Tuesday, April 30, 2013

business or pleasure?

The trip was a success!!  I am on the schedule for starting the drug on May 8th (assuming I can work out my insurance issues, which are still up in the air).  I will go back every other week for a quick appointment and the drug infusion (which should only take about 90 minutes).  In three months we will scan and see if it is working or not.  Of course it will be working, so we will do the same routine for another 12 week round.  If (when) I am still responding I would go every 12 weeks for 2 years for the medicine.  I originally thought it was every other week for a whole year, so 6 months was a nice surprise.  It's a small price to pay for possibly the best medicine melanoma has seen yet. 

From what I understand the response rates are around 25% or better.  It is drug very similar to Yervoy (IPI) that I responded to so well to in June.  It acts just the same way, but uses different pathways.  Pathways that aren't showing the same side-effects as IPI, and the side effects are generally less severe.  This is the first trial of this drug that would let me in because of my side-effects from IPI.  This trial is to see how patients who had dose-limiting toxicities with IPI (remember I could only take one dose of the four you are supposed to receive because of the colitis) would do with the anti-PD1.   It is a very exciting opportunity.  This is the same drug I tried to get in Portland. 

It will be very interesting to see what happens.  Will I respond quickly, as I did with IPI?  I hope so.  I have now lost some range of motion in my arm due to my growing tumor.  It hurts when I stretch, reach, and is very obvious when I swim.  The pain is above the tumor, and it feels like a tendon or something has just been pulled too tight, and has no more give.  So I kind of need it to work quickly. 

In the meantime we need to move!  We close on our house today, and have to be out of this one by Monday.  So ready or not...

Just found out I qualified.  Sitting on the softest beach, watching the sun go down and the moon rise.  It was a good night.

Nothing more romantic than the ocean.  Even if I was alone.

Wednesday, April 24, 2013

good to go

everything went well today in Florida.  Alisa will come home tomorrow but is likely in the trial and can start soon.


I would elaborate, but I don't have the skills for the blog.

Monday, April 22, 2013

cleared for takeoff

Brain looks good.  I fly out to Tampa tomorrow for my appointment on Wednesday.  I will be alone so I must be brave.  I prayed to try everything, and here is my chance. 

Thursday, April 18, 2013

check it out

My nephew was on almost all of our local stations yesterday.  How cool is that?

Wednesday, April 17, 2013

plan a

We have decided to try the Florida trial first.  I will keep my appointment there on Wednesday.  I will have a brain MRI this week to make sure all is good there.  All we need is that to remain clear, and the stars to align.  Not too much to ask, I hope.  In the case there is something in the brain, we will likely treat it like we did last time it showed up there.  If the brain is still clear, but I don't qualify for some reason (there always seems to be some reason), I can come back and be re-screened for the injection trial here.

So sorry for the unanswered calls and messages.  They have meant so much to me.  I haven't felt like talking much, or explaining a situation I barely understand.  I can understand the need for 'space' during certain crises.  Required partially because it is hard to add others' anxieties to my own.  These last couple of weeks it seemed quite impossible. 

But it's over.  We have a plan.  I am finally smiling inside again.  

Monday, April 15, 2013

as of today

We are still waiting on a few pieces of information.  It is a long and complicated.  It gets longer and more complicated the more I find out.

Bottom line is, I have an appointment to see the doctor in Tampa on the 24th (to get on the waiting list for the pd-1 drug).  I also have an appointment to get this large tumor injected with a modified cold virus on Thursday (the trial they are doing at the Huntsman).  It looks like I can't do both, and either one is going to require another brain MRI. 

We will be making a decision by Thursday likely, either way.  I thought this was a pretty big deal until I heard the news from Boston today.  Some things (most things) aren't really that bad. 

I will keep you posted.

Monday, April 8, 2013

follow up

Josh read my last post this afternoon and claims he 'lost it.'   Said that he doesn't like to see everything in one place.  "I can take one thing at a time."  Like he had never lined up our troubles, and certainly never added them up.  Surprising, the way he can compartmentalize.  To me everything is always all together, right in front of me.  I even include the weather in the mix of how the day is going.  Sometimes it seems like a beautifully orchestrated movie, and sometimes it just seems like a mess.

Communicated with the doctor today.  He is trying hard to get antiPd-1 one way or another, and if that doesn't work come up with a plan b.  My job now is to be patient with the process.  Okay.  I can do that.

Going ahead with the house.  Josh is excited about it.  I am trusting him on this one.  Not worried, honestly.  It's the other things we have going on that are going to give me an ulcer.  

Rainy Monday afternoon with a tumor in my armpit and a poodle on my lap.  I had been crying and Josh snapped a picture of the pathetic scene.  I felt immediately better when the boys got home.

super glue

The drama of this week!

Here is a little breakdown of some events:

Monday.  After three days on the market, a ton of interest, and too much cleaning, we get an offer on our house.  I am happy with the buyers, I always saw a young couple here. 

I talk to my nurses and nurse practitioner.  I explain that I am having severe anxiety over the new cancer.  I am not feeling good about the injection trial since I have cancer in other places.  I make a case for doing IPI again.  My doctor is out of town this week.  He will check in in the middle of the week.  I explain I can't find a PD-1 trial in the West that I qualify for (I had been researching and calling around.  Very time consuming).  They mention the one in Florida that my doctor has talked about with me before.  We had reasoned that with nothing new showing up (we didn't know about the new tumors yet) this may be extreme (it will require a trip to Florida every other week for up to a year).  Well now that there is some new growth, I am seriously considering it.  It is with the PD-1 drug that I tried to get in Oregon.

We get the inspection report back from the house we are in contract for.  There are some major repairs we were not aware of.  I was surprised, and got a little nervous.

Tuesday.  I get a hold of the doctor in Florida who is conducting the PD-1 trial for people who have had dose limiting side effects from IPI (that would be me).  I give him some background info and he thinks I may be a candidate!!!

Wednesday.   We fax some of my records to Florida.  Or try, rather.  The faxes were not making it through and I had to keep bugging people.  I hate it when I get that way, but it has to be done. 

Thursday.  Josh convinces me to do something fun for spring break (tragically, we had a beach house on the Oregon coast all lined up for this week with my sister.  I have almost sworn off ever planning a trip again, as they all seem to get ruined by cancer).  My kids had been with their grandmas a ton while we were showing the house, and I hadn't seen them enough.  I was happy to be in the mountains again.  But all the time I'm stressing.  Checking my email all the way up the lifts.  Waiting for word from Florida.

Friday.   Florida gets my paperwork.  My heart sinks when the doctor explains a blood test that was ordered a couple of weeks ago came back to show I was HLA A2 negative.  The type that is not allowed on their trial.  He is in the process of amending the trial to include those of us without this antigen.  But that won't take place for a few weeks, and then there are 5 people on the waiting list before me.  I can't get on the waiting list until I am seen by him, and even then there are no guarantees, but he is guessing if I qualify I could start in about 6 weeks.  As much as I tried not to get my hopes up, this was a disappointment followed by great and noisy sobs.  So, so close!!

I decide to check my armpit tumor to see if we can wait 6 weeks.  HUGE.  Feels like a golf ball.  When did that happen?

I go to bed, but feel nauseous and in serious pain.  These kind of symptoms will drive a cancer patient crazy with worry.  I take everything I have in my medicine cabinet, which is next to nothing as I have packed everything away.  No pain pills, so I tough it out.  Even with anti-nausea meds I end up tossing my cookies.  I finally fall asleep around three.  Luckily, no problems since.  Most likely just a stomach bug or something.  Or a serious reaction to stress.  I would not be surprised.  One of my biggest anti-cancer lifestyle goals over the last two years has been to minimize stress.  Not succeeding in this right now. 

Saturday.  I wake up early to get the house ready for the inspector to do his thing at our house, and for our buyers to come back and get the full report.  Keeping your house spotless is kind of a joke.

We hear back from our sellers that they are willing to offset only a portion of the repairs.  This has me in a complete meltdown.  I can't understand why this could not have been a smooth situation, given everything else we are in the middle of.  We now have to decide if we go through with this, knowing we are going to have to fork out the cash we were going to use on some necessary and some cosmetic changes.  But if we don't do it, we did just sell our house (we didn't really think this out so great, did we?), and there is not much on the market right now.  And location was our big thing.   It is in a great place for the kids...  We have to respond by this afternoon.

So, you know.  Just life and death decisions over here.  Just deciding what to do with all our money.   Everything up in the air.  All this week.  And it seems only to be escalating.

The crazy thing is, it looks like I'm holding it all together.  But honestly I feel like these days are all just jimmy-rigged and could fall apart at any moment. 

Somehow it hasn't happened yet.  And maybe if I can hang on long enough...