121,603

     That's the amount of hits my blog has had....maybe just checking to see if I've blogged or seeing on Facebook that I've posted and then they read the post....either way, it keeps count of how many hits my blog had and all the different countries from around the globe that read my blog.

     Numbers.....when it comes to labwork, tumor sizes, cancer markers...it's all about numbers. Relay for Life, miles back and forth to Texas....it's all about numbers. Maybe that's why it's one of the first things you learn as a child. 1...2....3!!!  My lab numbers today were some of the best they've ever been. If you are a cancer patient, you can say the CA 19-9 (for CC patients) doesn't mean much. BUT to me, it's a trending number that has continually went down when I am doing really well...and it has climbed when I had more active cancer dancing inside of me. Today....DRUMROLL.....my CA 19-9 is 7.9.  Dr. Javle states it's probably lower than his or my husband's!!  They keep a chart of mine showing the ups and downs and this shows me it DOES mean something with my cancer. Maybe it has something to do with me having such a slow growing cancer.  The more aggressive ones seem to be on the higher side.
     The reason I was put on this clinical trial was because I had an aortal lymph node that was new but we wanted to stop it in it's track FAST. So, after weighing our options, we decided to try the BGJ398 trial that targets the FGFR2 mutation in my body. The aortal lymph node two months ago was 20mm x 16mm. After two cycles on the trial (and I had to stop the pill after 14 days due to my high phosphate level), today my aortal lymph node size was 13mm X 9mm.  Dr. Javle was ecstatic over the shrinkage. All other activity in my liver is stable..no growth. I asked about my liver and kidney function....Dr. J states it is all well...no worries with them so far. My spleen is somewhat enlarged (and has been for over two or three years) so at this point, no worries!  IF it would continue to get more enlarged, they may do a spleenology procedure or something. It is enlarged because it is eating my platelets up hiding them in my spleen. My platelet count is not within normal limits BUT the number is not bad enough to worry about it at this time (they are hovering around 110,000). So...bottom line is.... the drug is working. I have hardly any side effects. The low phosphate diet is not that big of a nuisance.....it's do-able. So, I will start on 75mg Wednesday and I know it will still be working inside my body. This seems to be where most people are at....some are even at 50 mg with stable reports.
     I met a lady that has had CC (in her mid to late 60's..I'd guess) and she has been seeing Dr. Javle for almost 6 years. She has been on this trial since December 2014. She is doing well and stable. I also visited with Vicki Davis who is a bright ray of sunshine.
     To sum the day up, I wasn't sure what the scan would show today. I had faith that no matter what, I would take it one day at a time. As I was being slowly moved into the dome for the CT scan, I thought to myself....."No matter what, God is with me"....and I also thought of what someone said to me at The Relay For Life Saturday night....all you need is faith the size of a mustard seed. I KNOW I have more faith than that, but the point is, He is with me, every minute of every day. God is with all of us, and some people may have a stronger faith than me...and I sometimes feel I am not worthy.....other people have this disease and a stronger faith, so why am I getting all this good news and they are not. I haven't figured all of that out, and I wish Father Jerry was still here to talk this over with. But I do know I am blessed, I am loved, and I am so thankful for God's love.
So, not only is my cholangiocarcinoma stable, I also have shrinkage in the nodule. That, my friends and family is one of the best reports since getting this cancer in Feb. of 2011!!
     I want to close with a few words of thanks for all the friends, family, and complete strangers who bought books from our Relay for Life team. People who supported our fundraisers, donated their time, donated cakes, supplies, in any way helped our team win FIRST in the most money raised for our team FOR THE SECOND YEAR IN A ROW!! Suntone Beach Survivors rocked it this year with a lot of sweat to win that trophy again this year and I thank you all!! 
     O.K., I am really going to close this time...after thanking God. How awesome it is that He reassures me that all I have to do is Be Still and Know that HE IS THERE!  I am so incredibly blessed with his love.  SO INCREDIBLY BLESSED~~

I will close with the MD Anderson's logo on r. J's computer's...with my new Tieks on. AND, one with my children's books where proceeds benefit the American Cancer Society and The Cholangiocarcinoma Foundation. We still have books if anyone needs one mailed.  I would love to put a picture of our Relay team but since half are missing, I won't.

Many hugs!!
Patty