Wednesday, October 29, 2014

bitter pills to swallow

It's done.  I just took my first dose of the BRAF and MEK inhibitors.  I have been dragging my feet a little on this one.  It turned out I needed a baseline brain MRI before I could start the drugs, and they couldn't get me in until today.  I was happy for the delay.

I have had some time to research my options (or figure out if I had any).  I communicated with several doctors around the country.  The consensus is that this should be my next step.  I also asked some people to share long-term success stories after taking these medications.  They are out there.  Good stories are out there.

The drugs are dang effective.  I can't really wrap my head around how exactly they work.  From what I understand, they block a pathway the cancer needs to make a certain protein? These drugs are called targeted therapies.  They don't work like a chemotherapy or immune therapy.  According to the information that came out earlier this year (when the combination of these two drugs were FDA approved), 76% of patients have a response.  Some of those responses are quite dramatic and happen within days of taking the pills.  The median duration of the response is 10.5 months.

Which brings me to the reason I have saved these drugs for last.  Eventually, the body finds a way around the blocked pathways and becomes resistant to the drug.  There are numerous stories that once the body figures that out, the cancer comes back with a vengeance, giving the patient very little time at that point.  These stories are not what I would call few and far between.  I worry this will mess with my chance for a complete and long term response.

For years now I have refused these drugs based on the great responses that my cancer has had to immunotherapies.  I believed we could cure this with that approach.

But it looks like I need to try a different route for a while here.  I don't know why this always has to be a nail-biter with me, but to be honest, I'm having pain now from the tumor.  Ibuprofen has been enough on most days, but there have been two nights where I have had to take pain pills.

It hurts to put my right leg into pants.  It hurts to twist my body.  It hurts to run or jump.  It hurts to take a deep breathe.  It really hurts to laugh.

So for the first time in almost 3 years I'm okay with taking the targeting therapies.  Not only will they take away the pain, but I will have many other options available once I've tried these drugs (most trials I'm looking at require that you have tried these drugs, and my Florida drug will be available after I'm on these as well).  And of course there is the chance that I respond to them for a long time.

So, we move forward.  The side effect profile for this class of drugs includes fevers, fatigue, diarrhea, arthritic pains, skin rashes, and hair thinning.  I really don't know how I will react so we will see how it goes.  Thank you for your prayers in our behalf.  We are doing just fine.  It really is amazing when we get to an obstacle that seemed insurmountable before, it turns out to feel like just another bump in the road.  We can do hard things.

Wednesday, October 15, 2014

scan results

I really don't want to admit it, but the tumor is growing.  This is what we saw yesterday.

Compare this to the pictures below.  It just looks nasty now.  The radiologist used the word "engulfing."

And so, we look for another treatment.  My first choice would be the Anti-PD1 drug that was just approved in last couple of months.  This is the drug I was getting on trial in Florida.  It was helping with this tumor.  It has been approved only for second line treatment.  Meaning the patient has to have tried IPI (Yervoy) and the Braf drugs before insurance will pay for it.  This is a serious blow.  I think I heard $15,000 a month, which just isn't feasible.  

So the plan is to start the BRAF drugs.  They are pills taken twice a day at home.  I will take two different kinds.  The response rate is 75%.  They work for an average of 6 months.  If we can shrink this bad boy enough we could take it out surgically.  If the BRAF drugs do not work we could then move onto the PD-1 drugs.  

I honestly believed yesterday morning that I was on my way to a cure.  This disappointment is one of my biggest yet.  I keep getting so close! 

As the insurance approval comes through I have a little time to make sure this is the right direction.  There are many side-effects to these drugs, one that seems universal is extreme photosensitivity.  Hoping to find a sunny spot to take the boys for a couple days before this all starts.  I'm sure to be back in the ring by then, but on the cloudy day I think I'll just try and pull myself together.  Roll with the punches, Alisa.

Thursday, October 2, 2014


Several years ago my neighbor came home from a California vacation.  He raved about how much fun they had had, how perfect the weather had been, and how hard it was to come back home.  In the background of this conversation were mountains blanketed with orange and yellow.  The grass was still green and soft.  The zinnias vibrant pink and orange, and the sky a neon blue.  Cool enough for a jacket, but warm enough for short sleeves too: whatever you looked good in was just right for the day.  I remarked that luckily it was September in Utah so the transition should be an easy one.  He said, "I can't enjoy the fall because I know what's coming."

One marvelous miracle about cancer is the simple appreciation it has given me for the now.  Regardless of what is ahead, I have today and all it's beauties.  I can enjoy days or moments or weeks for just what they are and not what they could be or will be.  

And in September this is the easiest.  This September particularly.

Here are some of the good things of the month captured on my phone:

Sept. 2nd.  My dad brought over my mom's famous cherry pie before the big scan results.  I had pie for breakfast for two weeks.  I know that is very wrong, but it brought me all kind of joy in the mornings. 
  This is before the TIL trial.  The tumor is on the left, right under the liver, dark and invading.
Sept. 3rd.  The tumor is smaller and less menacing.  The pictures aren't exactly on the same plane, but pretty close.

Happy day at the Huntsman!!!  Cannot believe my luck.

Sept. 6th.  Ginger plays at the net.

Finally some fuzz on top.  You should see it now, it's growing like crazy.

Apple picking at Grandma's house.

Sept. 7th.  We love all our garden produce around here in September.  Eating healthy is just natural right now (unless a pie shows up on your counter).

Sept. 7th.  My sister Kari found monarch caterpillars in her front yard this year.  I remember watching this magic in my grandma's basement as a child.  This day we had a caterpillar, a chrysalis, and a fresh butterfly.


Sept. 7th.  My lover of outdoors, free time, nature, and fall.  Sam has had a great month.

Football season and the Cougars are winning.  Josh has also had a great month. 

Many evenings at the rope swing.
Sept. 12th.  Josh turn 35!

I think they stood by him stiffly for a picture so I said, "Come on, at least touch him!"  This is what you get.

Sept. 13th.  How can we get kids to bed on time on nights like these?
Sometimes when the boys are in school we come out side to smell the air and watch the clouds.

Sept. 14th.  A dinner in the mountains.

Sept. 20th.  A Cache Valley Utah sunrise.  This is where I grew up.  It still feels like home.

Josh did the Top of Utah Marathon (his first!).  He not only stayed with the pacer, but talked to him almost the whole way!  His wife had cancer and so they had that bond.  Josh said he wasn't tired until the last mile.  What the heck?  

If you need some inspiration, go cheer at the finishing line of a marathon.  Very cool.

This is usually what I wear on my head, by the way.  A scarf and then a hat.  Places like church I will wear my wig, I didn't have any pictures of that to pull up. 

Sept. 22nd.

Pastel, patchy mornings.

Sept. 27th.  Weekend with the cousins.  Rainy day exercise at Josh's yoga studio.

Sept. 28th.  This is what Josh gets for sleeping during church.  Luckily he tried to cross his legs and discovered the prank before he had to walk up to the pulpit to say the closing prayer.
Sept. 30th.  September is queen of the year, and this was her crown.