14 January 2015 - 11:00 PM

After some visits from a few doctors, including the "Pain Team", whose job is to help manage cancer pain, they decided to do a few things that have seemed to work.

1. They increased her PCA dose from .2mg of dilaudid to .5mg.  She can receive this dose whenever she pushes the button (subject to constraints mentioned in the previous post).  This is only step one because she has been on some pretty heavy narcotics for the last few days with no relief
2. They put her on a continuous drip of Ketamine.  This seemed to help a little better.  One of the nurses said "this drug has a great street value."  We can understand why.  Alisa is having all sorts of vivid dreams and even started singing happy birthday to Sam when she called him (his birthday was yesterday.)  She was a little upset with me that I didn't stop her immediately and tell her it was yesterday (apparently Sam was a little confused), but I couldn't, she seemed to happy.  After 5 days of being miserable and in pain, it was refreshing to see her happy again (if a bit delusional.)  I decided delusional is better than constant un-yielding pain, as long as it isn't permanent.
3. They gave her some nerve blocking injections.  I am sure there is an official name for this, but I must have missed it.  Basically they injected lidocaine into the nerves in her back (between her ribs) and it magically stopped the back pain (the worst of the pain she has been experiencing).  the doctor told her he could do that every 2-3 days.  She came back from this procedure feeling better than I have seen her since last week.

The last couple of hours have been much better than the previous couple of days and I even think Alisa will get a good nights rest.  The downside is that we are really just masking her pain, we haven't done anything yet to try and address the cause (the tumor).

We have a plan to try 2 things.

1. Embolization - I think I got this term right.  Basically they thread some wires and other tools up the femoral artery until they get INSIDE the tumor.  They find the blood supply to the tumor and shut it down.  This effectively kills the tumor.  They were going to try this tonight but it requires that Alisa lay still for 4 hours after the procedure, and the pain she was experiencing was not going to allow that.
2. PD-1 - We are still hoping she can get a dose of PD-1, but they can't do it while she is in the hospital, so she will have to be discharged first.  If her pain is under control tomorrow, we could still get the PD-1 tomorrow afternoon.

The goal today was to get her pain under control.  Success! 

Tomorrow we will come up with a new plan.

-Josh

14 January 2015 - 12:10 PM

After all our efforts last night we couldn't control the pain at home.  Alisa was admitted to Huntsman this morning around 11:00.

They are trying to get her comfortable, then we will decide what to do. They did another CT scan (not sure how different it will be from yesterday (not sure I want to know)

I think they will try and do the radio-frequency ablation today while she is here.

I am not sure what will happen, but I can't imagine going home today.  I don't think they (nurses, doctors, etc) know either.  Alisa asked one of our nurses how often people get admitted because of pain.  He didn't say never, but I don't think it happens very often.

They have given Alisa a PCA, not sure what it stands for, but it allows her to push a button and get a dose of pain medication (strings attached, no overdosing, really only gives medication every 10 minutes) but still, it seems to be working, kind of (she just woke up telling me it still hurts)

On a positive note, we are back in the ICU at Huntsman where we stayed for 6 weeks 3 years ago for IL2 and we have lots of the same nurses.  Alisa loves these nurses.  They gave her a warm welcome and a hug as we came in.


I will try and keep you all updated.  Thanks for the thoughts, prayers, offers to help.  the show of love and support is overwhelming.

- Josh

14 January 2015 - 12:15 AM

The pain has continued to get worse, I have no appetite, and anything I try to eat comes right back up.  Things have done downhill pretty quickly.  I have not been out of bed in days.

This morning I called the Dr to see where I should check myself in.  We ran up to Huntsman and did another CT scan.  In 1 week it grew by 15%.  Part of the tumor is bleeding and ascites has developed.
I was hoping the surgeons could rip it out before I did it myself, but the bleeding makes them more nervous to perform the surgery.  So we have doubled the pain killers and will stick to the PD1/radio-frequency ablation plan.

I have been caught completely off guard.  I hope I can talk about it tomorrow.  I have been talking to my kids about today and that is all the energy I had.

So today we scheduled an infusion on PD-1 for the 15th (the earliest they could get me in).  I am getting appointments with a surgeon and an interventional radiologist.  The surgeons in the tumor board thought that because of the risks of the surgery if there is anything I can do to shrink it, that would be preferred.  The risks seem to be the same as they were before I started BRAF when I talked to a few of them.  I am worried if it continues to grow that the surgery would get harder.  They thought it would be the same surgery in the case that it keeps growing and we don't get a response from the PD-1.

One idea they had is to try and de-bulk the tumor with radio-frequency ablation.  We are not sure I'm a candidate for that, but we could possibly do that while I'm on PD-1, or we can do the surgery after we start the PD-1 if we need to.  I will talk to the two doctors and we can see what can be done.

Today has been a painful day.  I am going to start taking my pain killers around the clock so I don't let the pain get out of control like it did this morning.  Things get pretty hopeless when your insides are screaming.  I've had pain before, but it's always been easily controlled.   This seems to be something different.  It is terrifying to take Percocet and not be able to tell a difference in the pain.  We have a prescription for a long acting pain killer, and it really might come to that.

What keeps me going today is a quote from my friend Cory's Facebook update.  January 1st he completed a 72 hour race.  His goal was to get to 200 miles (can you even imagine?).  He checked into Facebook at one point, "Currently at mile 174.  My leg muscles are in knots unlike anything I've experienced before (duh) and they don't want to unkink.  But it's down the one last marathon."  

Down to one last marathon.

I'm ready to finish this fight.

results

Just as I suspected, the tumor is growing.  I was going to take a picture or what I'm talking about, but I couldn't even look at it on the screen.  It's like twice the size as last time, and just a lot uglier.

The doctor is going to take the case to the tumor board tomorrow.  We are hoping it can be surgically resected.  That would be awesome.  If not we can try and shrink it with PD-1 or biochemotherapy.  I hope a decision will be made quickly, as when these things start taking off (my armpit tumor) they seem to go crazy.

The doctor was surprised that the BRAF wasn't effective, usually at 2 months there is at least stable disease, but usually shrinkage.  I guess you never know.

I'll update tomorrow.

be careful what you wish for

I had my scans done yesterday.  I definitely have a gut feeling what they are going to say when we get the results tomorrow.  Because when the CT machine told me to take breathe and hold it in, my right side hurt.  When I laid on the MRI table I had to adjust my stomach just so so that I was not uncomfortable.  

The tumor feels like it's growing (it's been going on for weeks).  Josh tries to find different explanations, hoping maybe the tumor is ripping away from my organs.  This is the same pain I felt twice now.  Right before I started PD-1 in Florida in 2013, and right before I started the BRAF drugs a couple of months ago.  

If indeed the BRAF drugs are loosing effectiveness and the tumor is still too involved to resect it, I think we would do PD-1 again.  It is now FDA approved so I can get it in Utah.  It was approved with the stipulation that you have to fail IPI and the BRAF drugs (which is why I am on the BRAF drugs).  

I have a tradition to read my journal entries from the past year on New Year's Day before I make resolutions.  2014 my only resolution was to survive (I was very sick a year ago).  I am happy that we made it through the year, for sure.  I told Josh that I would just stick to that same resolution, and he told me to 'set realistic goals'.  And we kind of laughed, but we are pretty terrified.

Last year something happened that I feel very grateful for.  When I was diagnosed at stage IV there was cancer in my liver, bones, and tumors scattered throughout the body.  After doing all my research I prayed that I would be able to try everything (at the time the major options were IL-2, IPI, TIL transfer, and BRAF).  I never wanted to wonder if something would have worked if only we had the chance at it.  In 2014 this prayer was answered.  

We will of course keep trying new things (and old).  When discussing with the boys what will likely happen next (PD-1), Luke asked us what would happen if that doesn't work.  I explained that at some point they kind of send you home to die (I wish I could say that I said that a little gentler, but I was kind of put on the spot).  He quickly decided, "Well, that's a bad doctor."  So there will be no giving up over here.  Josh's work actually switched insurance companies this year and our insurance will now cover some of the major cancer centers in the U.S.  There might be more trials and more travel in my future.  

Who knows?

I will let you know what happens tomorrow.  Thanks for all the kind acts and thoughts and prayers on our behalf.  We are totally going to be okay.  Right?

Just wanted to give a quick update.  Things are going okay.  I saw the doctor a couple of weeks ago and we decided to cut the dosage of medication because of the chills and night sweats.  It has helped.  I have only been waking up two or three times a night to change my clothes and bedding, and the chills are much less severe.  I still feel cold almost always.  My feet hurt to walk on.  In the morning it's like someone has thrown glass all over the floor, and I have to get the kitchen.  I have random painful red bumps appearing and disappearing all down my legs.  Both legs are swollen by the end of the day.  And I generally just don't feel 100%.  I am just over the first cold that I can remember since I started immunotherapy almost 3 years ago.  My blood counts are still a little low from the TIL, so maybe that's why I couldn't fight it off.  This cold came with a cough that was so strong it made me throw up.  Josh slept on the couch because things were just ugly at night.  Luckily he is back, and thank goodness he leaves at 5 in the morning, because that's the only dry spot in bed and it suddenly becomes mine.

I have been a little bummed about my health lately.  I was offered a trip this month.  I know he will be embarrassed that I'm mentioning it, but Josh's brother Mike opened up the world to us and said pick a place, any place.  Like my own Make-a-Wish granter.  I tried to think of somewhere.  I wanted to be warm.  Sun would be tricky (my lips have blistered like crazy after 10 minutes of forgetting to cover them outside), and even slathered in sunscreen and a wide brimmed hat-in a swimsuit I look like I have some communicable disease with these red spots on my legs.  Italy sounded amazing, but do I really want to use that up in the winter?  And how big of beds do they have in Europe, and how many towels per night can I wipe down my dripping body with?  And how will I clean all those wet clothes?  And what if I can't keep going all day like I would want to?  And how will I keep my medicine in the refrigerated during a trip?

And so, it didn't happen (he says I can take a raincheck, so no worries).  There is nowhere I can hide from the disease.  There is no escape right now.  Not even in sleep, which has always been my relief.  I have been having nightmares again, I don't know if it's because my sleep is so interrupted or if it's because I drew a line at the BRAF inhibitors and said at that point things will be bad, and here I am, and in my mind things are bad, so I come up with scary stories to tell myself while I sleep.  I don't know.

During the day things don't seem that bad.  I have been trying hard to find appropriate gratitude for the drugs I'm taking.  I found it in my own words here at the end of the post.  Someone handed me months of extra life.  In pill form.  I'm so lucky I've been around these three years to watch my kids grow up.  It's crazy to think we are spinning around the sun at the same speed.  They change so quickly, and Josh and I are stuck at 22 (ha!).  I'm just so grateful for this bonus life, I know I'm lucky to be here.  I feel really lucky to be here.  More than mad at the disease, and disappointed that things aren't turning out how I planned, I feel deep down very lucky.