Wednesday, March 18, 2015


Week one of Clinical Trail Protocol 2014-0372 better known as BGJ398 is done. There were some topsy~turvy turns and I am afraid I'm going to shake some people up in the next few days (I kinda feel like Jennifer Cummins-Zuber when she was in Springfield with Pat and I when I had blood clots and then a brain bleed.....if I think something is off, I'm not afraid to say something. Especially when they start a domino effect with the same person who keeps making the mistakes or not double checking their work). Jenn was always right there to set them straight....make sure my meds were in my room at the right times, etc.
So, the day before the clinical trial, I met with Dr. Javle and Ashley who is the Clinical Trial Nurse. We discussed side effects, what other people were experiencing, good reports of people on the drug, etc. I asked Dr. J to order my Anti XA to check my blood consistency so I don't get blood clots or a brain bleed again...and he asked Ashley to get this on my schedule. Dr. J asked Ashley to fax the RX scripts up to the pharmacy where I could then go and pick them up. When Pat and I went to get the RX, there were two bottles of pills, but they were 100 mg of the clinical trial drug and 25 mg of the clinical trial drug. You start off with 125 mg of the drug and hope you can stay on that strength although most  patients cannot. It has to do with high phosphate levels from the drugs therefore you also go on a low phosphate diet.  Little did I know I should have also received a script for a pill I was to take three times a day with each meal and it helps the extra phosphate bind to the medicine and it goes through the digestive tract instead of your kidneys and detours the long term damage that COULD happen over time with the drug...along with blindness, heart big thing, right?
So, I followed a very strict diet when I started the trial and did lots of label reading, research, etc. and drank up to 128 oz. of water a day. I cut out coffee, sugar mostly, chocolate, dairy, anything with additives, sodium, etc. I could even tell I'd lost a few pounds. The goal is to keep your phosphate level between the normal range of 2.5 to 4.5. Mine came in at a whopping 6.9!  Dr, Javle explained that mine was high and they were considering upping the dosage of the phosphate lowering drug. I said, "WHAT PHOSPHORUS LOWERING DRUG?" He said, "The one you've been taking with each meal."  "UMMM, I have no such medicine" was my next response. He looked at the clinical trial nurse who jumped right into her files and proclaimed sternly she had sent the RX to the pharmacy right along with the clinical trial pill script. When she pulled out the proof that she had faxed said NOT RECEIVED. Meaning the pharmacy didn't get the script. (sigh)  Then, Dr. Javle said he was quite impressed with it only being that high and he was certain as soon as I started taking the drugs, my phosphate serum would take a sharp downturn. I think Ashley might have gotten a talk.  I can't imagine what my phosphate level would have been if I wouldn't have been so cautious with the diet.
Two separate days, (back to the Anti XA) I was suppose to have it drawn. One time, I had other orders for bloodwork but NOT the Anti XA because Ashley didn't send it. The second time (today-day 7 of the drugs), she didn't put a note it had to be drawn at exactly the time I drilled into their heads (4 hours after I inject the Lovenox (blood thinner) to get the correct reading of my blood) and they drew the blood at 10 am instead of 12:30 when it needed to be drawn. The phlebotomist just thought she was doing me a favor since I look like I have lots of Dracula bites up and down my arms from all the pokes....and some bad bruises from some I.V. sticks. I told her it wasn't her fault. She said it should have had a special note stating it had to be drawn at the specific required time on the schedule.  So, I did get the Anti XA drawn today...just 2 1/2 hours too early. (sigh again)  I also volunteered to give Novartis (drug company who has produced this drug) a vile of blood once a week before I take the pill and two hours after...Ashley forgot to have me sign the permission slip for this and so the first time they went to do it....the consent wasn't there and I laid in a bed for an hour and a half until they could get her to answer her phone and get the paper to me. I was honked in a big way that day.
As I was leaving, a volunteer heard me talking to the phlebotomist and asked if she could help me with anything. I just told her it had not been the best week and I was a little disappointed with the clinical trial nurse. She pushed for more info and said I really needed to talk to my social worker. I told her I thought if we could get the Anti XA test right, then things would be all worked out. I told her I didn't have a social worker and she informed me I did. Maybe I just haven't needed one...I dunno.  So, this volunteer is getting ahold of my social worker who will call me and talk to me more. Now I wish I'd just have let it go and talked to Dr. J privately. (3rd sigh)  So, now my clinical trial nurse who will/could get a good talking to, will be real sweet to me from here on out.. right? NOT!

I have so enjoyed getting to know Ally (another girl that is one week ahead of me on the trial). She is so sweet and has shared info with me I wasn't told and I have shared info with her. She is a ray of sunshine from Bentonville, Arkansas. I briefly saw Danna Grisso who is on the trial, and then a different CC patient, Jeff, who  needed a ride south of Texas about an hour (two hours for Pat and I since we are an hour north of Houston) but I felt there have been so many people help me, that we needed to offer a ride. Yip...kind of like picking up a hitch hiker again but we thought we were pretty safe. I didn't have any appointments that day so why not! He was great and we just had a good visit on the ride to south Texas.

My I.V. nurse who gave me fluids to lower the phosphate level before your blood work was from Farina, Illinois. Her family still lives there. That was pretty cool.  I have talked to two separate individuals on the phone this week (one from Boise, Idaho and one from Boca Raton, Florida-ten miles from the beach. That's very important info to me-the beach part!! ;-) to talk to them about options for CC, different dr's to check out, they wanted info about my clinical trial, or  just people wanting a little hope with this rare cancer. Sometimes another CC patient gives them my name or they must get it from my blog or something. I don't ask where they got it, I just try and help them.

I am feeling quite well other than some loose scoots 3 of the 7 days. I finally took a pill one day to stop them. I went to the Houston Rockets game with Bruce and Deb Schonert Tuesday night. It was fantastic! Your heart just wanted to jump out of your chest with the excitement of all the people around you. It was a close game until the last 4 minutes when the Rockets rocked and pulled ahead for the win!!  Thanks Bruce and Deb for a wonderful night!

I received 12 cards today!!  You, my friends & family, do not have a clue how much they raise me up!! Each message...handwritten or just the words inside the card mean so much. I thank each and every one of you!! 

Tomorrow, no appointments unless I have to drive into MD Anderson for my Anti XA.....GRRR!  It's suppose to be about the nicest day we've had in a while as it has rained more than the normal amount down here. I have plans to wash the car, clean it out, then sit by the pool and read a book. Catch some sun and enjoy the warmth of the day with an expected high of 78.

No word on the children's book yet.....still at the printers. You will hear a LOUD squeal when it arrives in Illinois (even if I'm in'll hear me squeal! ;-) .  

God bless you, God bless me, and God bless and raise up everyone going through family sicknesses, loss, homelessness, all the tragedies that could happen to a just never know. So treat them all with kindness!
God Bless~~


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