Thursday, March 26, 2015

Another curve??

I wanted to update on my bloodwork that I had today. My phosphate is down to 5.9 compared to 7.2 two days ago. I have not taken the clinical trial pill for two days so my phosphate would drop. But that's not all that dropped. My white blood count was sitting pretty at 5 two days ago and today it is 3.7......I am not REALLY REALLY concerned about it and I figure it is partly due to the clinical drug. I am healthy, exercising, and signed up for the 5 K Run/Walk on Saturday. My platelets are also slowly declining which is of more concern to me than anything else on my labs....on March 17th,  they were 122, March 24 they where 105. TODAY, they are 96. (96,000 for you biology people). So, the slow decline had me marching up to the 7th floor at MD Anderson to talk with Dr. Javle's nurse to see if I should be resting, eating spinach and red meat.....and if I should cancel the 5K on Saturday. Ron (Dr.Javle's nurse) said to run the 5K if I felt like it and to do whatever I wanted. Nothing I eat or do physically will not affect the lab numbers. The 5K usually has 800 to 900 people in it....OH MY!  It is downtown on the MD Anderson campus and blocks around MD Anderson. It is also put on by MDA and there's a goody bag involved. I love free stuff so I plan to be there!

I suppose it is just a waiting game to see when the clinical trial nurse will call and let me start taking the pill again. I am hoping SOON but it could be next week when I get blood work done and my labs should look better also. Not one person on this trial has had a totally smooth ride on it. Trying to get the correct dosage is what they are trying to figure out right now. From early scans of other patients on this trial, it is doing some good things for patients!!  I have to keep my faith that it will be just as good for me!  If not, hey, I'll just back up and take a different curve!! Try something different~~

Pat and I are going to West Texas tomorrow....not as far as Fredericksburg (sorry, Julie) as it's like 4 1/2 hours one way. Brenham, Tx is just about an hour or so away and is also known for their bluebonnets. Camera is charged and I am excited to go tomorrow. It is suppose to be sunny, warm, and just a perfect day for some diner eating at a local mom and pop restaurant and lots of bluebonnets. I have been warned to watch for snakes and ants.....two of my most detestable creatures!

I received a really nice goody box from Samantha and Chris (daughter and son-in-law) today. It had some snacks, a Yeti mug to keep my water cold (a huge SCORE for me as Samantha knows I love her Yeti mug), a couple of sweet letters from Sam and Chris and one from Katie Fey. Last but not least.... included in with the box of goodies was a pregnancy test!  Funny ....real funny!  When I first came down for the trial, my urine came back as positive for being pregnant, then my blood test for being pregnant came back positive. Funny girls!!!

I will pray for better test results next week that my white count and platelets are climbing in the right direction. I pray for the different people I have talked to on the phone this week fighting this monster. They are looking for direction, inspiration, knowledge, anything to help in this fight against CC!!
I pray the doctors can figure out a dosage that I can continue to keep taking and not have these stop and go periods in the trial. BUT, they are normal and I was warned by people on the trial. I thought I was going to be better than them, I was going to follow a diet to a T, drink so much water my phosphate levels wouldn't rise......but, I am not the problem. This is a clinical trial in phase 2 and this is where they find out the best and most effective dosage without killing the people on the trial. With that being said, I will pray they find the best dosage fast and let more people on the trial as it does seem to be showing good results in some of the people I have talked to.

In less than a week, I will be on my way home to Illinois.  I cannot wait to see my momma, my girls, my sisters, grandkids, friends, and just good ol' Olney!  Easter afternoon, we will start back to Houston, Texas with Linda Burgener.

I see Dr. Javle before leaving for Illinois, and will update as soon as I can. God Bless and Have a Blessed Easter!!!!


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