Tuesday, January 31, 2012

I Chose Option 3

Yesterday I sent email to let Nurse Jenny know that I want to do the Phase 1 clinical trial at Duke.

When I get home tonight I will look at the paperwork and tell you which two drugs are in this trial.

I found out that I will be in the "expanded cohort," which means I'll get the maximum dose and have 3 sets of skin biopsies instead if 2.

Lou was pretty funny about it. He pointed out that it cannot be as bad as ifosfamide last summer! So true.

Right now I am waiting for PT... Afterward I head to the office.

Sent from my Verizon Wireless Phone

Saturday, January 28, 2012


Today we see Memphis at the DPAC! I see on the web that it is loosely based on the true story of the first white DJ to play black music on the radio, in the 1950s. I am pretty excited.

The pain in my back is greatly reduced, so I think that bringing back one Celebrex per day is doing the trick. Since I couldn't get 100% off the Celebrex, I am moving on to the next drug on the list, neurontin, and starting to reduce it as directed by my doctor.

I am really leaning toward option 3, because that is the one Dr R is excited about. But I have to finish reading the paperwork and talk to Lou.

Friday, January 27, 2012

Had a Good Cry Last Night

Thursday night is poker night, and Lou was next door at Nick's with all the guys. So Bailey and I had the house to ourselves. That hardly ever happens!

I had a good cry, which Bailey didn't really like. She sat next to me, and then ran off, and then came back again... But the thing is, I must have needed it, because I woke up this morning feeling a lot better, emotionally. 

My back, however, is bothering me again. So if you see me walking around hunched over, that's why.

We are going to choose an option this weekend. There is too much happening today for a decision.

Ha, I was going to write "an informed decision" but the part that gets me is, these decisions aren't all that informed. Not a lot of info available, at least not the kind of info that I want.

Thursday, January 26, 2012

Bad News Piled Up Yesterday

The initial bad news yesterday was a shocker. We'd been expecting good news. I feel great, and we'd never gotten bad news so soon after starting a chemo.  So we weren't prepared.  I had thought about trying to convince Lou to stay home. I hated the idea that he was wasting his time, coming to this routine appointment with me.

Once I realized it was bad news, we started talking pretty seriously about what my options were. That was complicated, trying to decide what to do next. Didn't leave a lot of room in my head to feel sorry for myself.

More bad news came later, though. After we got home, we talked to a nurse on the phone, who was reading things off the CT Scan report that we had not talked about with Dr R. Like, the tumor in the pancreas is now much larger and outside the pancreas and "infiltrating the liver." That can't be good.  And there is a new mass, down near my bladder that is about an inch.

I was upset last night and had to set it all aside after surfing the web for awhile. But I did get to talk to Dr R today. He thinks that the tumor is not infiltrating the liver. To him, it seems to be pushing up against the liver. In general, sarcomas don't infiltrate organs. And if a tumor does infiltrate, it typically does so with finger-like growths. And my tumor shows no finger-like growths.

Plus, he said it wouldn't be so awful if it were infiltrating, because the liver is pretty big. But that sounds like not worrying too much if there are mice in your kitchen, since your house is pretty big.

Here are the three options:

  1. Clinical trial of Dacarbazine vs Eribulin
  2. Clinical trial of Dacarbazine vs Yondelis in South Carolina
  3. Phase I clinical trial of two other drugs together 
There is some strategy in choosing the next treatment. If I choose option 1, then I can never do option 2. I can get Dacarbazine at any time (it's an older chemo drug well established for LMS) but then I can never do options 1 or 2.

We were leaning toward option 3, but there are some yucky requirements for the clinical trial, like multiple skin biopsies and tumor biopsies. Option 3 does not sound fun. But Dr R thinks that it is an exciting combination of drugs. I cannot remember the names of the two drugs. I have a whole big handout on option 3 but I don't feel like going to get it.

So right now I don't know what to do. this is the most difficult time, trying to decide.  Once I decide, then it is much easier. I have a goal, something to focus on.

The thing is, there is no guidance on which one will be more effective for me, and which one will be easier for me to endure. So it is a crap shoot.

Wednesday, January 25, 2012

Bad News

So the lovely easy pleasant pazopanib chemo is not working.

All tumors grew.  Bummer. The one in pancreas grew by 20%.

Three options... More details to follow.

Sent from my Verizon Wireless Phone

Tuesday, January 24, 2012


What an amazing appointment.  Everything was fast fast fast.

I cannot believe that I am done.

Gonna head back to the office... And I'll try not to think about this again for the next 18 hours.

Results at 9:30 am.

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I am at Duke

Just got here for my scan. I am hanging out in the waiting room, waiting for them to draw blood.

There was a huge lineup of cars on the way into the parking garage because someone was waiting for a car to pull out so they could take the spot.

We were waiting and waiting... I finally started watching the clock and another two minutes passed. People behind me started beeping.

It was sort of funny.

You have to assume it was a patient getting into that parked car, moving awfully slowly after getting some kinda treatment. No wonder it took forever.

I always zoom to the top of the parking garage because there are lots of empty spots up there. To me, its crazy to waste time trying to squeeze into a spot on a lower level.

I rode down in the elevator with two like-minded folk. I think the woman was one of the beepers.  She claimed she was about to throw her car into "park" and walk up to see what the holdup was!

Okay, I'll admit it. I beeped my horn too. Two short cheerful toots.

Sent from my Verizon Wireless Phone

Monday, January 9, 2012

Happy in the New Year

Hey y'all I am doing well!

I should have updated you sooner. I apologize for being lazy.

The combination of the new drugs and new PT activities has helped tremendously:

  • I sleep through the night, every night!
  • I am rarely in pain!
  • No more tears! 
  • No more plans to chop off my left leg!

I haven't had to take any narcotic pain killers in like a week, which is super awesome. I am taking Lyrica, Neurontin, and Celebrex... with an occasional dose of extra strength Tylenol thrown in.

PT has been excellent, but the effects last three days. I have three sets of exercises I am supposed to do on my own at home. I am not all that compliant.  One exercise, which Lou has to help with, I do like clockwork because Lou is involved. But the other two exercises, I am sort of spotty on. Probably if I did them as directed, things would improve. I MUST DO THEM!

OK, got to get back to work now.