Went online to find out my latest CA-125 number and it has now dropped to single digits! My count is at 9 right now!

Met with the nurse practitioner today because my doctor is out of town. I haven't seen the NP in several months - I was beginning to wonder if she still worked there! Everything looked fine with my labs. The NP mentioned that another similar drug to the one that I am on was just FDA approved for treatment of BRCA-1 patients. I need to ask next time if that means I could go off of the study and start taking this new drug. Then maybe I could stop having scans so frequently. It would be worth asking about at least.

Got a call from the study coordinator today with some good news - the doctor said it was an early Christmas present for us.  They just got word from the drug company that is conducting the study that I am on and they have finally agreed to pay for some of my CT scans - we should only have to pay for about every 3rd one - which will save us a lot of money.  While I am still not crazy about having to have the scans every 8 weeks, this will help some money-wise at least.

Checked my CA-125 number online today and it is still at 10!

I got a message from my doctor just before Thanksgiving that my CT scan looked good. I just had a routine 4 week visit today with lab work and then had my drug dispensed - that is the part of my visit that takes the longest. The pharmacy has to wait until the labs come back and then the doctor has to sign the order for the drug and then I have to wait around until they fill it and the study coordinator brings the medication to me.  My breast MRI also looked clear which is good news too.

I went in for my CT scan and Breast MRI today.  I was a little bit worried with them being scheduled back to back, but it worked out fine.  I went to the clinic to pick up my contrast and then had to sit around drinking for the next 1 1/2 hours. During that time I went to have my port accessed and then they took me back for my CT scan. They had me change into a gown and pants for it and then once it was done they immediately took me over to my MRI. It was really weird though because they made me change again into another gown and then I had the MRI done. The MRI went pretty quickly and then I was able to go home.  All in all it was pretty uneventful.

I just realized the other day that the nurse never called me with my CA-125 number from my last appointment.  I am able to access my lab results online now so I looked it up this morning and my number is down to 10 now!

Had another appointment with my Huntsman team today.  There was a resident doctor who met with me first and then my regular doctor came in.  Everything is still looking fine.  There is one number in my labs that they are a little concerned about but they say with the vitamin B12 supplement it can take up to 3 months to see the number change - assuming that the problem is low vitamin B12 levels...

Had an appointment with my surgeon's office today.  Everything is still looking fine so I will see them again in 6 months unless something new comes up.  I was hoping to be able to talk with my surgeon today but she was busy with some new patients so I only saw the nurse practitioner.

**Note - I have been getting way behind in my posts - both on this blog and on my family blog.  For those that don't know, we recently moved and I will blame that for my lack of blogging lately.  I will try my very hardest to get everything up-to-date before the holiday season is upon us!  This blog will be the easiest of the two so I will start here.  And please know that we are all doing well and are as busy as ever!

It is weird just having my youngest at home with me during the days now!  Yesterday my mom came to my house to watch MJ during my CT scan and today I dropped MJ off at my mom's house on my way to my appointment.  My scans looked good once again.  The Huntsman Hospital and University of Utah Health Group now have an online system where I can see my test results once my doctor releases them so right before she came in to visit with me I had noticed that she had just released my CA-125 number.  So I quickly clicked on the results from that test and my number has dropped to 11!  My new all-time low!

They can't draw my study labs at the clinic near my house (where I have most of my scans now), so after my appointment I had to go and have some more labs drawn.  Some of the nurses tend to overreact to my skin and my port at times.  I have skin that flushes really easily and it is also pretty sensitive.  So when they are rubbing my port with alcohol to clean the skin prior to accessing it, it usually turns bright red and the nurses get nervous that I am having an allergic reaction or something is wrong with my port.  I always have to keep reassuring them that it is perfectly normal for me and that I will keep an eye on it and report if there is anything unusual going on.

Had another CT-scan today...  The radiology technician commented when I was through with it that I am by far her quickest patient.  I just make sure each time to not wear any clothes that have metal so I don't have to even change for the scans.  Once they call me back for the scans I am maybe gone for 5 minutes and then I am on my way back to the Huntsman lab to have my port deaccessed.  I told the tech that that is nice to hear, but also sad since that means that I am a regular patient and I have been there enough to learn the system...

Had another 4 week visit yesterday.  Everything with my labs looks good except for one of my numbers which has to do with the size of the red blood cells.  Apparently mine are a little bigger than they should be and that number in my labs has been going up the last few visits.  This can sometimes be linked to anemia, but my iron and calcium levels have been normal.  Yesterday they tested my Vitamin B12 levels and they are a little lower than they would like to see so they asked me to start taking an over the counter Vitamin B12 supplement.  My CA-125 number went up slightly to 16 but that small of a rise isn't a concern at this point.

We just moved!  It has been a super crazy summer so far and I had to go yesterday for another CT scan...  I am getting a little tired of these scans...  Thankfully everything still looks good.  They told me at my appt today that my CA-125 number is now at 13.  I am enjoying watching that number go down!

Had my 4-week appt yesterday and had labs drawn.  They called with my CA-125 number today and it is still at 14!

Just had my routine 4 week appointment today.  I had my last CT scan last week and everything is looking good still.  Plus, my CA-125 number has dropped to 14!  That is the lowest that I have ever been!  It looks like this new drug is having a good effect on me so far.

Had a call from my study coordinator when I got home this morning.  I called her back but had to leave a message.  Then later I had a message from the nurse at Huntsman letting me know that my CA-125 number has dropped to 23!!!  (It was 77 last month.)  Unfortunately I still haven't had a chance to talk to anyone at Huntsman about it but that is a huge drop.  I am now back in the normal range!  I told DH that I will feel really good if I get two numbers in a row that are low!

Today I went in for my 4 week appointment for the study drug.  I have been a little nauseous off and on still with this new drug but overall I feel alright.  Today they drew the regular labs as well as the study labs.  When I went into the exam room the nurse said that this is her last week working at Huntsman so she needed to say goodbye and give me a hug.  She has been a great nurse and I have enjoyed working with her.  She is moving on to a new job at Primary Children's Hospital.  She said that it is hard working at Huntsman.

My doctor's team was pleased to see the results from my lab work today.  Apparently they were all really good and sometimes at this point there are some side effects from the drug such as anemia  - which I don't have any signs of.

After I met with the doctor the study coordinator got the new round of medication for me and I was sent on my way home.  I don't have to come back for another 4 weeks.

I took MJ with me this morning to get my additional labs drawn.  I just had her sit on the floor next to me and let her play my ipad while they were drawing the blood.  They took it through my vein this time.

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.

I unfortunately think I am coming down with an infection in my tooth now...  It has been causing me some pain today and general achiness in that area of my mouth...  I think I will need to call the dentist in the morning to see about getting on an antibiotic and discussing which treatment option I think I will go with.  Then I will probably need to call my oral surgeon to try and get in for a consultation.  The fun just never seems to end for me!

I'm wondering if there is a correlation at all between my tooth problem and my rising CA-125 number.

One of the nurses from Huntsman called me today to talk some more about the Avastin with my dental work.  She said that she had talked with my doctor and since the Avastin has a pretty long half-life, she recommends that I try and put off any major dental work for 3-4 weeks if I can since I just had an infusion on Wednesday.  I will be taken off of the study and will keep my CT scan and lab work appointment in six weeks as well as meeting with the doctor.  We will discuss then what our next step will be once we have results from the scan and labs.

I asked about getting my port flushed if I am not keeping my infusion appointment in 3 weeks.  It is a good idea to have it flushed at least every 4-5 weeks and I will not be going back in now for another 6 weeks.  We decided to set an appointment for the clinic near me for 3 weeks from now just to have it flushed.  That should be a nice, quick visit.

Some not so great news today.  I had a dentist appointment this morning just for a rountine cleaning and mentioned that I had been having some tooth/jaw pain off and on in the right lower side of my mouth.  This is the same section of my mouth that I have an implant already and then a year after the implant had to have an apicoectomy/root canal procedure on the tooth right behind the implant.  After the hygienist did the cleaning, they took another x-ray of my lower right jaw and the dentist came in and looked at the x-rays and apparently I have some tooth decay on that tooth once again.  The dentist drew me some pictures of what is going on with the tooth and told me what my possible options would be.  My concern with hearing all of these options is that the Avastin that I am on has some warnings with it if there has to be any major dental work done.  The Avastin interferes with the blood stream and clotting and healing.  I expressed some concern to my dentist and he told me which of the 3 options would be the least invasive.  I don't think that that options is the one that I would prefer to do though.

Then later on in the day I talked with the study coordinator at Huntsman and she said that my CA-125 number has now jumped up to 70.  That is the upper limit for the study so she said that I can stay on the study through my next infusion in 3 weeks but once they get results from my next lab work in 6 weeks, I will probably have to be pulled from the study - assuming that my number stays the same or continues to go up.  She said that the decision was up to me if I want to stay with the study through the next treatment or not.  I then told the coordinator about my dentist appointment this morning and she said that she would look into the specific requirements and recommendations regarding dental work while on the Avastin.  She said that she would discuss it with my doctor and let me know, but at this point I will most likely be pulling myself from the study to get this dental work done.

Met with my Huntsman doctor today.  The nurse that drew my labs was looking at my info and asked how long I have been coming in for treatments.  I said it has been a little of 2 years now.  She was saying that she noticed my age and thought that I was awfully young to be going through all of this.  She then asked how they found the cancer.  It's hard to believe that it's been over two years since my diagnosis and even my surgery now.

So far all my labs look good but it takes a day or so to get the results for the CA-125 number.  They said that that test they run in batches so they run it at a certain time during the day and do all of the CA-125 draws at the same time.  I asked what the course of action would be if my number is above 70.  They said that there are a couple of different options that we can go down.  One would be to put me on an oral maintenance drug called Tamoxifen.  This is one that is used quite often with breast cancer patients and the thinking is the same with ovarian cancer patients.  With BRCA-1 patients it is thought that the female hormones can contribute to the cancer and the Tamoxifen helps to inhibit to production of those hormones.  Another possible option is another study drug which is called a PARP inhibitor.  There is a study that is apparently looking specifically at BRCA-1 patients and if the drug helps inhibit the growth of tumors.  That is also an oral drug that I think they said is taken once or twice a day.

All of this of course is assuming that my next scan still comes up clear and that I feel fine with no other symptoms exhibiting themselves.  If my next CT scan is not clear then we would look into another possible surgery and/or chemotherapy treatment.  The hope though is that even if the cancer comes back, we will hopefully be catching it at such an early stage that it will be more easily treated than the first time around.

My blood pressure was normal when I went for my infusion so that part went relatively easy.

I rescheduled my appointment that I was supposed to have last Wednesday to today instead because my kids are off-track from school and I have them in swimming lessons on Monday, Wednesday and Fridays.  So I rescheduled for a Tuesday so that I wouldn't have to figure out how to get them to their lessons or have them miss.

Today ended up being such a pain for my infusion!!  I wonder if the Tuesday thing threw it all off because they were not able to get ahold of my study coordinator and she had to approve the infusion before they would go ahead with even mixing it in the pharmacy.  My appointment was set for 7:30 in the morning and I ended up having to wait over 2 hours for them to finally start the infusion!  The nurse kept coming over to me and apologizing to me that it was taking so long!  Once they finally got the drug everything went smoothly after that.