Had my 4 week appt today again. I had to wait a long time for them to even call me back for my lab work today. After waiting for about 20 minutes I went and asked at the receptionist desk and they said that they were just really busy and would get me back as soon as they could.  I ended up finally getting called back for the labs and by the time I saw the doctor it was about an hour past my appointment time.  (Usually they are pretty close to schedule and I am usually called back for my labs within 5 minutes of checking in at the front desk.)

I met with another resident fellow today. I'm never sure what to say to them because I really don't have any symptoms to complain about and not much to really discuss with them.  After that the doctor came in and I let her know that my surgeon is moving.  We think it would just be easier to transfer my care up to Huntsman so we are not having to send results back and forth between the two offices.

I also asked the doctor if I could ever be considered in remission. I have people ask me all the time and I am never really sure what to say to them.  She said that yes I can tell people that I am in remission - since I have no evidence of disease and my CA-125 number is within normal levels.  She said that I am just receiving maintenance therapy for the cancer - we are not actively treating any cancer.  So "YEA" I am in remission!!

I had a mammogram today.  It went pretty quickly and then the technician said that the doctor was going to look at the scans while I was waiting in case there was something of concern on the scan that they wanted to take another look at.  So after waiting for a few minutes back in the waiting room, the technician came out and said that things looked good and that I could go home.  That was kind of nice - better than the last time when I had to come back a couple of days later to do some rescans.

I had my 6 month appt with my surgeon today.  She said that she is moving at the end of June so this will probably be my last time seeing her.  Her husband got a new job in Michigan so she is transferring to a practice out of the University of Toledo.  She said that I can either transfer my care to one of her partners in the office or just transfer to one of the doctors at Huntsman.  Other than that everything went fine for my appt.

My CA-125 number is still at 10 this time around.

Went in for my 4 week appt today.  I asked the doctor about the labs that they wanted to draw on Monday and they were a little confused by it too.  Apparently I could have had them draw my labs on Monday but they have to do the study labs right before my appointment so it doesn't really matter either way.  I just couldn't remember if I was allowed to take my study drug on the morning of the regular labs so I didn't want to risk it on Monday.  I am not supposed to take the study drug before the labs for the study are drawn, but apparently it is fine for the other labs.

We also discussed my bone scan briefly and they said that my bone density levels are pretty close to what they were with my last scan and that my vitamin D levels look good so just keep taking the vitamin D supplements.

CT scan today. Things went fine for it.  When I went to get my port accessed, the nurse said that I had lab work for her to draw and I was a little confused because we usually just do it right before my appointment at Huntsman since they have to draw special tubes for the study anyway.  So I told the nurse not to draw them. Other than that, everything went as usual.

The bone density machine finally worked today! The scan went pretty quickly and then I was out of there and back home again.

I had my bone density scan scheduled for this morning.  When I showed up the technician came out and said that she hadn't used the scanner since that last time when it had broken down and when she showed up this morning there was a note on her desk saying that everything was working.  Well, she tried to turn the machine on and it wouldn't even turn on this morning.  So we had to reschedule again! And they gave me another $6 gift card to the eatery again.  Luckily this time I hadn't traveled very far to get there.  So I will cross my fingers that everything will work next week...

I also go my CA-125 test results back and it is at 10 again.

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!