My CA-125 number crept up a little to 17 this time around...

Dr's appt went fine today - nothing really to report

My CA-125 number came back at 14 again. :)

Everything went smoothly with my Dr's appt as well. There was apparently one little spot on one of the CT scans that they have circled to keep an eye on. The spot is fairly small and it could just be a blood vessel - so they will just check that same spot on my next scan to compare the two. I will be getting a new study coordinator once again. The current one just got accepted to school to become a physician's assistant which she will start in May. So I will be training a new one. :)

I had to wait a super long time for my study drug today - I think it was close to an hour and a half - after I had met with the doctor.

Nothing to report with my scans. Everything went smoothly.

I have been a little hesitant to post my last CA-125 number... I found out the day after my January appointment that my CA-125 number had jumped up to 18. Now that is not a huge jump but it has been concerning to me. When I was on the Avastin, my CA-125 number was low and then it gradually started climbing back up until it passed the normal level of 35 and then double that to the point that I was kicked off of that study drug.

I am happy to report though that I got my lab results back for yesterday's appointment and my number has dropped back down to 14! Yea! I think my doctor was a little concerned as well because we didn't discuss it at yesterday's appointment at all but she emailed me as soon as she got the results back and let me know that it had dropped back down. It is a little nerve wracking at times waiting for that test result to come back.

I got an email from the study coordinator last Thursday letting me know that the study sponsor has decided to allow me to drop the lab that needs to be drawn from a vein so they can continue to use my port!

Things went well for my appointment. My nurses and doctor remark every time I come in on how easy of a patient I am. :) I apparently have an affect on the nurses though because I have now caused a second nurse to forget to flush my port with heparin... She felt really bad! After she had drawn the labs and flushed the port with saline she took the needle out and put a bandaid on and then looked down and realized what she had done! So she had to get out all of the supplies again and redo everything a second time! I guess I need to stop being so friendly and conversational with the nurses while they are working on me!

My doctor said that they are wrapping up the studies on the drug that I am on and getting ready to present the results at a medical conference in June. She sounded pretty excited about it all and said that things are looking good for this drug and that I am helping to change future treatments for cancer patients!

So I went to my appointment and started out with having my labs drawn as usual. This time though they would not allow the one study lab to be drawn from my port so we just did all of the labs through the vein in my arm this time. When I met with the doctor and study coordinator we talked about possibly getting my port taken out if I am not allowed to use it for the study lab anymore. They said that they would let me know when they hear more from the study sponsor. I am a little frustrated because it is not like this is a new thing - they have drawn the labs through my port for over a year and a half while I have been on this study. I don't see the point in having to change how we do it this far into the study. It seems to me that if this has been a problem from the start they should have noticed it earlier and started enforcing it earlier...

Other than that my appointment went fine.

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.

My CA-125 number is at 14 again.

I had my annual breast MRI today. I had them use my port for the contrast that they administer for the scan. Afterwards the technician said that next time we should probably not use the port because it makes that part of the breast tissue hard to scan with the needle in it. So he said that unless I have poor veins I should probably have an I.V. put in my arm for the next scan. I had never heard that before so I guess I will consider it for next time. Maybe I'll talk to my doctor about it at my next appointment.

I got the results back later in the day and they did not find anything that appeared to be cancerous.

I had a little bit of an issue with my labs being drawn today. There is one study tube that is supposed to be drawn from my arm - not from my port - so that the heparin that they put into the port doesn't interfere with the results. The tube is to test for blood clotting and I guess the heparin can cause a problem sometimes. After my first round of tests were done that way, my study coordinator said that it would be fine to just draw that tube from my port as well - just have the nurses draw it last. So that is what I have been telling the nurses each time - and most of them did question me on it. Well, I guess my doctor has been telling the nurses to make sure that the labs that are supposed to be taken from the arm are taken from the arm and not from the port. So the nurse questioned me on it and I raised a bit of a stink about it and she finally decided - even after talking to the study coordinator and the nurse that works with my doctor - to just take the lab tube from my port after taking out some extra blood to help clear it. I talked with my doctor afterwards and said that this is how we have been doing it for over a year and a half now and if they are going to raise a stink about it and require it to be done out of my arm, what is the point in me keeping my port in? And why hasn't it caused problems with the results up to this point? Anyways, my doctor agreed to allow me to have it taken from my port so we will continue on as we have been doing for the last year and a half...

Other than that my appointment went fine.

My CA-125 number is at 14 this time around.

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.

Met with my new surgeon today (since my original surgeon moved over the summer). She was nice. She was very impressed with how nicely my incision has healed. She said that she doesn't think she has ever seen one look so nice! I am actually surprised as well how much my scar has faded. I will try and take a picture that I can post on here when I remember. :)  The appointment went fine and everything looks good as far as they can tell.

My CA-125 number is at 12 this time around. :)

My appointment for this time around was scheduled for a Monday so that we could have it the same day that I met with my new surgeon. As it turns out though, whoever scheduled my appointment with the surgeon created an appointment at a bogus time that wasn't in the system and they had to call me and reschedule it for the following week...

Since it had been almost 5 weeks since my last appointment, the nurse had a little bit of trouble getting my port to work correctly... (I actually think that the nurse was a little too hesitant at sticking the needle into it and didn't get it in good enough. We will have to see though - that is just my personal observation from someone who has had her port accessed at least once every 4 weeks for the past 4 years...) Once she got the port working, it was much slower at drawing the blood out than I ever remember it taking. Hopefully it was just a one time thing - we will find out in 4 weeks when I have my next CT scan.

They also didn't have all of my normal labs listed to draw today so I made them call the nurse who works with my doctor to get them ordered. Again, since I have been doing this for a while now, I pretty much know the routine and try to make sure they get it right so I don't have to have my port re-accessed - which they've had to do before.

After all of that, everything went fine with my appointment. The study coordinator who I have been working with for a little while now apparently just recently took a new position up at Huntsman so there was a new coordinator there today. She seemed nice though - it will just take her a little while to get up to speed on everything that she has responsibility over now - she was the previous coordinator's assistant.

After my appointment I had an interview with someone who is conducting a study of young cancer patients and how they can best be helped and supported during the cancer treatments. It was interesting and made me think a lot about what I have gone through up to this point and maybe what would have helped me more while I was going through my initial diagnosis and early treatments.

I had my follow up appointment today. Everything looked fine on my scans and my CA-125 number came back at 13 which is fine. I asked if it helped to do my scans the day before so we can have the results in time for my appointment but the study coordinator said that they can't sign to have the drug released to me until they have physically seen me in the office - so getting the labs done sooner makes no difference. The nurse today asked me how long I have been coming into the office (she has only been there a little less than a year). I told her that it has been about 4 years and she said that she was wondering because I always have all of the routines down pat and know where everything is and everything just goes really smoothly for my appointments.

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.

Just checked out my CA-125 results from yesterday. It is at 11 once again so good news there.