Friday, March 16, 2012

Houston, we have a problem.


Oh man, look at all those cowboy hats!!!
I've been trying to think of a good way to write about Houston.  Sometimes it's easier to write to a friend then to write to a blog.  So here is a letter I wrote to my friend regarding my plans in Houston.

I am still getting PRRT somewhere.  It's still ridiculously expensive.  But it might not be in Houston.

So yes, Houston. They called me on Thursday night to tell me that they had some issues with the radio isotope and would be waiting for a new batch to be manufactured. Since that happened on the 7th, and they won't get the new batch until the 21st, that means that they have a 3 week backlog of patients that they need to do treatment for starting on the 21st. And that's if the new batch comes in and passes inspection. They said I can come the week of April 1st-14th, and they are going to be adding an extra treatment day. They normally do treatment on Weds and Thursday, but will now be doing Tuesday as well. In addition, they will be doing longer treatment days, having their techs work two shifts a day instead of one, or something like that.

I'm sort of a believer in signs, and wondered if this was the sign for me to seek other options. I made my parents apply for a passport while I was home, just in case Europe became a better option.

Then on Monday, Dr. Doom and Gloom's wonderful assistant had to email me some test results. In the email, she told me she had a patient who had just returned from Basel, Switzerland and asked if I would like to talk to her. (This was with her not knowing about the change at Houston...)

I spoke with the woman for about 30 minutes yesterday, and her experience sounded easy peasy. Basically, you get the treatment and get released 2 days later. She flew out of Philly on Tuesday, got the treatment Thursday, and flew back on Sunday. (!!!!!!!!!!!!!!!!!!!!!!!!!!!!!)

Although she is a pancreatic neuroendocrine tumor, not carcinoid, her metastases sound eerily similar to mine (so much so that I got paranoid that Dr. Doom and Gloom paid her and told her what to say!!!)

So I called Doom and Gloom straightaway to get the ball rolling on Basel.

There are two places in Europe that we all talk about...Bad Berka and Basel. I wanted to go to Bad Berka for the following reasons:


1. It's "the place' to go.
2. They have a Ga-68 scanner which shows you EVERY TUMOR.
3. Dr. Doom and Gloom wanted me to go to Basel.

However, as my mom said last week, "Just because he wants you to go there doesn't mean it's a bad place." I just tend to associate him with bad things.

Also, I learned from the woman who just got back from Basel, that they do have a Ga-68 scanner there now. In addition, she was originally scheduled to go to Basel at the end of January, but fell under the "Bad Berka is the place to go" spell and tried to get in to their program by sending all her stuff there. SHE STILL HASN'T HEARD BACK FROM BAD BERKA. After not hearing back from them, she went to Basel like on a moment's notice.

So, I've been weighing pros and cons. Basel is really coming up on the pro side of things. The main reason I didn't want to do Europe was because I don't like to fly. If I go with Houston, I will have to fly 8 times round trip (16 flights!) over the next two years. 4 times for treatment, and 4 times for follow up. Europe is likely 3 trips at most. And no obligation to return for followup.

Also, I did heavy research into the tourist/travel/ awesomeness of Basel, and forget getting treatment, I just want to move there! It sounds like one of the coolest places around! And they have a live webcam that I may or may not obsessively be watching.

Basel Webcam

So I'm waiting to hear from Basel, and I still have Houston available to me if need be.  Choices are good, right?  If only I had listened to Doom and Gloom back in December, I could have saved myself a lot of trouble and had a round of PRRT under my belt by now.

EDIT:  Oh crap.  I forgot that Basel uses DOTATOC while DOTATATE is the preferred form of Lu-177 to use because it resides in the tumors longer.  Ugh.  Read all about it here in this easy to understand journal article.  Sadly, I understand this article all too well.  Damn damn damn.

1 comment:

Jess said...

We're totes moving to Basel.