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We are back home again after one of our quickest trips. We left later than usual yesterday because I had to put a new battery in the car. We're just thankful it didn't happen after we had already left. We just passed 140,000 miles last month, so we had it in the shop a couple of weeks ago for a check-up. It got a clean bill of health. Has this not happened to all of you?: the battery had a free-three-year-replacement warranty, and we had bought it three years and one month ago. It's a conspiracy! They did give us a huge discount, as it was an eight-year battery. Anyway, we made it to SA and back with no problems.

Today was an easy day at the clinic. In at 9:00 and out at 11:30. Relatively routine. Short visit with the PA. Blood work good. Another week's supply of LDE225. Next week's appointment on Monday will include blood work, a PET scan, followed by a CT scan, my strange breakfast, an appointment with Dr. Mita, then back to the treatment room to wait for two week's supply of pills. It will be a rather long day...

We did discuss the protocol today and found out that the 20% growth standard applies to this experimental drug as well. If measurements from new CT scans show more than 20% growth from the baseline scans (from May), or if any new tumors appear, I will not be able to continue on this trial. This is basically the same for just about all clinical trial drugs. We continue to trust God and His good plan for our lives.

Please pray for Helen's niece, Angela. She is having at least part of her thyroid removed tomorrow. There is a possibility that it could be malignant; God knows and He has a good plan for her. Also, Helen's sister, Diane, is having surgery to try to correct complications from diverticulitis on Wednesday. It is quite a difficult surgery. Pray that God will enable the doctors to accomplish what needs to be done.

We are thankful for all of your prayers and concern.

Kenny and Helen

A lot of writing...not much news. Hey, I ought to start a newspaper!

Well, it's Monday, and you wouldn't believe where we are...yeah, you guessed it--San Antonio.  This is day 15 of my second cycle on LDE225.  I have taken the drug for 43 days, and so far I have tolerated it well.  Thus far everyone who has taken it seems to be handling it OK (it is still very early), so they are getting ready to double the dosage to the next several patients.  The verdict is still out as to how effectively it is dealing with cancer.

There is not much news to pass on, which is, in and of itself, good news.  Although "status quo" takes a hit most of the time, in this case, it's good.  We'll take it.  We are looking forward to slowing down just a bit, Lord willing, in a few weeks.  God's timing in the past seven weeks could not have been better for this part of the journey, as our weekly trips hit just as Helen's summer break arrived.  We continue to trust Him with the details of our lives.  He really knows what He's doing.

We went to our nephew's wedding in Comanche Saturday before visiting Tom and Mollie in Austin and then heading here.  Weddings are so much fun!  Almost everyone from Helen's side of the family was there.  We all get along so well, so we had a nice time.  Stefani caught the bridal bouquet, so we will get announcements out to you all soon.   :)

Helen's family will be busy in the next couple of weeks.  Her mother is having surgery this week, and her sister Diane and her niece Angela both have operations scheduled for next week.  Please pray for them.

We missed being at church yesterday.  It just ain't right when we ain't able to go.  We appreciate so much everyone who has filled in for us when we have missed.

Tomorrow should be quick and painless at the clinic.  Well, at least painless.  They are so busy, especially on Mondays and Tuesdays.  If you think about it, it's sad when you see so many who are suffering from cancer.  But it is also good that there is a wonderful place for them to go for help like CTRC.  

As I finish this post, it is beginning to look like it might rain.  I think I'll go outside and watch it. 

Thanks for checking in.  We love you all.

Kenny and Helen

Scans and Schedules

We are sitting in the treatment room at CTRC awaiting my medicine for this week.  We have had the blood work and have seen the PA.  During the first month of this treatment, I have had a headache almost every day.  However, the past week I did not have a headache all week!  Thank You, God!  We did get the report about the PET scan from last week.  While there are no new areas for concern found, the larger "nodules" appear to have grown slightly.  Only slightly, with not much change.  We are encouraged that there seems to be no signs of aggressiveness at this point. 

We will head back home this afternoon.  We are scheduled to be back the next three Mondays.  Following that, it should slow to every other week.  All of that is contingent on our staying on this clinical trial.  The next CT scan is sometime around August 3rd.

Thanks for your love and support.

Quick update...

A quick update about the PET scan...there is no update about the PET scan.

The clinical trial I am in uses PET scans, but not for "re-staging", so there was no rush for the results.  We are spoiled in that just about every scan we have had, we have gotten results within hours on the same day.  Because that was not necessary on this study, it will take the normal length of time to get a report.  If I understand things right, the CT scans that I will have every other cycle (every eight weeks) will be handled more quickly.  We may not hear anything until we return on Monday.  Whenever we do hear, we will let you know in this blog.

This blog is not intended to keep you from calling us.  We appreciate phone calls, as well as your comments here.  If you feel impressed to call, or if you are just curious about something we are doing or going through, please do so.  We are grateful for all of you.

Our next visit will be just for Monday, Lord willing, and should be relatively easy.  

Well, lunch is just about over, and I must be getting back to work.

TTFN

Kenny

Misuse and Abuse (I Have to Pay for This!?)

Today was another long Monday at CTRC.  Cycle 2 of treatment with LDE225 began today.  We had blood draws scheduled for 8:00, so we left the house at 7:15.  On good days when traffic is perfect, it is a 25-minute drive.  During busier mornings or afternoon hours, it can take as long as an hour.  Life in the big city...

My PET scan was scheduled for 8:30.  To begin, the "scannee" (a word I just made up) is injected with a radioactive isotope and secluded in a small room with a lead door and lead walls for an hour to allow the material to work its way sufficiently through the body.  Then the scans begin, which take about 40 minutes to complete while the patient remains motionless.  Why do you always feel like there is a fly on your nose at times like these?

This was followed by my ritualistic breakfast, with which I literally broke my fast--three pieces of toast and jelly washed down with OJ.  Yummy, yummy!  I have actually gained four or five pounds in the last month.  Helen says it is because of this breakfast regimen.

We were happy to see Dr. Mita next.  She always brings a relaxed calmness into the examination room.  While she doesn't always have a good report to discuss, she provides positive support and insight.  My blood work looked OK, with nothing unusual.  She had not seen the scans yet, so we didn't get any results today.  We will see those tomorrow.

A skin biopsy was next, a 4-mm skin sample taken from my shoulder blade.  I begged them to put me to sleep for this, but torture seemed to be the order of the day.  Actually, the only thing I felt was the needle prick when they shot lidocaine in my back to deaden it.  The rest was pretty much painless.

Then came the main event--the hair follicle samples, otherwise known as CTRC waterboarding. It took probably 25 tries to find 5 hair samples with suitable follicle bulbs attached.  Each pluck is painstakingly performed to avoid breaking the hair off.  Apparently, my hair has not quite recovered from the damage caused by chemotherapy in March.

My port had not been accessed for five weeks, so the next blood samples were taken from it.  It has to be "flushed" at least every six weeks.  LDE225 is in capsule form, so my port does not have to be used for treatment.  After receiving another week's supply of the drug, we were finally free to make our escape.  

We were blessed to see more rain at our place in Universal City.  The San Antonio area has been hotter and drier than Big Spring this year.  We really, really enjoyed the rain at home the past couple of days.  I am still feeling well, with the exception of minor headaches almost every day.  We are thankful for God's sustaining power in our daily lives. 

Later,

Kenny and Helen