easy decision

I talked to the doctor Friday night (I was out of phone and internet range last week).  He said he was surprised with what his radiologists concluded: when the numbers were crunched they estimated a 9% growth, which is within the bounds of what they call 'stable disease' and allows me to continue on the trial.  Today they set me up with appointment to start up again on Wednesday.  

The doctor has seen two patients respond late (after the first 12 weeks), and would hope I could join that club. Two is not super encouraging to me, but hey!

The only trick is this tumor in my armpit.  It needs to be taken care of (growing, and fast).  You can't do surgery or radiation while you are on the trial.  So the plan is get as much of the trial drug as possible, and as soon as I the tumor has to be dealt with, come back to Utah and get it surgically removed (it may be too entangled for that at this point) or radiate it.  I'm sure at that point we would look at doing something systemic as well (IPI again, for example). 

I read through my scan reports last night.  The on my adrenal gland is gone (this would have helped my percentages, although it was under a cm).  There is one near the kidney that has shrunk a little (about 2 cm so that may be pretty significant).  It is probably that tumor that was causing me pain before I started the trial.  There is one that has grown right next to it that is invading the right kidney.

Two of the new tumors have grown a little.  One near the aorta in the abdomen, one right pectoral lymph node.

I am fine with going back, just a little bummed that I flew out there for nothing last time.  And now I have to miss Sam and Luke coming home on their first day of school (mom candy).  And I thought of all the time and money I would have if I was done traveling, and it was sounding really fantastic. 

But of course, then I would still have cancer, with less options.  Not my favorite. 

p.s.  Things are getting interesting around here...I sent James off the his first day of Junior High today.  Funnest thing I've done in a long time.

results

The results were mixed.  Shrinkage of a couple tumors, but mostly growth.  The doctor was going to have his guys look at my scans on Wednesday before he gives the final word, but it looks most likely like continuing will not be an option.  The great news is the brain is still clear.  So I have options available, and the possibility of other trials. 

I will write later, but wanted to let you know.  I'm not super surprised as I have been feeling the growth.  And maybe because I was prepared, I am not super sad.  Ready to finish the summer out strong, and then make some decisions.

big week

Today I go in for scans.  I won't find out the results until Friday, when I fly back to Florida.

I was so hopeful when we started this drug.  Now I'm not so sure.  The armpit in my tumor (I just went to erase that error, but figured that's kind of what's going on here) continues to grow.  I now have some numbness in my upper arm, and it zings every now and then with certain movements  (mostly when I'm loading the dishwasher-should I stop?).  I'm sure it's pressing on a nerve.  And at what point are we going to have to take action (surgery or radiation)?

The rules are that these scans have to show less than 25% growth of overall tumor burden to continue the trial.  I am planning it.  Not sure what we would do if I get kicked off, I guess it depends on where the cancer is (I'm sure anything in the brain will disqualify me as well).

The good news is, there has been no pain since it went away that first dose.  These two tumors in the armpit shrunk most definitely and quickly after the first dose, but have now grown back to original size, or possibly bigger.  I haven't felt anything new pop up.  So that is also good.  Who knows?

I will for sure let you know.  Thank you for all your thoughts and lovely prayers.  I am sorry to have neglected my blog.  I admit to falling into some sort of semi-depression lately.  But physically I feel good.  Tired, but at the end of the day that's hard to complain about.

Mostly I'm just scared.  Sure I put on a happy face while I put Luke to bed, but when he goes to the kitchen for a drink I sob ugly sounds in the dent where is warm body has just been.  My sweet little boys!  And then just as suddenly, I have to pull myself together when he climbs back in.  This is the double life I live.  How long can I keep this up?  And which life will win in the end?

hello

My heart has been quiet for a while.  I wonder what to say when people ask how I am doing.  How has my summer been?  Am I liking the new house?  How are you feeling?

Physically I feel great.  The second dose of AntiPD-1 was supposed to bring on more side effects than the first, so I was a little bummed I didn't feel sick at all.  No night sweats, no chills, no diahrreah.  Other than a pretty strong pull to my bed for an afternoon nap-I felt no difference.  Tumors seem to be stable, or maybe smaller, but not a definite difference from the first dose.  The large axillary tumor is still alarmingly large.  The third dose was completed on Wed. and I have only felt a little chill in my bones and a desire to sleep.

Mentally, I do not feel 'great' yet.  I worry about things.  Well, I don't allow myself to worry about things (like is this really going to work?) by shutting down parts of my brain or something.  I am just numb somehow.  This may be a way I cope with things, but it is not the way I want to live.  I am trying to break away from this pattern, and hopefully will find success.

One year ago they found cancer in my brain.  In 25 spots.  One year ago I was devastated. 

I am so grateful that I am still in this fight.  It's a fight till the death, and usually does not take this long for someone to win.  But I'm holding my ground.  I am praying that science can stay one step ahead of my disease.  If every year I just need some medication to give me another year...

I used to wonder why we prolong our lives.  Why we even offer toxic medicines that are only supposed to give you a few extra months (this is not the case with my medicines so far, as they do have the potential for long term responses).  But every day I get it.  The kids are so funny, and the moon is so wonderful, and the raspberries so ripe.  Anything for more of this.  Even just a little more.

Today I had a plan to blog about all our recent events.  I had Josh take the kids to the rope swing by the river (I cannot get anything done on the computer when they are around-I would much rather be hanging out with them).  I started typing and soon the world went black.  An hour later I was awakened by the slamming of doors and kicking off of shoes.  I had only gotten two paragraphs typed.  The last one talked about my desire for naps.  :)

So hopefully I can stay awake long enough to fill you in here pretty soon.  Thank you for your concern and continued prayers.

breaking news and pain

Last week the pain was getting a little out of control.  This strange, new pain.  Sometimes it just whines at you, and you can demand it stop, or get yourself busy enough to drown out the noise.  You can ignore until you try and do something normal.  For me that was bending over to tie my shoes.  Also walking up stairs hurt.  There was no exersizing because taking in a deep breath was out of the question.  Take a pain pill and all that stuff could be gone.  But then you feel like crap and sleeping anyways, so you didn't do anything.  Those were the choices when the cancer whines.

But sometimes it screams.  Like it wants to get out so bad.  And there is no choice but to silence it.  Because nothing else on earth matters but getting rid of that pain.  You can't see or think past this kind of pain.  It is all consuming.  The kind that puts you into tears.  The pain pills don't bother you then, because you were getting nothing acclomplished without them.  For that kind of pain they give you breakthrough pain meds. 

Besides the fact that the pain hurts, it terrified me.  So far my only symptom of cancer has been soreness in my bones when I put weight on them (over a year ago guys-I now have no cancer in my bones).  It has been the drugs that have made me sick, not really the cancer.  But now here is the cancer taking over my body and mind. 

I have been dealing with this pain for a while now.  It got to the point where I always felt it.  And I often had to take pain pills. 

But Monday morning I woke up feeling okay.  So okay in fact, that this house that we just bought, that I haven't even cared about, suddenly mattered.  It suddenly mattered that I didn't have a couch to sit in upstairs.  It suddenly mattered that I have been sharing the basement bathroom with my boys.  I knew it would someday, mostly because I could tell it mattered to Josh.  He has been working on this house every spare minute.  Luckily his mom knew it was important to him, she has been here working since we moved.  My family has been here often feeding us and cleaning up.  I just couldn't see what all the fuss was about.  It didn't matter to me.  I have been focused on getting my dream drug and getting out of pain. 

But suddenly this week I see the bigger picture.  Last night Josh got the flooring done and we opened the front door to the most beautiful view of the lake and the mountains and the clouds and the valley.  I for the first time was excited about the move.  The move that happened a month ago. 

I smiled and took in a deep breath.  It didn't hurt.  It doesn't hurt.  I have not had any pain pills all week.  Sometimes I feel a little nauseous.  But feeling way better than I did 2 weeks ago.  I have a hard time believing that this drug has worked so quickly, but really?  Is there any room for doubt over here?  This is exactly what happens to me.

Today I keep getting alerts from the annual ASCO (American Society of Clinical Oncologists) meeting which is going on this week.  What is the big study coming out?  A phase 1 study of IPI (Ipilimumab) plus AntiPD-1 (now it has a name-Nivolumab).  When patients are given the maximum dose they are producing a 53% objective response rates (tumor regression of 80% or more).  So incredible.  Seriously.  Those numbers are incredible.  Their conclusion?  "Concurrent therapy with nivolumab and ipilimumab had a manageable safety profile and provided clinical activity that appears to be distinct from that in published data on monotherapy, with rapid and deep tumor regression in a substantial proportion of patients."

Rapid and deep tumor regression.  I am pretty sure that is what is going on over here in Lehi Utah, folks.  Incredible. 

sick and grateful

I have been sick this week.  It's been hard to determine if it's the cancer, the pain pills, or the PD-1 infusion.  Not liking the pain pill side-effects.  Sure not liking the pain.  But strangly loving the things I know for sure are from PD-1.  Like the flu-like symptoms, and especially the severe chills I get in the middle of the night.  I wake Josh up to witness those.  Because that my friends, is an immune response.

I am almost sure that my little tumor in the armpit, that I first felt a couple of months ago, is on it's way out.  The large one?  May be loosening up.  With IPI it took 5 days to notice tumor shrinkage, I think this is even faster.  No major side effects yet.

Wish I had more energy to write about all the things that are filling my mind.  I have spent enough time in bed to get something accomplished in here...  They say the fatigue usually lasts only a few days after the infusion, so let's hope for that.  And for a complete and miraculous response.  :)

Thanks for all the prayers and kind words.  God has been so very good to us.

right now

It's happening!!!