Got a call from the study coordinator who apologized and said that she needed me to come back in because they hadn't drawn all of the labs that were needed for the study...  She apparently had been out sick for a couple of days and completely forgot to inform the lab that I needed the extra study tubes taken as well.  So I will be headed back in tomorrow morning.

For the first round of the study drug, they draw labs at the 2 week mark just to make sure that everything still looks good after being on the drug for 2 weeks.  So I went in in the morning for the lab draw and it was pretty straight forward.

So I went back into the satellite clinic to take some additional mammogram images.  After having the images done and then meeting with a doctor who did an ultrasound as well, everything appears to be fine and normal, thank goodness.

Today I took the kids to the Tracy Aviary and when we were about to leave to return home I got a call from the nurse at Huntsman saying that there was something slightly abnormal looking on my mammogram screening and they want me to come back in for some follow ups to make sure it is nothing.  Not quite the news I was wanting to hear at this time...

I think I am finally getting a handle on the nausea.  This third medication is definitely helping and I am able to eat again.  This morning I went in for a mammogram.  Nothing really to report there.

So by the time Thursday rolled around I was feeling really, really sick.  All I could do was lay around on the couch and sleep.  I had no desire to eat anything and had no energy.  I was also having a really hard time getting myself to even want to take the study drug.  By this point I have tried two of the three nausea medications that I was given and neither seemed to do any good other than to make me constipated.  This morning I emailed the study coordinator to let her know what was going on and that I wasn't sure I wanted to continue on the study if it doesn't get better.  The nurse practitioner called me back shortly after that and we talked about some things we could try.  She had me get the last prescription filled and said to take it 30 minutes before I take the veliparib.  She also decided to send me down to the clinic to get some I.V. fluids with anti-nausea medication as well.  My kids were off-track at this time so I was able to leave them home and go over to the satellite clinic.  After some problems with the nurse not quite knowing what she was doing with using my port things went fine and I was able to get the fluids and I felt quite a bit better afterwards.  I also was given a prescription to take at night that is supposed to increase my appetite so I will feel like eating again.

By this point in the week I had skipped out on mutual on Wednesday night and ended up canceling soccer practice on Thursday.  I also was supposed to teach a combined YW lesson on Sunday but found someone to trade with me so I can concentrate on feeling better.  I had been contacted by my relief society president on Thursday morning so I emailed her back and let her know what was going on as well and we decided to have a few meals brought in until I felt better.  So she brought the first meal that night which was a great help.  My poor husband has been going to work and then getting home around 6:15 in the evening with me on the couch, the house a mess and the kids hungry.

Last night I started feeling a little nauseous.  I feel like I need to try and keep something in my stomach at all times or I will start to feel sick.  This morning I went to the grocery store and was feeling alright but not too long after I got home I started feeling sick and ended up throwing up.  After that I felt a little better but then later that evening I didn't feel well at all.  On Monday the doctors gave me 3 different prescriptions to try in case I get nauseous.  So I went and filled the first prescription and tried taking that.  It didn't seem to make much difference.

Started my first doses of Veliparib today.  I went in to meet with the doctor and have some labs drawn. They also did another EEG of my heart (for the study).  I took the first dose after the appointment and so far feel fine.  The most common side effects are nausea and lack of energy.  They said that it side effects usually come within the first few hours of taking the first dose.  I will be taking two pills twice a day.

Got a call from the study coordinator this afternoon.  My CA-125 number has gone back up again and I qualify now for the study.  My number went up to 77...  She asked if I still wanted to do the study and if so, if I could come in on Monday to draw some more labs and meet with my doctor.  After that she will give me the veliparib to start that day.  I was a little disappointed that my number went back up.  I was hoping that there was something else causing my number to go up and now it was going to go back down to normal.

So I will be going in on Monday to meet with the doctor and get started on the new study drug.  Hopefully I don't get any side-effects from it.  They say that I should know pretty quickly if it will cause nausea or tiredness.

Met with my surgeon today.  I asked her about the veliparib study that I may start depending on my CA-125 number today.  She said that it is probably a good drug to go on because it has showed some good results, especially for those that are BRCA-1 positive.  She is hopeful that my CA-125 number will not go back up though.  Other than that everything looked fine for my exam and she is fine waiting 6 months to see me again- unless something progresses with the cancer.

After my appointment I drove up to Huntsman to have some blood drawn for the CA-125 test.  I will find out results from it tomorrow.

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...

I went in today for a consultation with the oral surgeon on having my tooth pulled and an implant put in.  It was a really weird visit because somehow he was under the impression that we were going to pull the tooth today.  He came back to talk to me for a minute and then said something like, "Okay, let's go back and get you numbed up."  I stopped him and asked what he was talking about and he said, "Isn't that what you are here for."  I said that I thought I was coming in just for a consultation because I have had some recent health problems that may affect my treatment.  So I told him about the cancer and the Avastin that I have been on and he did express some concern with the Avastin but said that the only thing they can do is to keep an eye on the jaw and treat any infections that come with antibiotics and oral rinses.  He also feels that it would be good to pull the tooth first and give the jaw a chance to heal and then if that heals well we can look into putting in an implant at a later date.  The tooth is far enough back in my mouth that I don't think anyone will even notice unless I show it to them.

I still want to wait a few more weeks if I can before I have the tooth pulled so I went ahead and scheduled an appointment for March 11.  DH isn't too crazy about just having the tooth pulled but at this point I think it is the best option for me and I think that if I can get it done in between any kind of cancer treatments then it is probably the best time frame for me as well.

M&M had late start for school this morning because the juniors were taking the ACT test today.  It ended up working out nicely because I was scheduled to go in and have my port flushed so she was able to stay home and watch MJ for me.  I was originally planning on just taking MJ with me since it was going to be a really quick visit.  (I'm not sure if they would have liked that or not though.)

I was only gone for about 30 minutes which was really nice.  I checked in and they called me back after a couple of minutes and I was in and out of the infusion room in about 5 minutes.

After talking with the study coordinator and nurse at Huntsman, we have decided to pull me from the Avastin study.  I would most likely be pulled from it anyways after just one more infusion and I think I need to get my tooth taken care of while I am not on it anymore.  I have been kind of expecting it but it seems kind of weird.  I have been on the Avastin for over 2 years now.  Since I won't be going in in 3 weeks for my regular infusion I had them setup a time for me to go to the clinic in Daybreak to have my port flushed.  It needs to be flushed about every 4 weeks to keep it functioning properly.

My infection has cleared up and I take the last of the antibiotics today.  Now I just hope the infection stays away!

I called the dentist's office today to ask if I could get a prescription for an antibiotic.  They called one in to the pharmacy today and I picked it up and started taking it.  Hopefully it will clear up the infection quickly.  I also called the oral surgeon's office and set up a consultation for an extraction and implant.  And of course the way that the specialists work is that the earliest they can get me in is February 27 - which will be at about my 3 week mark from my last infusion.  And they won't even do anything most likely for another couple of weeks after that.