Sunday, July 8, 2012
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
Wednesday, July 4, 2012
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
Sunday, June 17, 2012
Meeting with Oncologist
We talked with Dr McCullom on Friday nite. After consulting with Sr. Phan at MD Anderson,he gave us his opinion as to further treatment options. He feels as though we could continue our current regimen, without adding any new drug. He would monitor our progress with quarterly scans and blood work.
On the other hand, Dr Phan is following MDA protocol by recommending additional treatment, based on the 20% progression of the tumors over the past 18 months. Therefore, we simply have a difference of opinion between two highly trained professionals.
As we mentioned previously, a clinical trial, using the drug, Everolimus will be started here in Dallas next month. Our decision has been to wait to get the info for the protocol for the trial before making a final decision. We feel the waiting time for a decision is not critical. So, we should have substantive news in the next couple of weeks.
Again, Judy and I cannot tell you how much your concern and prayers mean to us. To God be the glory.
Judy and Ronnie
Sunday, June 3, 2012
Further Developments
Well, we took our results and recommendations from Dr. Phan in Houston, and we went to see our local Oncologist Dr. McCollum. He's not so sure that we need to do anything at the moment. He is going to contact Dr. Phan this week and see what her reason is to suggest additional meds at this time. Then, we will get back with Dr. Mc within the next week or two to determine what we are going to do.
If we elect to try for the Everolimus medication, pending Medicare approval, we should know in the next few weeks. If not, we could still possibly get the the drug in a clinical study, administered here in Dallas. That's the one that is 1/1 or 2/1 med versus a placebo. The good news is that we don't need to do anything immediately.
Please pray for wisdom to know what God wants...isn't that really the only thing that matters? God bless all out partners,
Judy and Ronnie
Tuesday, May 29, 2012
NEW TREATMENT OPTIONS
Well, we just pulled in from M D Anderson, and we are not particularly happy with the news we got from Dr. Phan.
The biopsy shows the lymph node in Judy's neck is positive for Neuroendocrine Carcinoma. We hoped for a negative result, but if it had to be cancer, we are glad it is at least the same kind we already have. But, the progression of the cancer indicates that the current treatment is no longer effective. We will need to add another element to our treatment regimin. Now. here's where our choice of treatment alternatives becomes tricky.
The best choice for an addition to the Sandostaten shot is a drug called Everolimus. It has been effective in about 5% of the patients who are on it (that in itself, is disapointing to us). Even at that, the drug has not been approved for Carcinoma. So, there is a 50/50 chance that Medicare will not approve payment for the perscription. The cost is $30,000.00 per month. So, if Medicare dosen't cover it, we certainly can't afford that.
Another possibility is to take a drug called Interfuron. The results are not much better, but the side effects are much more severe, causing fatigue, constant flu-like symptoms, and a good possibility of causing Judy to become a diabetic.
Finally, there are a couple of Clinical Trials using the Everolimus drug, but the one has half the participants on the drug and the other half on a placebo. The other two trials are just in Phase 1 or 2, which means they have very little data to start with. Additionally, the trials will be administered at MDA, and will mean going to Houston every 2 to 3 weeks.
Our prayer is that Medicare will approve the Everolimus, and we can start that treatment right away, here in Dallas. Please pray with us to that end. If God has a different idea, we are ready to follow, no matter where it may take us. His way is always the best way.
Your Brother and Sister in Christ,
Ronnie and Judy
Saturday, April 7, 2012
GUATEMALA
Judy and I went to Guatemala with a group called Serving Him. We also did this same trip last year. As you know, Judy had surgery on Feb. 13 and I have been dealing with an angry sciatic nerve. We were anxious about our chances of making the trip, but God intended for us to go...thank you Lord. I didn't perform all that well, but Judy made everybody look weak with her super energy.
We were privileged to work with a wonderful, Godly team of Dentists, Doctors, and nurses, who pulled hundreds of bad teeth and performed 54 surgeries for the indigenous Mayan descendants. We also built stoves, latrines, and delivered about 400 food baskets to some very impoverished people. To top it all off, we saw several children and adults come to the saving knowledge of Jesus Christ!
Since her surgery, Judy has not experienced pain and has even gained seven pounds! We want to thank all of you for your continued prayers. Please also pray for our good friend, Jan Richardson, who was in a horrendous auto accident a couple of weeks ago. They had to amputate her right foot yesterday. Many other badly broken bones will keep her in Baylor Hospital for the next month or so.
God is good...His love is everlasting. Come what may, He will always be by our side. What a wonderful God we serve.
Judy and Ronnie
We were privileged to work with a wonderful, Godly team of Dentists, Doctors, and nurses, who pulled hundreds of bad teeth and performed 54 surgeries for the indigenous Mayan descendants. We also built stoves, latrines, and delivered about 400 food baskets to some very impoverished people. To top it all off, we saw several children and adults come to the saving knowledge of Jesus Christ!
Since her surgery, Judy has not experienced pain and has even gained seven pounds! We want to thank all of you for your continued prayers. Please also pray for our good friend, Jan Richardson, who was in a horrendous auto accident a couple of weeks ago. They had to amputate her right foot yesterday. Many other badly broken bones will keep her in Baylor Hospital for the next month or so.
God is good...His love is everlasting. Come what may, He will always be by our side. What a wonderful God we serve.
Judy and Ronnie
Tuesday, February 28, 2012
POST OP WITH SURGEON
We met with the surgeon yesterday and went over the pathology report and surgery notes.
They removed more than we first thought. Along with 12 inches of small intestine, they also took 6 lymph nodes around the tumor. The pathology reported they were all neuroendocrin carcinoma. It also showed additional cells in the area around the small bowel. That was a surprise to us...The surgeon said that it would be too extensive to try to get all of it. Nevertheless, we accomplished our goal of getting rid of the bad symptoms that Judy had been experiencing.
Recovery has been quick and encouraging...Judy has already gone back to work. Who wudda thought it? We will meet again with our Oncologist next week to go over all this and adjust the medication, if necessary. We both feel a renewed excitement going forward, ready to see what marvelous blessings God has in store for us.
Again we never want to fail to thank all of you for your prayer support. Will report again when anything new comes up.
They removed more than we first thought. Along with 12 inches of small intestine, they also took 6 lymph nodes around the tumor. The pathology reported they were all neuroendocrin carcinoma. It also showed additional cells in the area around the small bowel. That was a surprise to us...The surgeon said that it would be too extensive to try to get all of it. Nevertheless, we accomplished our goal of getting rid of the bad symptoms that Judy had been experiencing.
Recovery has been quick and encouraging...Judy has already gone back to work. Who wudda thought it? We will meet again with our Oncologist next week to go over all this and adjust the medication, if necessary. We both feel a renewed excitement going forward, ready to see what marvelous blessings God has in store for us.
Again we never want to fail to thank all of you for your prayer support. Will report again when anything new comes up.
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