Monday, November 11, 2013

RAY BEGAN the new drug for the Gilead trial November 8, 2013

Morning all
Here is the update from Fridays visit 11-8-2013 (Joan can you please share with WHO ladies, Carol can you please print a copy to share with Grandma & Granddaddy!)
 
Ray began the drug!!!!!!!!!!! Whoo hoo!
He takes the new drug just once a day, the other drug(ribavirin) twice a day. He was very excited on Friday, all smiles! They did the study randomization to see if he would be 12 weeks or 24 weeks- he received 12. I had prayed about it- not one way or the other but that the Lord would just do his will and we would accept whatever that was. I wasn't disappointed or let down- I just knew the Lord had answered saying "this is my will, this is my plan". Stacey- the study coordinator also said no worries, 12 weeks was plenty of time. She said now places are looking into studying the drug for 8 weeks of treatment because that is enough time to clear the virus. WOW! Stacey also told us that she had been on the phone with Gilead ALL week last week. One day Ray was kicked out of the trial (due to a coding problem..on Gildead's end....so then he was back in the trial...then another day he was back out...coding problem on Dukes end...one day Stacey spent over 2 hours on the phone with Gilead about Ray being in this trial. Finally on Thursday of last week Stacey said she told them "he's coming tomorrow and his IS going to start taking this drug"....PRAISE the Lord for angels on earth who FIGHT for us...even when we don't even know it...we told Stacey good thing she didn't tell us any of that until AFTER we came on Friday.
Ray will travel to Duke for the next several Fridays in a row- 3 to be exact and then it will begin to space out more. Most visits will just require blood work, talking about medication- if he's had an side affects and then dispensing more medication. Some are more in depth with more EKG's, examine, but not many of them.
Next week will be the first blood draw since being on the medication for 1 week. It will take about a week to get the HCV (how much hepatitis is in his blood stream) back after the first week. After that the next few weeks will begin to let us know how his other liver numbers are beginning to come down and get back in check. Stacey did tell us that if Rays body can clear the virus within the first 4 weeks of treatment that was a very good sign and a good indicator that the virus would not reoccur. If he was not able to clear the virus until week 7 or 8 of treatment then there was more of a chance of the virus returning after treatment. Beginning the treatment his HCV (viral count) is 28 MILLION copies of the virus in his blood stream. Gilead knows this drug WILL CLEAR the VIRUS...it is keeping it away- what they are looking for.
We are truly just thrilled that Ray is in the study and has an opportunity he has never had before- ACTUALLY clearing this virus. Our next prayer is that the drug begins working and clearing the virus over the next couple of weeks. I also pray that he is able to tolerate treatment, stay strong, his kidneys remain strong and tolerant and his hemoglobin does not begin to go down anymore. I know a lot of prayers right- but it is ALL a balancing act!!!
We will keep you all posted as we hear more from upcoming labs, etc...it may be a couple of weeks though. Even though he will have labs drawn next Friday it may take up to a week to get results back.
Many have asked how many points did the number drop that was keeping him out of the trial before- it was at 366, then dropped to 360 and then dropped to 281. THAT is the POWER of GOD and healing through prayers!
Thank you all for being such FAITHFUL prayer warriors for our family. We hope that over the next several months that you all can witness ANOTHER miracle in Ray with complete healing of his body!
xoxoxox-Janet and Ray

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