Since Michelle will commence her chemotherapy treatments next Tuesday afternoon, we wanted to hold our next prayer meeting on Monday evening. We will gather in our home at 6:30 PM: if you would like to synchronize your prayers with us from a distant location, 6:45 or 7:00 would be a good time to start.
As I noted in my last posting, Michelle has been experiencing pain related to an apparent tumor in her T11 vertebra. In the last few days this pain has increased, so an MRI scan was performed yesterday (Friday Jan 16). The scan revealed cancer both in the bone and in the marrow, but there was no nerve impingement present. In order to reduce related pain by reducing the size of these tumors, Michelle is scheduled for targeted radiation on Friday, January 23. If an earlier appointment opens up, we intend to move up her appointment.
In the mean time, Dr. Marschke told us to double Michelle's pain medication. So far the new level seems to be helping, but it is definitely affecting Michelle's alertness.
Saturday, January 17, 2009
Thursday, January 15, 2009
Houston, we have a plan! (and a schedule)
Greetings all!
The prayer service at our house Monday night was (to use a much-overemployed-but-very-apt superlative) AWESOME! Fifteen members of Michelle's prayer circle (if you pray for Michelle, you're in the circle - even if you just send positive thoughts her way, you're in the circle too) met in our home Monday night for spiritual readings, community prayer, laying on hands, and above all: Healing! It was a tremendously supporting, energizing, uplifting, inspiring event and we can't thank all of you enough - those present in person and those praying with us from distant locales. We are going to try to hold these prayer meetings every week, depending on Michelle's status. Watch the blog for announcements.
On Tuesday morning, Michelle and Bill went down to Denver for an appointment with Dr. Weekes. The blood tests showed that her bilirubin level, while much lower, is not low enough for the parameters of the clinical trial. Even if her levels were to get down that low, it is very unlikely they would stay there for long. The clinical trial is therefore off the table, and it's time to move forward with the FDA-approved "standard of care" chemotherapy for this particular cancer.
At the risk of getting too technical, here are a few words about bilirubin. One of the important jobs of the liver is to destroy red blood cells. The waste products from the destroyed cells are excreted in the form of bile, which enters the small intestine through the common bile duct. Cholangiocarcinoma, bile duct cancer, forms tumors in the bile duct itself which tends to create blockages, impeding or halting the flow of bile. The bile backs up into the liver and eventually enters the bloodstream, where it is called "bilirubin". All of us have some levels of bilirubin in our blood; the normal level is 1.2 (not sure of the units, but probably something like parts per million.) In Michelle's case, her bilirubin peaked around 7.5 immediately following the last ERCP (Jan 5) and was down to 2.8 on Tuesday. The study parameters require levels of 2.0 or below. Michelle's gastroenterologist said that level is probably unrealistic in her case.
Now for the plan.
On Wednesday we met with Dr. Robert F. Marschke from Front Ranger Cancer Specialists here in Fort Collins. We have been meeting with Dr. Marschke since December, using him as a sounding board and second opinion to balance the information we have been getting from the specialists at UCH. After reviewing our options with him, we decided to shift gears and asked Dr. Marschke to take the lead as Michelle's primary oncologist. There are several advantages to this.
First, we won't have to drive back and forth to Denver for treatments: FRCS is just 5 minutes from our house. this is a big deal since the primary side effect from chemo will be fatigue.
Anything we can do to minimize fatigue would be good.
Second, coordinating treatment between Denver and Fort Collins has been challenging, and the challenges would only get worse. Of course we would be more than happy to do whatever it takes to get Michelle the best treatment possible, but it looks like we can accomplish that right here in our home town.
Third, we really like Dr. Marschke. He is very caring and compassionate, and willing to listen to us and answer all our questions. When we pointed out a discrepancy between what we heard in Denver and what he told us, he immediately went to his computer, researched the question to make sure he had the absolutely latest information, and discussed the findings (which validated his position.)
The plan is to start chemotherapy with a drug called gemcitabine (aka Gemzar) next week. Treatments are scheduled every Tuesday afternoon (time varies) for the next 6 weeks. The next 2 weeks would be spent getting a PET scan, resting, and reviewing and updating the treatment plan. Assuming the therapy is working and Michelle is tolerating it well, we would start a new cycle of 3 weeks of treatment followed by one week of rest.
There is one other piece of news that we hadn't planned to share, but it may be more important than we thought. Late last week Dr. Marschke ordered a CT scan of Michelle's lungs to check for pulmonary embolisms (blood clots in the lungs) based on a new pain in her side. While no clots were found, and in fact a small clot noticed back in December had vanished, they did spot a probable new tumor on her T11 vertebra. We took this as simply more evidence of metastasis (spread of the cancer) which isn't news and doesn't change the treatment options. As it happens, this tumor bears watching because as it grows it can cause nerve problems with varied and unpredictable symptoms. If this tumor becomes a problem, the treatment will be palliative radiation to shrink it and alleviate symptoms. We'll keep you posted.
Thank you again for reading this blog and keeping us in your thoughts and prayers. They really do make a difference.
The prayer service at our house Monday night was (to use a much-overemployed-but-very-apt superlative) AWESOME! Fifteen members of Michelle's prayer circle (if you pray for Michelle, you're in the circle - even if you just send positive thoughts her way, you're in the circle too) met in our home Monday night for spiritual readings, community prayer, laying on hands, and above all: Healing! It was a tremendously supporting, energizing, uplifting, inspiring event and we can't thank all of you enough - those present in person and those praying with us from distant locales. We are going to try to hold these prayer meetings every week, depending on Michelle's status. Watch the blog for announcements.
On Tuesday morning, Michelle and Bill went down to Denver for an appointment with Dr. Weekes. The blood tests showed that her bilirubin level, while much lower, is not low enough for the parameters of the clinical trial. Even if her levels were to get down that low, it is very unlikely they would stay there for long. The clinical trial is therefore off the table, and it's time to move forward with the FDA-approved "standard of care" chemotherapy for this particular cancer.
At the risk of getting too technical, here are a few words about bilirubin. One of the important jobs of the liver is to destroy red blood cells. The waste products from the destroyed cells are excreted in the form of bile, which enters the small intestine through the common bile duct. Cholangiocarcinoma, bile duct cancer, forms tumors in the bile duct itself which tends to create blockages, impeding or halting the flow of bile. The bile backs up into the liver and eventually enters the bloodstream, where it is called "bilirubin". All of us have some levels of bilirubin in our blood; the normal level is 1.2 (not sure of the units, but probably something like parts per million.) In Michelle's case, her bilirubin peaked around 7.5 immediately following the last ERCP (Jan 5) and was down to 2.8 on Tuesday. The study parameters require levels of 2.0 or below. Michelle's gastroenterologist said that level is probably unrealistic in her case.
Now for the plan.
On Wednesday we met with Dr. Robert F. Marschke from Front Ranger Cancer Specialists here in Fort Collins. We have been meeting with Dr. Marschke since December, using him as a sounding board and second opinion to balance the information we have been getting from the specialists at UCH. After reviewing our options with him, we decided to shift gears and asked Dr. Marschke to take the lead as Michelle's primary oncologist. There are several advantages to this.
First, we won't have to drive back and forth to Denver for treatments: FRCS is just 5 minutes from our house. this is a big deal since the primary side effect from chemo will be fatigue.
Anything we can do to minimize fatigue would be good.
Second, coordinating treatment between Denver and Fort Collins has been challenging, and the challenges would only get worse. Of course we would be more than happy to do whatever it takes to get Michelle the best treatment possible, but it looks like we can accomplish that right here in our home town.
Third, we really like Dr. Marschke. He is very caring and compassionate, and willing to listen to us and answer all our questions. When we pointed out a discrepancy between what we heard in Denver and what he told us, he immediately went to his computer, researched the question to make sure he had the absolutely latest information, and discussed the findings (which validated his position.)
The plan is to start chemotherapy with a drug called gemcitabine (aka Gemzar) next week. Treatments are scheduled every Tuesday afternoon (time varies) for the next 6 weeks. The next 2 weeks would be spent getting a PET scan, resting, and reviewing and updating the treatment plan. Assuming the therapy is working and Michelle is tolerating it well, we would start a new cycle of 3 weeks of treatment followed by one week of rest.
There is one other piece of news that we hadn't planned to share, but it may be more important than we thought. Late last week Dr. Marschke ordered a CT scan of Michelle's lungs to check for pulmonary embolisms (blood clots in the lungs) based on a new pain in her side. While no clots were found, and in fact a small clot noticed back in December had vanished, they did spot a probable new tumor on her T11 vertebra. We took this as simply more evidence of metastasis (spread of the cancer) which isn't news and doesn't change the treatment options. As it happens, this tumor bears watching because as it grows it can cause nerve problems with varied and unpredictable symptoms. If this tumor becomes a problem, the treatment will be palliative radiation to shrink it and alleviate symptoms. We'll keep you posted.
Thank you again for reading this blog and keeping us in your thoughts and prayers. They really do make a difference.
Sunday, January 11, 2009
Please join us in Prayer Monday Evening, 1/12
It's been almost a week since the procedure to refresh Michelle's bile duct stents, and all indications are the procedure was successful. Her color is better, and she seems to be much more comfortable. The pain and nausea have let up a bit, and we've been able to cut her breakthrough pain medication in half. Her color is improving (much less yellow today) and the itchiness is reduced, so hopefully we'll get the green light to start chemo treatments when we meet with oncologist Dr. Weekes in Denver on Tuesday morning.
I know this is late notice, but we have organized a healing prayer meeting in our home tomorrow evening, Monday January 12. Karen Lowe, our close friend and former pastor of Christ United Methodist Church will be leading the meeting, with the help of Bob Simpson, another close friend who was also a pastor at CUMC. We will be praying over Michelle and participating in several healing rituals. Our focus will be on asking God for miraculous healing.
For those of you who wish to be prayer warriors for Michelle but are unable to attend on Monday, please join us in prayer from wherever you happen to be at 7:00 PM Mountain Time on Monday. If you are in the area and would like to participate in person, please call for specifics. We made several direct invitations, but welcome anyone who would like to pray with us.
I know this is late notice, but we have organized a healing prayer meeting in our home tomorrow evening, Monday January 12. Karen Lowe, our close friend and former pastor of Christ United Methodist Church will be leading the meeting, with the help of Bob Simpson, another close friend who was also a pastor at CUMC. We will be praying over Michelle and participating in several healing rituals. Our focus will be on asking God for miraculous healing.
For those of you who wish to be prayer warriors for Michelle but are unable to attend on Monday, please join us in prayer from wherever you happen to be at 7:00 PM Mountain Time on Monday. If you are in the area and would like to participate in person, please call for specifics. We made several direct invitations, but welcome anyone who would like to pray with us.
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