CK stands for Creatine kinase. Elevated levels often indicate muscle damage, and it is tested for when trying to determine if a person has had a heart attack or has suffered damage to the heart, brain, or muscle tissue. Every time I have blood work done, CK is tested for, because the drug I am taking could possibly cause muscle damage. If a patient on LDE225 continues to have high CK levels, the patient will be disqualified from taking the drug.
My doctor told me (through my PA) to stop doing strenuous activities until my CK levels get back down to normal. She said it would be OK to continue walking for exercise, but I need to lay off of the hard work. Aw, man! Helen wasn't with me when she came in and told me that, so I asked her to come back and tell Helen she was going to have to quit working me so hard! Doctor's orders!
My next visit will include another DEXA Scan (bone density scan). These come every six months in this clinical trial. It seems like no time since I had my last one. That one revealed some significant bone loss, possibly a side-effect of the drug. We'll see what this one shows.
God continues to bless us beyond our ability to ask or think. We are so undeserving and so thankful. He has been more than faithful to His Word. We continue to trust Him and depend on Him to guide us through our days. God is so good...
3 comments:
Hi. I just wanted to say a "thank you" for your blog. My 16 year old daughter is about to start the dosage study on this same drug as part of the 18 and under group. She has osteosarcoma with mets to the lungs and your blog gives us hope and a reminder of God being sovereign. I believe the doors were opened for her to be part of this study by a loving God who loves her more than we do. THank you again, Jane Pope
Jane (and daughter), First, I want to thank you for your comments. I have often wondered if it was worth continuing my blog, and you have given me affirmation that it is. My desire is that readers can see hope and know that God can be trusted even when things are hard.
Thanks also for sharing about your daughter. I want to encourage you to let go and let God do what He wills with your situation. No matter the odds or what the numbers say, God has a great plan for us, and it IS both for our good and His glory. It is not influenced by conventional wisdom or statistics.
Helen and I will be praying for you both, as well as your family. We pray for God to flood you with peace and assurance of His presence though each day.
God's blessings on you!!
Kenny Scott
PS to Jane. I would like to hear how it's going with y'all. If you are comfortable with it, feel free to give updates here. If you would like to but would rather not on this blog, you may email me at caseycarl@ymail.com.
Kenny
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