Another appointment today. I asked about what our next step would be if my numbers continue to go up and the spot on the scans continues to get bigger. Dr Werner said that if that happens, they will look into doing a biopsy of the spot to see if it is cancerous or not. Also, my scan next month will be done without the IV contrast. That will make it a little more difficult to see things on the scans but since they have a spot that they are keeping an eye on, they should still be able to see it in the scans. They also said that they have the new protocol for the study drug written up and sent to the NIH (or the FDA - I can't remember which now) for approval. That will allow us to do the scans less frequently as well as doctor visits if we want to.

Well, my CA-125 number has jumped above normal... It went up to 36 this time around.

I met with my oncologist first and we discussed the results of the scan and the CA-125 number. The spot on the scan is maybe slightly bigger than the previous scan - but really not much. The CA-125 number consistently going up is also concerning. At this point though there isn't much they can do about any of it.

Afterwards I had an appointment with my newest new surgeon... This is the first male doctor that I have gone to and I wasn't terribly impressed... He is an older man and while he was friendly enough, he didn't seem at all concerned about my scans or my CA-125 number. He checked me out internally and things appear to be fine to him. He wants me to come back in about 3 months to see him.

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.

My CA-125 number jumped back up this time around. This time it was a bit of a bigger jump and it is at 30... Slowly getting closer to the normal upper range of 35...

Another routine appointment today. I will find out my CA-125 results tomorrow. When I was done having my port accessed though, I went into the restroom for the urine sample and when I was washing my hands I looked in the mirror above the sink and my shirt had blood all over it! Apparently my port had bled afterwards and it was completely noticeable!! I was wearing a bright green shirt and it was very obvious! I went back to the nurses station and showed it to the nurse and she cleaned me up and used some hydrogen peroxide to get most of the blood out of my shirt. (And after I got home and washed it, all of the blood did come out.)

Well, my CA-125 number went down slightly to 23. My appointment went fine again. We talked a bit about my allergic reaction but other than that, not much to report. They are still seeing the same spot on my scans but it appears to be about the same size.

At my last appointment they gave me another premedication regimen for my next ct - scan which adds me taking a Zantac pill an hour before the scan with the Benadryl and Prednisone. I had M&M drive me again. Unfortunately they were running behind and I ended up having to wait an extra 45 minutes or so before they finally took me back. When I was waiting for my oral contrast I had M&M run down to the pharmacy to pick up some Benadryl for me - which I am supposed to take an hour before the scan.

My reaction was pretty similar once again, although I didn't throw up this time which was good. I got super flushed again and one hive appear on one leg. They allowed me to just wait out in the waiting room for about a 1/2 hour to make sure I didn't have any more reactions. The bottoms of my feet felt really itchy but that didn't last too long.

My CA-125 number went up to 25 this time around.

Things were pretty routine at my appointment today. Nothing really to report.

Well, unfortunately today I did not get the best of news at my appointment... My CA-125 number jumped up to 24 and that one spot that they identified in my last scan appears to be slightly larger this time around... My doctor said that she isn't too happy with either of those developments. So at this point they will continue to monitor both the CA-125 number and that one spot. If it is larger next time around, we may start discussing surgery with a surgeon at Huntsman...

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.

My CA-125 number went down to 18.

Dr's appointment went fine today. Nothing really to report. I picked up some Prednisone that I will have to take before my next scan. I have to take the Prednisone as well as Benadryl.

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.

Had my annual mammogram today. Everything went smoothly and they didn't find anything suspicious looking.

Well, apparently I will be switching surgeons again... I met with the surgeon that I had switched to over at Huntsman and at the end of the visit she said that she was moving up to Washington in the summer and I would need to switch to another surgeon. Other than that the appointment went fine.

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.