my status.  I had a scheduled CT scan about 3 weeks ago that showed progression (‘not dramatically so” according to my oncologist, “but unequivocally so”). What I get from that is that it’s slightly concerning, but not the end of the world type situation.

What it does mean is that the treatment that I have been on since November 2014 has stopped being effective and we need to figure out as quickly as possible what’s next.  The results from the PET scan a week and a half ago showed that the best type of biopsy would be a bronchoscopy, which was done two days ago on Monday, and was fairly uneventful, and was sent out to Dana-Farber Cancer Institute in Boston.

The biopsy will show if the cancer has mutated and if so, which mutation.  This information will help them decide which treatment plan will be the best course of action for me.

Because my oncologist is not a lung oncologist, I have decided to get some additional advice, and will see a lung oncologist (Dr. Renato Martins) at Fred Hutchinson in Seattle this week on Thursday, and also will see another lung oncologist at Dana-Farber Cancer Institute in Boston on September 30th.   Truthfully I’m not excited about the quick flight to Boston, it tires me out just thinking about it, but I’m very excited that I was able to get an appointment with them; they are currently leading in cancer genetics. 

Right now it’s a little frustrating because the progression has affected my breathing a bit, and I’m also coughing quite a bit.  The bronchoscopy (sending a thin tube with camera and needle down my esophagus to see and also take tissue) irritated my lung, so hopefully that will subside soon!  Otherwise, on the plus side, all of the awful side effects I was enduring from the previous medicine (Tarceva) have subsided, so no more rash on my face, my scalp is not itching, my intestines have settle down, and I have slightly more energy and don’t feel so stiff.  The only problem is that I feel like I can walk faster, but then my lungs say no, so I do get out of breath very easily.

The main point here is that something is happening, but I think it will all be under control in a few weeks, as soon as the next treatment is decided on and I can start whatever that will be.  I’m not worried, it’s exactly what we knew would happen eventually, that the medicine would stop working and we would need to go to the next treatment.  I lasted for almost two years on Tarceva and that is actually pretty good.  There are many options out there for me, and by the time we run through those options, there will be even more options that have been created after that.  So I do not give up hope, I continue to fight my battle!  Thank you to all of you out there who support me; it means everything to me.  

Thursday, April 23, 2015

Relay for Life

I think I've been riding the high wave from the positive CT scan a few weeks ago. Life has been so uneventful lately! My cancer journey seems to have hit a smooth patch of road for the time being, so I’m enjoying that.  And because I am grateful, I want to do something to give back, to help others and support the big battle against cancer.  So I have decided to join a team for Relay for Life. 

I had been thinking about this for quite some time, that I wanted to give back somehow; I just wasn't sure what to do.  I looked up all the different walks/runs that are out there and decided that Relay for Life seemed like a good fit.  But I really didn't know anyone that was participating.  So I browsed through the list of teams and it turns my very own oncologists office has a team.  So I have joined the Northwest Medical Specialties Team and will fund-raise, walk and support the team.  Here is a link to my page: Juli's Relay for Life Page. Please consider making a contribution; any and all donations are most appreciated and will be helpful, no matter the amount.    

Every day it seems like I hear about someone or actually know someone that has recently been diagnosed with cancer.  So I watched the recent 60 Minutes report on cancer with a lot of hope.  I know that for cancer patients, it can seem like “the cure” is so far away, and that it may not be available in our lifetime.  But really, if you look at how far they have come (they being the research scientists, I guess), I think there has been an amazing amount of progress in treatments and the effectiveness of treatments.  Prognosis and outlook are a lot different for almost any cancer at early detection now versus twenty or thirty years ago.  It’s the whole “How do you eat an elephant?” thing…  One bite at a time.  I think curing cancer will be in such baby steps, and be so subtle, that there won’t be some specific day where a doctor comes out and announces – “we've cured cancer!” I think it will be more like, one day we will all realize, “Wait, everyone who gets cancer now usually survives and gets better.  Remember back when getting cancer meant that you could die from it?”

That is why supporting whatever medical charity it is that you support is so important. They all need money to continue research, to make treatments more effective and to help people get better.  So I urge you to support something.  If you would like to help me reach my goal of $500, that is awesome.  If you already support MS, or the Susan G. Komen foundation, or some other cause, then that makes me happy too!  

Sunday, April 12, 2015

CT Results, Milk Shakes and Photography

Last Thursday I had a CT scan.  Because I’m impatient and I couldn't wait until next Thursday’s appointment to hear the results, I called on Friday and talked with my ARNP.  And because she is awesome, she told me: stable, with no progression of disease.  For this I am very grateful and happy. And I did enjoy a celebratory peanut butter, hot fudge, I got a good CT scan, milk shake!

I don’t know about anyone else with cancer, but for me, yes in the back of my mind, in the tiny corners, there is the little fantasy that one day they will tell me, “Juli, we don’t understand how it happened, but the cancer is gone!”  I know it’s unlikely, but you know how it is; I think it’s the small child within, hoping and wishing for the impossible.  But I also think that the fantasy exists because I am ever the optimist. The glass is half full; no matter the odds, I choose to believe that I will prevail.  That whatever treatments we need to use, whatever medications they will try, they will continue to work for a very long time.  At this point in time, I have no reason to believe otherwise.

So to my ears, right now, stable with no progression of disease are magical words.  Words that mean the two medicines are doing their job.  This also means no more complaining about side effects, because they are worth every inconvenience. 

Instead I focus on my life and the world around me every day.  At the beginning of the year, in my effort to learn more about photography, I started the 3’65 Project, where you take a photograph every day and upload it.  It seemed like an easy thing at first, but I’m finding that it’s a bit more of a commitment than I anticipated, but a commitment that I am enjoying immensely.  

What I have to reconcile myself to, as a dear old friend pointed out to me, the challenge is to take one picture each day; they don’t all have to be a masterpiece.  The wonderful thing is that I have become much more observant of the details around me, large and small.  And even though there are many missed pictures, I love the fact that I notice the potential pictures in the first place.  I see the beauty more and more in the world around me and I am more and more appreciate of it every day.

Tuesday, March 10, 2015

Avastin and Shrinkage

Wow, I haven’t posted anything for a while!  So quick housekeeping:  I had an infusion last Friday. Everything went pretty well, it took about 2 hours and my port worked just fine.  With about 30 or 45 minutes left, I started feeling a little chilly, so they brought me a warm blanket.  I’m seriously considering installing the equipment necessary to have these blankets at home.  They are wonderful!  After I finished with the infusion, I went home and just got colder and colder!  I ended up having severe chills and a fever; I had two blankets wrapped around me and my teeth were chattering.  After much shivering and chattering, I finally fell asleep on the couch and when I woke up an hour later, I had a fever, but the chills had passed. 

I called my doctor Monday morning and let them know what happened and they asked me to come in and get blood work and to have a culture taken from my port.  I did just that and I am now waiting to hear the results.  But I really think it was more a reaction to the Avastin, rather than an infection. The first time I had the infusion, it was administered over 90 minutes.  This last time it was administered over 60 minutes and then next time it was supposed to be 30 minutes. I think it’s possible that my body just didn't like the speeded up version.  I guess I will find out soon enough.

Now I want to share about a book that I read recently. It is by Bryan Bishop and is called “Shrinkage.”  This book was recommended to me by a dear friend from high school (thank you Mike!).  Bryan Bishop was diagnosed with an inoperable brain tumor and was given like 6 months to live.  This was the first doctor that he saw.  But he and his wife didn't give up, he heard about another doctor that specialized in the brain tumor that he had, and after seeing this doctor, was put on an angiogenesis inhibiting drug called Avastin!  This treatment worked for Bryan, it shrank his tumor and now, five years later he is just perfectly fine! 

This gives me hope, since I am on Avastin as well. I mean, I know that it’s a different kind of cancer completely, but I don’t really care.  It worked for him, and I believe it could be very effective for me as well.  And I highly recommend the book, it was a refreshing and comedic look at having cancer, and it was just what I needed.   

Sunday, February 22, 2015

A Port and the Oscars

Quick update: my port was placed after some shuffling around of doctors.  I was sent to one doctor that, after meeting him, I realized I didn't have a lot of confidence in him, mainly because he didn't seem to have a lot of confidence in himself.  So I switched to the Radiological Associates at the hospital and everything went smoothly.  I was also vaccinated for the measles (whew!). It’s a relief to not have to worry about that now, and I won’t even go into how I feel about the reasons why it was necessary for me to have a vaccination in the first place. 

However, didn't find out until after the port was placed that my oncologist decided that, although I was scheduled for an Avastin infusion that same day, that it wouldn't be a good idea to do the infusion and that we should wait three more weeks until the port was healed. So I still have two more weeks until my next infusion and I am looking forward to it.  I can feel the difference when I get it; after the first infusion I noticed a direct improvement in my breathing and lack of coughing and wheezing.  These symptoms have gradually started to return, and the wheezing is just plain annoying at night when I am trying to sleep!  It’s good though, because it shows that the Avastin really is having an impact and is working.  And it better work, I was looking at my claims the other day and saw that the Avastin costs a shocking $20,400 per infusion! This is so crazy I just can’t believe it.  Again thank god for insurance! 

Now, tonight is Oscar night, and if you know me, you know that this is a big deal for me. We fill out ballots and we each put money in the pot. Whoever gets the most correct guesses wins the pot.  I never do very well, but everyone else does.  I tend to go with who I want to win, instead of who really has a chance or is already a strong favorite. So even though I usually come in last, it's a lot of fun!  This is the first year in a long time that we have seen most of the movies that were nominated for best picture.  Back in the day, before kids, we usually saw all of them.  But then kids happened and also they expanded the category to be up to ten movies, and for quite a few years we were lucky to have seen any of them.  Now that our kids are older, the fun is in going to the movies with them and being able to discuss the movies with them!

We also make it a fun night of appetizers for dinner while we watch the show.  I make lumpia rolls and then we supplement that with other assorted snacks. So this is a happy day for me... In the realm of me looking at my life every day and trying to see or find the things that make me happy, this day scores very high! I relish just puttering in the kitchen making the lumpia rolls and then am so looking forward to watching the show with my husband and enjoying the tasty appetizers!