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Initially diagnosed June 4, 2009 Invasive Ductal Carcinoma Stage II,Grade II tumor size: 2-3 cm node positive ER/PR postive HER2 Neu - negative Current Diagnosis: Metastatic Invasive Ductal Carcinoma Grade 3 Mets: Scalp/skin, Liver, Spine, Bone ER/PR + HER2/NEU -

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Saturday, February 22, 2014

Vaccine Trial Preliminary Scans Completed

I just got back from Houston.  I went down to get the preliminary scans done for the vaccine trial I'm interested in doing.  My husband needed to work (he's out of paid time off), so I had to make the trip for the first time alone.  It was a little scary at first, but I summoned that inner strength and was able to get through the day.  If you haven't ever done this alone, you should try it some time.  It's empowering and it makes you really appreciate those who normally go with you.  It also gives you a lot of time to think and process your emotions without interruption if you have to commute a good distance to do it.

While I was down there, my schedule was fairly hectic.  I met the social worker from MD Anderson at 10am and had a great chat with her.  She provided me some information and items for teenagers and dealing with cancer and gave me some forms to fill out for power of attorney and a living will.  After that, I went in for the bone scan preparation.  They inserted an iv catheter into my arm and gave me the radioactive contrast for the bone scan.  I had a little time after this to kill, so went down to the Waterfall Cafe and had some lunch.  

Shortly after lunch, I had my bone scan.  I asked the nurse if I could take a look at it on the screen.  You are allowed to see them if you ask, but they can't tell you anything about it.  I have copies of my previous scans back in October 2013 on dvd and was rather concerned to see a lot more areas lit up than last time in my torso area.  I'm not a radiologist, but I know things lighting up on a bone scan is usually not good when you have known bone metastasis.  I'm hoping I'm wrong, but I have a feeling, the radiology report may show the Xeloda was not working as well on the inside as it appeared to be working from the outside.  This, of course ,causes a bit of test anxiety, but I have no choice but to wait for the official results to be sure.  I just hope they come soon and are better than expected.

Next, I went up to the next floor for my CT Scan Prep.  I was expecting this to be two big bottles of liquid chalk (barium), but they do not use barium at MDA unless you are allergic to iodine.  I am not, so they asked me what flavor I wanted.  I tried to talk them into letting me just take the small amount of required contrast as a shot, but they insisted I had to have a huge 32 oz cup full of iodine contrast, water, and crystal light.  I went with the lemonade.  The nurse noted my flavor on the paperwork.  I asked why she wrote down the flavor I chose and she said so that if I come down next time and say I didn't like that flavor I had last time, they could tell me which one it was.  They seem to cover every little thing like that.  I doubt they'd do that back home at any of the places I've had scans.

After that, I went back out into the waiting room with my cup to wait.  By the time I finished the required amount my back teeth were floating.  I don't like drinking large amounts of water as it makes me feel bloated and miserable.  One of the CT Scanners was down and it seemed like I waited forever.  I was concerned they were going to make me drink another huge cup full of that stuff.  The IV catheter was starting to really bug me, also, and I couldn't leave the area because they might call me.  So, I set up camp and about that time they called me back to flush my IV catheter.  Packing up my laptop and all my stuff, I carried my cup with the remainder of the contrast (they make you save a portion) and followed the nurse to the back. This cup, plus the back pack full of stuff, was really getting heavy and cumbersome at this point!  I was really missing having a second set of hands to help out, and really starting to appreciate those who have gone down there and made things so much easier in the past.  Thank you Jesse and Mom for your assistance in the past!

After the port was flushed out, I went back out to the waiting area and was about to set up camp again, when a nurse comes over and tells me they are moving a group of us to another area because of the ct scanner being down.  I gathered up my stuff once again, and we were escorted, as a group, over to the main building for our scans.  A short electric cart ride later, we arrived at the main building and were escorted through a maze of hallways and doors to another screening area.  We all changed out of our clothes into oversized scrubs, put our things in a locker (thank God!), and went to our assigned rooms.  

After a short wait, they called me in for my CT Scan.  I stared at two large retangular light panels covered with a floral scene, and followed the computer voices instructions as it repeatedly told me to breath in, hold it, breathe.  They injected the contrast that gives you that warm, I've got to pee, feeling.  After the scan was completed,  I was mentally and physically exhausted.  I didn't even ask to see the CT.  They are 3d and difficult to read, so I couldn't have just glanced at it and got any general information from it anyhow.

After all this, I have one thing left to complete, the lupron shot.  This is a shot they give you to shut down your ovaries so they can use post menopausal drugs to block estrogen if you are pre-menopausal and estrogen positive.  I killed a little time, then finally found the ambulatory care area where they were supposed to provide the shot.  I checked in and they gave me a pager like you get a restaurant.  I found that quite entertaining, but enjoyed the freedom it allowed me.  I didn't have to stay in the waiting area because it worked throughout the entire building.  I had about an hour before my actual appointment, so I went down and got some food at Cafe Anderson.  I brought it back up to the waiting area and set up camp.  About 5 seconds after I finished eating, and had my laptop back up and had just started to log into it, the pager lit up and started to vibrate.  It also made a lot of noise.  I wasn't expecting that!  I went back to the back and got my shot.  By this point it was almost 7pm and I was totally exhausted and ready to go!

I made my way down to the bottom floor and waited in line to pay my valet.  I had parked at the other valet and they told me it would be at least 10 minutes before they would have my car.  About 20 minutes later, I was finally heading back to the "Roe"-tel in Pearland.  I was so exhausted when I hit the door I was ready to just fall over.

A good nights sleep and a long 4 1/2 hour drive later, I'm back home.  I'm waiting for the results of the tests to see if I qualify on the preliminary scans.  Another set of scans will be done in another 6 weeks, if I do, and I will have a consultation with the oncologist down there to see if I can enroll.   In the meantime, I get a few weeks off of chemo and plan to enjoy it.  I need to call down there next week and find out when to start the Femera.  I have it filled and ready to go, but am not sure how many lupron shots you have to get or how long to wait after the first one before starting it.  I also have some resources the nurse gave me on local oncologists who either trained at MDA or work well with them.  They say I have to maintain one up here where I live, just in case something goes wrong, and that works for me.  It will give me somewhere to do the routine things like the zometa and lupron shots.  I can get my femera refilled there as well.  

Anyhow, the adventure is over and I am thinking I will get a few weeks of normalcy to recuperate before starting the trial.  If I don't qualify, they'll probably either put me back on the Xeloda (if indeed it appeared to be working on the inside) or put me on another chemo drug until I can find another trial.  I'm intent on going with the trials and not sticking with the FDA approved drugs.  We all know the expected outcome of going from chemo drug to chemo drug and it's not good.  This makes me more willing to gamble, and after much research, I'm leaning towards the targeted and/or immunotherapy area because it may provide a better long term survival rate.  The standard care FDA approved drugs will always be there as a back up, and I can leave a trial at any point if I feel it is no longer beneficial.  If I stay on standard care though, and run out of approved drugs, a trial may not be available to go to at that exact time and I may run into dead end (literally)... this is why I've decided to do the trials as the come up, rather than when I run out of standard care.  


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