NEXT STEPS

Written by Jodee McCabe    

Sunday, 02 November 2008 1:00 PM

Well, it has been an eventful week and yet little has been accomplished; or at least it feels like that.  Eventually, as I related in the last update, the oncologist did get the full report from the radiologist re: the CT Scan.  The results show that the Sutent is not adequately fighting off the cancer.  The doctor called twice last week to fill us in on the situation.  He explained that we needed to keep the appt. on Friday (i.e., not move it earlier)  b/c he wanted to consult with Dr. Logan, from I.U. Medical Center and he needed that time to be sure they could connect.  We were glad he was not SENDING us.  On Thurs. he called again to tell us that Dr. Logan had no other treatment options  to offer than when we spoke with him in June.  

Our oncologist had been made aware of two new studies that were using a drug called "Avastin".  One study was using Avastin in conjunction with another chemo drug and the second study only used Avastin.  He said Dan would need another MRI of his brain before he qualified for either study.  If there are new brain lesions, he would not be able to participate.  He felt there was no need to see him again until after the MRI was done but suggested we come in on Friday to speak to the research nurse who would inform us about the two studies so we could read the information carefully and have time to consider them before we had to make a decision

When we got to the appt. on Friday, one of the studies had already been closed out.  Some  folks would be disappointed but we are understanding this as an answer to your prayers for us: to keep our paths for treatment clear.  So now we wait some more.

Friday, the MRI will be done.  Tues. we will see the oncologist and talk about results and our options, if any.  IF the brain scan is clear, Wed. Dan will go for a bone scan.  That is for the benefit of the study (if he is eligible) so they will have a clear record of the starting point.  Also, if he qualifies for this study, he will discontinue the Sutent he is now taking and then wait for two weeks before beginning the new treatment.  This new drug will be administered IV once every other week.  After some time, results will be evaluated.  IF he is one of the few who is showing good response, those people will be randomly divided.  Some will be treated every week and others will remain with the once every OTHER week dosage.  In both cases the dosage is higher than previously used.  If you read the list of possible "side effects", you'd be worried.

In the meantime, Dan's pain has migrated from his flank down to his sacrum.  He has pretty much been on pain meds around the clock.  There are other areas that hurt but that is the major one.

It is very possible that Dan will not qualify for this study or that by the time we comply with all the tests, that it will be filled as well.  Even knowing that, it is hard to adequately prepare to HEAR it.  We though we were prepared for the results of the CT scan but discovered it is very hard to corral emotions.

Although the MRI will be done on Friday, we do not anticipate knowing anything until next Tues. (Nov. 11).  Although the wait seems long, I cannot imagine dealing with socialized medicine where you wait for months for diagnostic tests.  We are praying about that issue as well.

We also have increasing concerns about Dan's brother, David.  He has been having fainting spells at work and they have discovered his blood pressure is very low.  They took him off a medication he had been getting for Down's Dementia but that did not help his blood pressure go up to normal range.  They tried using a halter monitor to check his heart function, but he ended up breaking it.  We are guessing it will not be very long before we need to place him in a nursing home.  We are praying that God will grant David mercy and allow him to remain in the group home and sheltered workshop until the end of his days.

Please continue to pray for wisdom for the medical people; for wisdom/ discernment for us as we make decisions regarding their recommendations for both David and for Dan; and for that "Peace  that Passes Understanding" that flows out of total trust in our Savior and King, Jesus, and ALL that He has for us in this life and the next.