The CT that Makes ya Feel Dirty...

Okay so not so much, but I was surprised that I'd forgotten how much the CT scan infusion liquid makes you feel like you're slowly filling your pants as your body warms up during the intake of x-ray enhancing chemical goodness :)

If you haven't had the joy of a personal CT scan, basically they warn you about the sensation before administering the fluid.  But of course then I'm thinking to myself... "I sure as heck hope I'm not having one of my Gleevec enhanced bowel reactions while preparing to slide into the gleaming white electro donut of medicinally focused internal sight!

Of course they're right, and you get to maintain dignity as you pull your pants back up while the awkwardly embarrassed technician looks away... cause apparently they never have to ask other patients to drop trousers?  And I made sure all the goods were covered, and the underwear were clean too!  hmph :)

Scan Results Say - no new growth to be seen, so it's a stable result with no reduction or change*

* According to Dr Curti, the radiologist read the scan results differently than he does, and in comparing the two scans, the radiologist felt there might be a slight growth in some mets.  Dr Curti chalks this up to not seeing this and the previous scans from the same angle and, from his perspective, there was no growth.  I'll run with his perspective.  Something about their looking from a 130% angle and how he prefers a perpendicular (90%) view?  Yeah it sorta made sense to me too :)

I'm now in the middle of the fun that comes with getting my life insurance disability renewed, and being dumb enough to think all of the paperwork they mailed to me all had to be dropped off with the cancer clinic.  Apparently they needed me to fill out the exact same stuff I provided last June with regards to how my cancer impacts me, and what my income is.  So I'll be getting another letter with that part to provide - I feel less than bright.

Of course... They already know my income since they're providing it.  So what the hell?  Anyway, whatever, I'm grateful to have their service, and it was me who didn't look over all of the paperwork so wah.

And I must thank my friend JaneAnne from my college days for a fun lunch hang between the un-self soiling CT scan, and my appointment with Dr Curti later in the afternoon.

Oh and for those keeping score on the Gleevec rejections, I have 3 so far - 2 from Blue Cross, and 1 from Aetna/CVS.  Dr Curti and my case worker plan to file an appeal.  This is likely from my indication that not having a balanced rejection file would mess up my perspective on properly administered cancer medication.

Actually, I would love to be a fly on the wall, if Dr Curti speaks to whatever "expert" they trump up to explain why a C Kit mutated Mucosal Melanoma patient isn't appropriately treated with Gleevec after responding to it for close to a full year... as he's like an Indiana Jones level expert vs. "top people" from a non-descript office.

I'm Not Going to be a Test Participant (for now)

After having a lovely chat with the researcher in charge of the new Melanoma test treatment, we mutually agreed that I was not an ideal candidate for this early testing run.  The primary reason being:

• I would have to halt use of the Gleevec for 30 days prior to starting the test treatment.  As this is a phase 1 test, they have to eliminate anything that would potentially muddy the results.  It just doesn't make sense for me to stop a treatment that has kept my condition from worsening to try an unproven treatment.

There are other reasons as well, as they typically focus on candidates who don't have anything working at all for their treatment.  So people who have tried the IL2, Yervoy etc. and haven't had real progress. The study has room for 6 people, and it wouldn't be right for me to take the place of someone who would immediately have a greater need.

Here are some basic details of the study for the class:

• Total participants will be 6 (2 groups of 3)
• The first group will be treated and observed over 2 months
• The second group will receive twice the dosage (amount somewhat depending on the effects seen with the first group)
• This is a combination of two immune system drugs:
•  one which increases killer cell production (white cell cousins).
• Some cancers can turn these cells off, melanoma in particular
• another which inhibits the ability of the cancer cells to affect the killer cells, thus keeping them effective and functional for your immune system

So for the time being, I'll be staying with the Gleevec and still have my planned scan on the 26th.

On another Gleevec related note, my new case worker tried to get approval for the insurance to cover my medication and I now am the proud owner of a second rejection letter... As long as it's still something I can buy myself, I'm not upset about this.

Happy Thanksgiving Folks... 

Scan for Turkey and Stuffing

Just a quick update - I just heard from the scheduling office at the clinic up in Portland.  They thought it would make more sense for me to have my scan in the morning on the 26th, and then to have my meeting with Dr. Curti later that same day.  The original plan was for me to get the scan on the Wed of the week prior and then drive back up for the Monday so I could enjoy the Thanksgiving holiday here with Ki and or friends.  Ki will still be able to be down here so it doesn't really impact that schedule.

Also we're going to do a CT scan rather than the PET, which I would expect means Dr. Curti is looking for minute changes in the size of the cancer cells rather than metabolic activity.

Also, I've been experiencing some recurrent bleeding lately that reminds me a bit of last year prior to needing to have my original tumor area re-operated upon.  The good news is it's not as significant in volume, nor in discomfort, so for the time being I think it should be okay to just go with the CT scan as Dr. Curti will be able to see if there is any new growth to a finer detail vs. the fuzzier PET scan.

So I'll be getting my turkey on and sleeping the dreams of the well fed a few days prior to heading up to check the body.  The good news being the CT scan doesn't take as long as a PET, so I can potentially have some lunch in town, which would be nice.

more to come.

Fall and Back in So. Oregon

On the health front:

- I called the oncology clinic this week to see if the test treatment mentioned previously was happening, and that hasn't been finalized and scheduled yet, so I'll have to wait to see if they include me.  My insurance case manager etc. informed me that my coverage includes FDA approved cancer medicine testing, so I made sure they were aware I had that benefit.

- As far as currently planned, I still will have my next PET scan in a few weeks, but we haven't had the date for the actual scan confirmed, since I guess the insurance takes some time to respond with confirmations of coverage etc.  My meeting with Dr. Curti has been scheduled for the Monday after Thanksgiving however as his schedule does fill up quickly.

- Also my insurance company decided they hadn't received the request for my last PET scan prior to the actual scan, and therefore only paid for half cost.  As these scans are a few thousand bucks a pop, they were expecting me to pick up half.  Fortunately the clinic up in Portland never schedules without getting prior insurance authorization, and my case manager has the pre auth code the insurance sent before the scan.  I guess this is what can happen when you have a third party company employed to handle billing (Aetna and Meritain)...  In the meantime, my case manager is taking this task on herself, as she has the pre auth they claim to never have sent. 

As for other bits:

The weather has definitely changed hard to Fall here in Oregon.  I was in Arizona a couple of weeks back visiting my wonderful mother and sister (also wonderful :), and there is quite a contrast in temperature.  This was a great trip where I took advantage of being able to drive down and make a couple of stops along the way (I used to drive a fair bit during my college days and my first few years here in Oregon, so road trips have a certain nostalgia for me).

First stop... Yosemite, which marks my first visit to the park, and of course I pick the day when it's cloud covered and drizzling.  What can you do right?  Still, what a beautiful place.  I managed to take some pics, but with the weather being unsupportive, and me being still out of shape, I opted to just stick to the main valley.  My route was in question though as I'd planned to drive by Mono Lake and the pass being over 9,000 ft had been closed the night prior due to snow.  

Fortunately, I drove through the pass around 2 pm so the temperature was a balmy 37 degrees!  

Frankly I'm tempted to say never go to Mono lake so it can stay a great secret for uber cool photos... But that would be most uncool, and since I'm gonna post a panorama shots of it I guess the only thing to say would be, there's not much else there?  Except German tourists... They seem to really love the Western dessert states.  Must be a John Wayne or Roy (and Ginger!) Rogers thing?

The final trip bit would be... taking the time to go down the "extraterrestrial highway" in Nevada (it runs alongside Area 51, is pretty much not so cool.  I had hoped stopping at the sites along the way would be fun, but there was pretty much nothing more than a couple of touristy souvenir shops selling t-shirts and mugs.  Plus the more famous of these was so loaded with bumper stickers about how much they hate President Clinton and how no one is going to take my gun etc rather than fun things about the area, that I kinda wasn't into the experience.  Maybe I should have purchased some of the "Alien Jerky" that was advertised, but I figured it would likely be elk or deer meat rather than true Orion flesh, and you know once you go green...

I've dropped a few more pounds, but the traveling kinda put a kink in the exercise plans for that time.  The goal is still to get the rest of the lbs gone, but I'm being realistic about my body's resources and realizing it will just take time.

Ki is doing well, and I just returned from seeing him, so it's been a real whirlwind of traveling, coming home for a week (and dressing up as a voodoo guy for a halloween party) and such.  I'm glad to be home for a bit.

So here are a few shots from the trip - I'll have more to share on my flickr account after I get the old pics from Hawaii processed: