Results and reports...

Today our research nurse, Pat, called to discuss the results from the previous days' tests.  The MUGA (heart) scan showed little change from the one I had two months ago.  My blood work was acceptable for the trial.  The PET CT scan was stable in comparison to the previous one from January.  My bone density is overall normal.  The regular CT scans showed "slight increase in size of multiple nodules" in my lungs, but no new tumors anywhere.   We feel good about these and are excited that there is nothing new that has turned up.

God willing, we will head to San Antonio on Sunday and I'll receive my first dose of LDE225 on Monday morning.  That day will be an eleven hour stay at the clinic, as blood work and EKGs will be done all day.  We will have to return to the clinic the next four days for more blood work and EKGs.  If everything is OK, I will begin taking the drug every day the following Monday.

LDE225 has been given to five patients thus far, four in the US and one in Spain.  They were the first ever humans, receiving the minimum dose, and so far they have tolerated it well.  In a Phase I trial like this, the primary goal is to determine if the drug can be taken safely by humans and, if so, how much can be tolerated.  Because I'm in the second tier, or group, of patients, I'll receive twice the dose that the first group did.  As far as we know, I will be able to continue taking the drug for as long as I tolerate it, for as long as I am receiving a benefit from it, and as long as I want to.  This drug is not a "chemo" drug, and they do not believe there will be very many detrimental effects from it.  I guess we'll soon know.

The next several weeks will be filled with lots of trips and lots of time spent in San Antonio.  The timing of it will really be in Helen's favor, as school is over tomorrow for the summer.  We enjoy being together and are incredibly blessed to have such a great home away from home with her sister and brother-in-law.  We are thankful for God's sustaining power and never-failing provision in our lives.

We love all of you,

Kenny and Helen

Back home again!

Well, it's been a couple of pretty long days...I feel scanned out.  I've had almost every scan known to man in the past two days (not really--it just seems that way).  God has blessed in so many ways.  Somehow, my last scan today was moved up almost an hour, and we were able to leave and head back for home about an hour earlier than we anticipated.  We talked to Janis a couple of hours out of town, and she told us that a pretty severe storm with large hail hit Boerne probably less than an hour after we left there.  If we had been there when we thought we were going to be there, we may have sustained damage.  Thank you, Lord!

I was joking about being worried about the hair follicle samples that had to be taken, taking into account my hairless dome.  On Tuesday when it was time, I thought I was being tortured by Jack Bauer (of "24" fame).  They needed five samples with good follicles intact.  They started with my eyebrows, but the follicle was not acceptable, so they went next to my mustache.  Although the sample was a good one, they decided to try elsewhere when they saw the tears in my eyes.  They were able to find enough chest hairs (yes, I used to have some before this).  I told Helen I would have thought the chest hair removal hurt bad if they hadn't already plucked a mustache hair.

I'm on the schedule for taking the drug for the first time on Monday, barring something turning up on the MUGA (heart) scan or my blood work that would exclude me from being accepted in the trial.  We have not gotten any results from any of the scans yet.  We expect to hear from our research nurse tomorrow.  

It's nice to be home again.  We are very tired but glad we came home today.  We will be heading back Sunday, and this time will have to stay for eight or nine days.  We're both going to work in the morning, so I will wrap this up.  I'll have more info about the drug and our schedule in the next few days, Lord willing.

Tfyewap! (thanks for your encouraging words and prayers!)

Love you all,

Kenny

Schedule Confirmed...

Well, we finally have a schedule for next week.  We will have a busy two days at CTRC doing eligibility screening for the new trial.  On Tuesday, we'll begin with a meeting with the research nurse for a couple of hours.  Following that, I will have to have a skin biopsy taken.  Then at 4:00, I will have a DEXA scan, which assesses bone densities.  I have never had one of these, so I'm not sure what to expect.  On Wednesday, at 10:40 I'll have a MUGA scan, which assesses heart function, a PET scan at 12:00, and a CT scan at 4:00.  All of this, plus the usual blood and urine tests.  I asked the scheduler if there was anything else she could schedule me for, like maybe a surgery or something, since I had an hour or two open on Wednesday morning.  :)  Anyway, it's good to finally know when we are going to do what next week.  It will be nice to not have to leave on Sunday this time.  Because of the holiday, everything is shifted a day.

We continue to trust God and His plan for us.  Please continue to lift us up in your prayers as we approach all of this testing.  

God Bless,

Kenny and Helen

Rainy Relay...New Treatment Info

IT'S RELAY TIME!!  We are at home watching the remnants of quite a storm that passed over.   We wimped out after the Survivors' Walk and left before the rain and lightning came.  We just drove back by the stadium, and it looked like many had moved into the ATC building.  The field lights were off, but there were still quite a number of cars in the parking areas.  Although we severely need the rain, I was looking forward to the Luminaria.  I'm assuming that most or all of the sacks were wiped out by the rain.  The Luminaria is always a great time to reflect and remember those who have gone before us as well as those who continue to fight with us in this battle.  I thought a lot about Danny Weir today.  He showed all of us how to fight with dignity and honor.

I know some of you made a donation for luminaria in my name.  I don't know who you all are, but I appreciate your love and support.  It means a lot to me.

I finally talked to my study nurse in San Antonio today.  We have a tentative schedule for now. I will be doing eligibility screening (scans, blood work, etc.) during the week of the 26th for a couple of days.  If everything is acceptable,  I should receive the drug, a pill, for the first time around the first of June, followed by extensive blood work for five days.  The following week I would begin taking the drug once daily.  We will share more details as we learn more.

Once again, thank you all for your comments, prayer support, and everything!

God is Good....

Kenny

Change of Plans

Our plans have changed for the next few days...after much prayer and seeking, we have told Dr. Mita that we have decided to try one of the clinical trials she had discussed with us.  We feel a peace that this is the next step we should take.  Our Monday appointment with her has been cancelled, as it is no longer necessary.  We don't know when the next appointment will be.  We should find out more next week, as well as find out more details about a possible schedule.  As with all clinical trials, there will be required eligibility testing that will need to be done prior to beginning treatments.

This is a Phase I trial, meaning that participants in this trial will be the first humans to ever receive this experimental drug, called LDE225.  It is a pill that is taken once daily.  In the first month of treatment, we would have to spend a lot of time at CTRC.  The months following would require fewer visits.  While it is not certain what all of the side effects would be likely, they do have a fairly good idea based on laboratory experiments with animals.   

We are planning to see Helen's sister, Diane, in the next few days.  She is at Scott & White in Temple with a perforated colon.  Please remember her in your prayers.

Thanks to everyone for just being there.  God is Good!

Love, 

Kenny and Helen

Busy is Good...

Well, it's been a week since we posted here.   Our lives have been so busy with so many trips and work and everything...it has been a real challenge to keep up with everything.  Actually, we're not really keeping up with everything, but we're doing our best.  It's great to be alive and have things to keep up with.  I am feeling well.  We are grateful for every day God blesses us with.

Not much has changed since our last post.  We have emailed our doctor some questions we have about treatment options.  At this time, we still don't know which direction we will go.  We continue to trust that God will reveal whatever He knows we need to know whenever His time is right, however He decides to do so. He is the One in control.  We are glad of that fact!  Pray that our eyes and hearts will be sensitive to His guidance.  

I would love to be able to respond to all of your comments on this blog.  They have continually been such a blessing to us!  All of them are special to us.  You don't know how much every one of them have meant to us!

We are blessed!

Kenny and Helen