NEW MED OPTION

Friday we got our monthly shot, which we always look forward to.  Judy's symptoms usually get worse toward the end of the month.  We are so thankful for the Sandostaten shot.  It is the reason the tumor growth has been kept to a minimum.  However, there has been an increase in the frequency of some flushing and abdominal pain since our last doctor visit two months ago.  Dr. McCollum thinks it is time to add another med to our treatment.  He feels certain the increase is coming from the cluster of cancerous lymph nodes attached to the small intestine.
We previously had told you about a new drug not yet approved by Medicare, except in a trial study.  We opted out of the trial, since we would have to stop the monthly Sandostaten shot, and that could cause some severe symptoms.  We are not going to do anything that will slow down the "Energize Bunny".  But, some of  Dr. McCollum's patients have been able to obtain approval for use of  the new drug from Medicare outside the trial.  He wants us to consider adding the drug, Afinitor and taking the prescription  to Baylor's pharmacy and seeing if Medicare will let it go through.
Your assignment, if you should to accept, will be to pray that Medicare will approve payment for Afinitor.  Otherwise, we will have to ask 30 of you to donate $100. per month to help pay for the monthly cost!  Just kidding.  But seriously now:  we do covet your prayers for this new treatment's approval from Medicare.  We believe that this is where we need to go from here.  Also, please pray that Judy will get the proper nutrition to help her gain some weight (who ever heard of a woman asking for weight gain??).
We know without doubt, that we are not on this journey for any other reason but to glorify God by following Him without question.  It's taken a while to get there, but we have this wonderful assurance that by allowing God to stay in charge, the life He gives us here on earth pales in comparison to what he has promised "to those who are called according to His purposes"
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We love everyone of you,

Judy and Ronnie

UPDATE LONG OVERDUE

I apologize for waiting so long to post.  The last meeting with the doctor was good.  There was no appreciable  increase in the tumors and the Dr was very pleased with Judy's condition.

He surprised us with the news that he has been using a procedure previously used only in typical liver cancer,  to reduce those types tumors.  He has been applying that procedure to neuroendocrine tumors like Judy has, with good results; even in some cases, reducing the tumors.  Since Judy's symptoms are sort of sleight at this point, he wants to hold off with the procedure for now.  If her symptoms increase to two or three times a week, he will recommend the procedure, which is a catheter through the groin, spraying the liver with a resin-like substance which has some chemotherapy in the mix.

We are happy with the doctor's assessment, and will carry on as usual.  Thank you all for your thoughts and your prayers.  To God always be the glory.

Surgery Results

Well, I'm sure most of you have heard bits and pieces about Judy's surgery. So, I will start at the top and tell it all. On Thursday, the Surgeon attempted to look for the problem using a laparoscope, but was unable to see anything. He did about a 4 inch incision and was able to uncover the culprit that was causing the symptoms...a piece of her small intestine was stuck to the front of her abdominal wall. He snipped it loose and then had to do a resection of about 3 inches. While viewing the small intestine, he became concerned that about half the intestine appeared to have a blueish color, making him think there was a restricted blood flow to the area. He called in a Cardiovascular Surgeon and it was decided to do a CT Angiogram on Friday morning. The CT Scan was done about 10 AM and we heard from the team that afternoon. The consensus was that worst case, there may be minimal restriction of blood flow, that would not have been the cause of Judy's symptoms. Our Oncology Surgeon feels like the resection will relieve the symptoms. So, here we are at 8PM on Saturday, getting ready to go home tomorrow afternoon. Wow, what a crazy week this has been. Satan has been attacking us "big-time" the last couple of weeks. Now, Jesus tells us, "My children, just keep your eyes on Me and watch Me work a miracle on your behalf". Thank you Jesus! We love every one of you and cherish your love and prayers. Judy and Ronnie

Surgery

Judy will enter Baylor Hospital at 2PM on Thursday for exploratory surgery. She has been having symptoms similar to those prior to her previous resection. I will blog after the surgery, probably Thursday evening or Friday. Thank you all for your continued prayer and encouragement. Ronnie and Judy

Clinical Trial

As many of you know, today was the day to decide about the Clinical Trial, using the new drug, Everoline. The Dr finally got the protacol for the study two weeks ago. Surprisingly, this study requires that the patient cannot be taking any other drugs during the trial. The doctor was upset about that, as were we. However, our "ace in the hole" has always been the Sandostaten shot. That's what has kept the tumors in check so far. We will continue our present regimen. We just got back from Colorado and Judy did remarkably well. Our next appointment will be in four weeks, and we will have a CT Scan, repeating every four weeks thereafter. We have only had a 20% tumor growth since diagnosis. We praise God for His strength to walk this path. He's holding our hand all the way. God bless all of you who have been faithful in prayer for us. Judy and Ronnie

FURTHER TESTS

Well, we still don't know if Medicare will pay for the new drug. Although we may not go that route, we still need to know if that's an option. The clinical study will be enrolling in about two weeks or so. It will be a 2/1 blind study, meaning two of three will get the real drug and one will get a placebo. If we go that way, and don't tolerate the side effects well, we can just drop out of the study at any time. Judy is not nearly ready to limit her activities. She feels she has much work to do yetand can't let drugs keep her from it! At our appointment with the doctor, while listening to Judy's heart, he heard a slight heart murmer. He said that sometimes the harmones emitted from the tumors will go to the right side of the heart and mess with the valves. He's not really suggesting this, but he wants us to do an echo-cardiogram to check it out. We should have that done in the next week or two. So, our next appointment with the Oncologist is August 6. Then, we should know all we need to know to make a decision about further treatment. Thank all of you again for your unfailing prayers and heartfelt concerns. WE love you very much. Judy and Ronnie

DECISIONS

OK all you prayer warriors, we need your help. We will be seeing our local Oncologist on Friday, and we will need to make a decision. We will have three choices concerning Judy's treatment. What we desparatly want is for our choice to be in perfectly in harmony with what God wants. By Friday, we should know whether Medicare will pay for the new drug (Everoline). If they will, then our choices will be: 1) Take the new drug along with the monthly shot that Judy has been taking all along. 2) Sign up for a Clinical Study using the same drug, but with only a 50/50 chance that we will get the drug versus a placebo. 3) Do nothing now, which our local Doc believes would be the proper thing to do, since the progression of the tumors is only up by 20%. Also, we could possibly just increase the current dosage of the Sandostaten shot. A large consideration in choosing the first or second option is, for the patients currently taking the Everoline, either full time or in the study, only 5% have reported positive results, There are also side effects that Judy doesn't have to deal with now. So, if we go with 1 or 2, and the side effects begin to drag Judy down, then we will cease the drug. Judy is not nearly ready to be slowed down or hampered. Please pray that will know the mind of God and make the decision to follow His path, wherever it may lead. Thank you. Judy and Ronnie