So my husband was supposed to drive me to my CT scan today since my daughter is away at college now, but he had a conflict with a conference he was supposed to be attending - actually not too far from Huntsman. So I ended up taking Trax to my appointment and then my husband met me there and he drove us home afterwards. I took the same premeds again today along with the Zantac. (Looking back though I think I only took half of the dose that I was supposed to take of the Benadryl.) They administered the IV iodine contrast a little slower which I think helps with the nausea that I have felt in previous scans. Afterwards I had a little bit of a tickling feeling in my throat along with the other symptoms that I have been having up to this point. Afterwards the radiologist came and talked to me and is going to recommend that I not do the IV contrast anymore. I guess the concern is that the reaction may get worse and that is something that they don't want to play around with.

So today I had M&M come with me to my CT scan because I had to have a driver with me because of the premedications that I had to take. I also had to go to the Huntsman hospital instead of the satellite office which is closer to my home. So we got there and I picked up the contrast drink and then had my port accessed for the scan. I was a little nervous for the scan but made sure to warn the techs that I had an allergic reaction last time and that I had taken the premeds that they prescribed me. Well I ended up having the same reaction this time... I felt super warm and flushed and my skin turned bright red and I also threw up and had one hive appear on my leg... They had a physician come and monitor me and then they took me to a small room to wait and make sure that nothing else happened. They had M&M come and wait with me in the room. After about a half hour they let me leave and after having my port deaccessed, M&M drove me home.

Right before my appointment they released the results of my CT scan. The radiologist wrote in the results that there is a spot in the scans that is slightly bigger that they have been following for the last several scans... What?!? There has been no mention of this before in my previous scans.

When my doctor came in she asked if I had read the results of the scan and she said that this radiologist is a little too thorough sometimes and he flat out made that part up about there being a spot that they have been following... So, apparently there is nothing that I should be worried about at this point in my scans. There is a very small spot but it is hard to tell if it is really something to be concerned about or if it is just a blood vessel. So they will keep an eye on that area for future scans.

We also discussed my allergic reaction to the scan today at my appointment. Unfortunately at this point the study will be ending but not for a few months until they can rewrite the criteria for the study drug. So next time I have a scan I will need to take two drugs prior to the scan to hopefully counteract any reactions.

I also got my CA-125 number today and it went up again to 19...

Well, I ended up having an allergic reaction to the I.V. contrast today during my CT scan. As soon as the scan was over I felt really hot and flushed and my skin turned a red color - like I was sunburned. My heart rate also went up. I also felt like I was going to throw up. The radiologist tech called in a physician to check me over. I laid down on the bed in the scan room until the symptoms subsided. I ended up getting 2 small hives on one of my legs. They had me stay in the office for about a half hour to make sure I was alright before I left. They told me to take some Benadryl when I got home.

After that I went and had my port deaccessed and then went home and took some Benadryl. I ended up throwing up a little bit once I got home as well. After the Benadryl I laid down and took a nap and was kind of out of it for the rest of the evening...

Not sure what this means for future scans. The physician said that my reaction was more of a physiological reaction and not necessarily an allergic reaction. They said that in the future I would need to take some premedications before the scan.

Nothing to report with my scans. Everything went smoothly.

I was a little nervous about my CT scan today because of the possible allergic reaction that I had last time (when I sneezed 3 times after the contrast was injected). I was also really nauseous the last time I had my scan so I was hoping that didn't happen again either.

I took my study drug this morning and then right before I needed to start my 3 hours of fasting, I took half of an anti-anxiety pill that I used to take with the study drug to counteract the nausea. I actually felt pretty fine taking the gastro contrast agent for the scan. When I went back for my scan the technician asked if I had taken my medications. I was confused by her question and she asked if I had taken the drugs to counter an allergic reaction. I said that I was not given any drugs for that and that my doctor had not said anything about taking something beforehand. She went and looked at the notes on my chart and said that it indicated that I was supposed to take something before my next scan. I said that my doctor was hoping that the sneezing from the last time was just a fluke. So we went forward with the scan and I felt just fine. No sneezing or itching or anything. I asked when an allergic reaction would most likely present itself and she said almost immediately since the contrast goes straight into my blood stream. So it appears like the sneezing that I experienced last time was unrelated to the ct contrast.

Afterwards I had my port de-accessed and it bled a little afterwards - which can happen from time to time. The nurse was kind of funny because she said that she can go for months without having a port bleed afterwards and it just so happened that today I was the second person that it had happened to.

I got the results from the scans later in the day and everything appears normal once again.

Today I met with my Huntsman doctor and I talked with her about my experience with my CT scan on Monday. She hadn't noticed the note that had been added but it was a good thing I mentioned it to her because they apparently flagged me as having an allergy to the I.V. contrast and wrote in the notes that I sneezed 3 times. It was also noted that I was feeling nauseous. My doctor said that the problem with doing that is that we don't really know that it was the contrast that made me sneeze - it could have been something completely unrelated - and if I am flagged as being allergic to it, it would mean that I can only get my scans done at the University of Utah where they can monitor me closely. I wouldn't be allowed to have my scans done anywhere else.

So my doctor called a couple of doctors/techs to consult with them and they decided to change my record so that I was not flagged as having an allergy to the contrast - but that they would do the scan normally the next time and just keep a close eye on me for any potential allergy symptoms. Also she changed the notes to read that I was feeling nauseous before the scan was done and before the I.V. contrast was given to me. We think that the nausea was unrelated to the scan itself.

After thinking about it later, I think that the reason I felt nauseous was because of my empty stomach - not because of the oral contrast. I will have to talk to my doctor about maybe not taking my medication the morning of my scan next time.

The nurse had no problem with my port today so I think I just need to be more aware of the time that transpires between my labs - if it is over 4 weeks again I may need to go in just to have it flushed at the 4 week mark. The Huntsman office there at the South Jordan clinic was pretty busy today so I had to wait a little but thankfully everything went fine with accessing my port.

I had somewhat of a weird experience with my CT scan though. I was having a hard time drinking the oral contrast today and towards the end I almost threw up a couple of times. I occasionally feel nauseous still off and on but I think it is a result of the medication I am on. I tend to have problems if I have gone a little while without eating anything - and I have to fast for 3 hours before the CT scans. When they called me back for the scan I had a hard time drinking the last little swallow before they had me lay down at the CT machine. They way they do the scan is they hook my port up to the I.V. dye and then they do a quick scan just to make sure they have everything lined up correctly. Then they inject the dye and then after about a minute they do two scans - one is for the abdominal scan and the other is of the chest/upper body. While they are doing the scans they have you take a deep breath and hold it while they are scanning. With my second scan I really felt like I needed to sneeze and had a hard time not moving/sneezing while the scan was going on. When they finished I sneezed 3 times in a row. When I told the tech that he said that he needed me to stay there on the table for a minute while he watched me. Apparently this can be a sign of an allergy which can happen over time. He asked if I had any tightness in my chest or if I was having any trouble breathing - which was a no to both. I did feel like I was going to throw up again - so I went over to the sink but managed to get it under control and didn't throw up. The tech then had me go and sit out in the hall for a few minutes and then he came and checked on me one more time before he let me leave. He said that people can develop an allergy that can lead to anaphylactic shock. He said that I appeared to be fine and he would make a note in my chart so that they can keep a watch on me for the next time. I then went and had my port de-accessed and went home and didn't have any other problems.

I had my CT scan this afternoon. Up until this point my scans have usually been on Mondays in the morning/early afternoon but because of the Labor Day holiday and the fact that MJ is in afternoon kindergarten, my scan was scheduled for Tuesday afternoon. Everything went fine for the scan but it upset my stomach some and I had to skip going to soccer practice because I needed to be close to the bathroom! I ended up having them draw my labs today so I could get my results back before my appointment tomorrow.

Routine CT scan today. Nothing out of the normal to report.

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.

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

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.

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...

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!

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 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!!