I just had my routine 4 week visit today.  Everything looks fine with my labs.  Since my kids are off-track from school, I dropped them off at my parents' house on my way into the clinic.

I did notice that my last CT scan was not paid for by the study like it was supposed to be.  I let the study coordinator know and she is looking into it.

I had an appointment for a bone density scan right before noon today.  I took MJ over to my parents' house and helped them pack up their kitchen for their cabinets to be redone and then I drove over for my appointment.  After sitting around for a little while I overheard someone talking to some ladies and it sounded like there was some machine broken and they were having to reschedule appointments.  I asked the technician about it and she said that it was the dexascan machine - which is what I was there for.  Apparently it quit working during someone's scan and after rebooting the machine it still wasn't working so they were having to reschedule all of the appointments for that day.  They usually only have appointments one day a week but the following week they were not going to be having any appointments.  I now have to wait until the day after my next doctor's appointment to get my bone density scan done.  They did give me a $6 gift card to use at one of their eateries though...  I think I will save it until I go downtown next time since it will be over lunch time.

My CA-125 number went up one digit to 10 but nothing to cause alarm.  The nurse called me to let me know that my vitamin D level is slightly below where they would like to see it so they want me to take more vitamin D supplements and calcium as well.

I took MJ over to my parents' house while I went in to the Huntsman clinic for my dr's appt.  Everything was clear with my CT scan and lab work.  I asked the doctor if she thinks it is worth it for me to stay on the veliparib drug and she said she definitely thinks it is helping to keep the cancer away - but I can take myself off of the study at any time if I want to.  They are hoping that the drug manufacturers at some point will let us scale back on the CT scans and allow us to space that out more. I asked about the parp inhibitor drug that was just approved by the FDA for cancer treatments and the doctor said that I would not qualify for it (or my insurance company would reject the treatments) because they require that you have to have tried the standard chemotherapy options 3 times before they will pay for the drug.  Also she said that the other drug has to be taken something like 8 times a day.  She thinks that the drug that I am on is a much better version of parp inhibitor.

They tested my vitamin B12 level and it was actually slightly above the normal range - so that is not what is causing my red blood cells to be abnormally shaped.  They think it is just the drug that I am on - although they have not seen that side effect in everyone that is on it.

Another routine CT scan today.  My mom came over to watch MJ for me.

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!