Monday, August 19, 2013

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.

Friday, August 9, 2013


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.

Wednesday, August 7, 2013

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?