Had a message from the study coordinator today to call her back.  When I did she asked, "What do you think your CA-125 number is?"  I said that I didn't know, not really wanting to play a guessing game (wanting to guess lower but thinking that might be too optimistic - or maybe it was right at 70 again).  She said that my number came back at 62!  So lower than my last lab work 6 weeks ago - which was 70!  (This is the first time that my CA-125 number has gone down after it started making its upward climb & I think it completly surprised my group at Huntsman.)  Then she went on to say that my scans came back clear as well!

So even though this is really good news, it kind of puts us in an awkward spot as far as the new study goes.  The study is specifically for BRCA-1 patients who have an active tumor to follow or have a CA-125 number at 70 or higher for two lab tests.  So as of today I would not be accepted into the study.  My doctor recommends that we cancel my appointment for tomorrow and they would like me to come into the clinic in another couple of weeks to have the labs drawn again and see what the CA-125 number is.  If the number is 70 or higher then they can start me on the study drug then.  If it is still below 70 then we will probably enter a watch and wait phase until my number goes back up again or something shows up in a scan.  So I agreed to that and we canceled the appointment for tomorrow - which means I went from two doctor's appointments and an Avastin infusion (which was initially set up 6 weeks ago) - to nothing tomorrow!  (My surgeon's office called last week to say that I would not be able to meet with the surgeon on March 19 but could meet with the nurse practitioner instead.  I said that I would like to meet with the surgeon so we rescheduled for April 2.)  I will go up to Huntsman to have the labs redrawn after my surgeon's appointment on April 2nd.  Now if I could just get rid of this cold!

I woke up this morning barely being able to talk.  My throat has been sore the last couple of days and today it still hurts and now I can't talk very well.  Unfortunately because of my tooth that was pulled, I need to not suck on any hard candy yet which means no throat lozenges for me...  Then this afternoon I had to start fasting for my CT scan.

Originally I was scheduled for the scan in the morning down here at the clinic near my house but I got a call last week from the study coordinator who said that if I was going to enroll in the new study then I needed to sign the consent forms before my lab work and CT scan were done.  So we rescheduled the scan for the downtown location on that same day but the only time they could fit me in was 6:15 p.m. (and pick up my contrast at about 4:45).

Then around 2:45 today I got a call from the study coordinator again asking if I could get there any sooner because they needed to try and get the lab work off to the drug company that day and the last FedEx pickup is at 5:00.  I said that the earliest I could leave home was 3:15 when my son gets home from school and can babysit the little ones for me.  That should still get me to the clinic around 4:00.

So I left as soon as my son got home and got there right around 4:00.  I went to the radiology clinic to checkin and get my contrast drink first and they said that the tech wouldn't bring it down to me until 5:15.  I was a bit confused by that because they have always had me start drinking the contrast 1 1/2 hours before my scan.  I asked the receptionist about that and she said that different radiology technicians do things differently and this one likes to have you start it only an hour early.

So then I quickly went back downstairs to check in at the clinic where my labs will be drawn and where I will talk with the study coordinator.  I told the receptionist that I was there for labs and needed to meet with the study coordinator.  Apparently she chose to just process the first part of my information and only told the nurses that I needed labs drawn.  So after sitting around for almost 10 minutes they finally called me back to the room where they access my port and I said that I needed to meet with the study coordinator before I did any labs.  So after asking several different nurses I finally saw one of the nurses that works with my doctor and she went to let the study coordinator know that I was there.

She came out a few minutes later and we discussed the study and the drug and what it does and I asked her a bunch of questions about it.  Basically this part of the study is specifically for BRCA-1 patients and the drug is supposed to help prevent the formation of new cancer cells and hopefully even kill off cancer cells that have already formed.  It would require me to take 2 pills a day and get labs drawn every 4 weeks with a CT scan every 8 weeks (not too crazy about that requirement).  Unfortunately the most common side effect is nausea which can hopefully be controlled with other medications - not too crazy about that either.  The good news is that I can pull out at any time and for any reason.  So I decided to sign up for the study and then went to have my labs drawn.  The person from the lab that needed to process the blood work was standing right there almost pacing, ready to grab the blood as soon as it was ready.  I still think they managed to not get it ready in time because I heard the study coordinator talking on the phone to someone about it.  Not really my concern though at this point.

So after that I went back to finally pick up my contrast drink and the study coordinator came with me because she still needed to get an EKG test done on me before I left.  She asked the receptionist at the radiology clinic if there was a room they could use there for it but she said we would have to ask one of the radiologists.  So after they finally brought me the contrast drink we went back down to our clinic and she took me into a room and called someone down to run the EKG test.  They had me lay down and put about 12 different little tapes on me on different areas of the body and then hooked them up to the machine and it took about 2 minutes - pretty painless.

Then I was finally ready to go back to the radiology waiting area and had not quite an hour to wait for my scan.  Once they called me back for that it was pretty quick.  I have learned to wear clothes that have no zippers or metal anything and then I don't have to change at all and they just have me lay on the table, hook up my port to the dye contrast and then start the scan.  Afterwards I had to go to the after hours clinic to be de-accessed.  Talk about running around today!!

Yesterday was a crazy day where I was on the go all day long.  Luckily my jaw hasn't bothered me too much and I have been able to deal with the pain with just taking over the counter ibuprofen.  I can definitely tell when it is starting to wear off though!  Today I am trying to cut back even on that but I am not quite ready to go off of it completely.  The first few hours after my surgery it took a while to get the bleeding to stop.  I kept the gauze in from the surgeon's office for about an hour and then took it out and it started bleeding again so I had to put some more in.  I kept checking it and I thought I was doing good and then I would feel it starting to bleed again.  Keeping the gauze in was a pain though!  It finally stopped bleeding right before I went to bed.  I'm wondering if the Avastin helped contribute to the bleeding.

I am still not able to eat too much - just mostly soft things - which sometimes are not very filling!

Had my tooth pulled by the oral surgeon today.  It was pretty quick and I was home within an hour of my leaving home.  My favorite part was a comment made by the oral surgeon while trying to extract the tooth.  He said, "Wow!  You really know how to grow roots!"  Apparently my roots were pretty long and hard to extract.  Now on to the healing part...

Got a call from the study coordinator at Huntsman yesterday asking if I had looked over the info for the new study that she had given me at my last appointment at Huntsman.  She said that they need me to look over and make a decision soon because our location has only been given 2 spots for the study and they need to fill them quickly or those spots may be taken from them.  She said that the drug is in high demand across the country and right now is only being offered to people through studies like this one since it has not been FDA approved yet.  The study is for a drug called Velaparib and is a PARP inhibitor.  I need to look into it more and make a decision soon...