We saw Dr. Weekes, the CU Denver oncologist, today. He reviewed the PET scan results and after consultation with Dr. Cavanaugh the radiation oncologist, told us they both agree that the cancer has metastasized to her liver. A lesion is visible on her liver, plus fluid where it shouldn't be in her pelvis, and fluid in the pleural cavity near each lung.
While each of these findings could have alternate explanations, the chances of all 3 occurring at this time from other causes and in the presence of the cellular evidence from the bile duct are astronomical at best. Additional diagnostic procedures (MRI, liver biopsy, lung fluid biopsy) could be conducted to unequivocally establish the diagnosis, but the treatment options would not change. The doctors' opinion is that it is better to get started on treatment rather than spend another month doing tests to confirm what they already believe.
The treatment strategy described last week (when we believed the cancer had not spread) was focused on curing the cancer with aggressive radiation and chemo. The strategy for treating metasatic disease (stage 4 cancer) is to focus on keeping Michelle as comfortable as possible while extending her life as much as we can. The primary focus will be on systemic chemotherapy, with radiation only if it can help alleviate specific symptoms.
We are considering participation in a clinical trial at CU Denver, which would require weekly office visits and IV treatments 3 of every 4 weeks at the CU Denver Hospital 75 minutes from home. The course of treatment also includes 2 other oral medications Michelle could take at home. The main difference between the clinical trial and the FDA approved "standard of care" is the addition of a new drug. Results from the trial have exceeded their expectations so far, but we don't have statistics. If we decide on the "standard of care" treatment, all office visits and IV treatments could be done in Fort Collins.
Michelle has an appointment tomorrow with Ft. Collins oncologist Dr. Marschke to hear his take on the PET scan findings and discuss options from his perspective. Dr. Weekes encouraged us to keep Dr. Marschke involved, even if we choose the clinical trial.
Meanwhile, jaundice has again reared its nasty, itchy, yellow head. We noticed Michelle was starting to turn yellow again Sunday evening, and last night the itching returned. Her labs from Friday indicate her bilirubin level has started to climb again. Since they can't start the chemo (or at least the clinical trial we are seriously considering) until her bili levels come down, Dr. Weekes contacted Dr. Chen (who is currently on vacation - amazing how the right doctor can make things happen immediately) and got him to move up the ERCP schedule to this Friday instead of waiting until January 5. The likelihood is that the stent in Michelle's bile duct is breaking down or has become blocked and needs to be refreshed.
We also noticed Michelle is having difficulty breathing in the evening and at night. We were warned that this might happen, so we have retained the oxygen tanks and concentrator. Her breathing returned to normal Sunday night when we restarted the O2, and we used it again last night.
We've really been feeling the love from all of you recently. Our kitchen and dining room look like a miniature florist shop, and we've been receiving much appreciated cards and emails with warm wishes and prayers. A neighbor brought over a pan of lasagna and a bowl of fresh fruit. A dear friend from Michelle's work brought his famous home-made pretzels, twice! And several people from Bill's work sent a care package from Omaha Steak company which should last us for several meals. Thank you all so very much. It's hard to express how gratifying it is to find out how well we are loved by the people in our lives.
Michelle has started what she calls her "healing wall". She printed 8x10 pictures of friends and family members who have fought the good fight against cancer and other serious diseases, and who now serve as an inspiration to her in her battle. We may be hearing bad news, and we know there is a tough road ahead, but with your support, God's grace, and Michelle's deep wells of strength, courage, and faith, we will get through this.
Tuesday, December 23, 2008
Friday, December 19, 2008
PET Scan and NO MORE OXYGEN TANK!
Today, Friday December 19, Michelle had her first PET/CT scan. This is a whole-body diagnostic scan which enables detection of cancer anywhere in the body. The oncologists are waiting for the results of this test (to identify any spread of the cancer) to finalize the treatment plan and set a schedule. Our next oncology appointment is Tuesday, 12/22.
After the PET scan we visited out Internist and tested Michelle's oxygen levels. Everything seems back to normal, so the doctor said she can discontinue the oxygen, but keep it around for the weekend in case she has problems.
After the PET scan we visited out Internist and tested Michelle's oxygen levels. Everything seems back to normal, so the doctor said she can discontinue the oxygen, but keep it around for the weekend in case she has problems.
5 Syllables That Change Everything
Inoperable.
Amazing how a single word can rock your world.
We met Thursday morning with the multidisciplinary cancer team at the CU Denver Medical Center. After reviewing Michelle’s case and all the detailed information, they came to the conclusion that it would not be possible to remove all of Michelle’s cancer with an operation. Due to the location of the tumor within the common bile duct, and the suspected (and probable) tumor in the left hepatic duct, it would be necessary to remove ½ her pancreas and ½ her liver, along with all the ducts. We are dealing with a particularly aggressive and stubborn cancer, which is likely to recur postoperatively. They said it would be of small benefit to perform such a radical surgery when the outcome is unlikely to improve significantly. For this reason they are very doubtful of the efficacy of transplant in Michelle’s situation.
The only remaining option they presented to us was radiation therapy concurrent with chemotherapy. The radiation treatments would occur daily for 5-6 weeks, with chemo on the same days, immediately after radiation. There are 2 options for chemo: the current standard treatment or a clinical trial. If we chose the more standard treatment, we can receive both therapies close to home in Fort Collins. Participation in the clinical trial requires receiving the treatment in Denver.
The best chance for a cure is surgery followed by radiation and chemo. Without surgery, the chance of cure falls dramatically, but is still possible. Part of the problem is that this is a rare cancer and there have not been enough cases to study.
Obviously, this conversation changed the entire game. Prior to this meeting, I wrote a blog entry (see below) detailing the trials and tribulations we went through leading up to that time. It all seems trivial now, so I’ll summarize in the next paragraph and you can read on if you want all the gory details.
Early Tuesday morning, Michelle was wheezing loudly in her sleep. When I work her up she was very disoriented and incoherent, and could not catch her breath. She couldn’t hear very well and was in obvious distress. I called 911 and they stabilized her on the way to the hospital. the ultimate diagnosis was that a significant increase in her pain medication caused over sedation which interfered with her breathing. She was admitted to the hospital to establish a new pain management protocol. A nerve block procedure similar to a spinal was performed which successfully suppressed the majority of her abdominal pain and reduced her need for narcotics. Since her oxygen saturation was unsatisfactory, she stayed in the hospital Wednesday and skipped the scheduled ERCP to undergo x-ray, CT, and ultrasound procedures to identify any lung issues. Since all came back negative, she was discharged early Thursday morning to attend the consultation in Denver.
The cancer team said the ERCP we missed may not ultimately be necessary. It would most certainly add to the body of knowledge about Michelle’s condition, but would have only a trivial impact on the course of treatment. The chemo drugs and radiation therapy would be the same, but the ERCP might help slightly in targeting the radiation. We did reschedule the ERCP and will find out at our next meeting with the team whether we should proceed or not.
The following entry was written in the waiting area of University Hospital on Thursday, December 18, while the multidisciplinary cancer team consulted and worked out a treatment plan.
What a week this has been already! Michelle spent all day Tuesday and Wednesday at Poudre Valley Hospital in Fort Collins. The doctors determined that Monday’s increase in the dosage of Fentanyl caused Michelle’s wheezing Monday night, and admitted her until an alternative Pain Management plan could be developed. Tuesday evening they performed a procedure called a “Celliac (sp?) Bundle Block”. Using 4 needles near her vertebrae, they injected a potent form of alcohol (stronger than Isopropyl alcohol) which dissolved the protein coating of several nerve bundles, deadening their ability to transmit pain signals. Fortunately the procedure was a success, and Michelle’s abdominal pain has been greatly diminished. Hallelujah!
Michelle was on put on oxygen Tuesday morning as part of the treatment for her breathing problem. Her O2 saturation remained low all day Wednesday, and although we were able to reduce the volume of O2, we were unable to switch her completely to room air. As a result, we cancelled* the ERCP scheduled for Wednesday and she spent the night in the hospital.
To investigate the continuing breathing problem, a chest x-ray, a CT scan of her chest, and Doppler ultrasound analysis of her legs were performed. They found a partial collapse and fluid in both lungs, but no clots in her lungs or legs. Apparently Bile Duct Cancer brings with it a significant increase in the risk and incidence of blood clots, so they were particularly concerned about ruling this out before she was discharged. Since all was well, they wrote discharge orders for 5:00 AM Thursday so we could keep the appointment with the CU Hospital Cancer Team in Denver at 8:00 AM.
Michelle now has a portable oxygen tank. The pulmonary specialist said her current problems are most likely due to an acid reflux incident Monday night (before the wheezing problem which resulted in the call to 911.) It is common for people with hiatal hernia to aspirate stomach acid, causing lung irritation and ultimately scarring. While this has almost certainly happened to Michelle, she has plenty of residual lung capacity and should have no long-term complication from this incident. He expects her to come off the O2 in roughly 48 hours, or sometime on Friday.
As you can imagine, these complications have been crushing to Michelle’s spirits, but she’s hanging in there. All your kind words of support have been a great comfort to her, so please keep them coming. Michelle and I are great believers in the power of prayer and positive thinking, so please don’t stop praying for her.
Physically, Michelle is very tired and experiencing some pain when coughing and/or breathing deeply, both of which are critical to regaining her lung function. We are armed with pain medications that are effectively handling the discomfort but still leave her feeling “druggy”.
[I’m taking care of myself as well. I had a very uplifting visit with our family counselor and spiritual advisor Allen Brandon, which helped me immensely. Our daughter Kelly has been a great help, and has given me the space I need to rejuvenate and stay strong for Michelle.]
Next up: PET scan scheduled for tomorrow in Fort Collins.
* - The ERCP originally planned for 12/17 has been rescheduled for Monday January 5. Dr. Chen expects to have the advanced scope back from Japan by then, which will only improve the data gathering. The main difference between this scope and the previous version is the addition of a Narrow Band Imaging (NBI) tool.
Amazing how a single word can rock your world.
We met Thursday morning with the multidisciplinary cancer team at the CU Denver Medical Center. After reviewing Michelle’s case and all the detailed information, they came to the conclusion that it would not be possible to remove all of Michelle’s cancer with an operation. Due to the location of the tumor within the common bile duct, and the suspected (and probable) tumor in the left hepatic duct, it would be necessary to remove ½ her pancreas and ½ her liver, along with all the ducts. We are dealing with a particularly aggressive and stubborn cancer, which is likely to recur postoperatively. They said it would be of small benefit to perform such a radical surgery when the outcome is unlikely to improve significantly. For this reason they are very doubtful of the efficacy of transplant in Michelle’s situation.
The only remaining option they presented to us was radiation therapy concurrent with chemotherapy. The radiation treatments would occur daily for 5-6 weeks, with chemo on the same days, immediately after radiation. There are 2 options for chemo: the current standard treatment or a clinical trial. If we chose the more standard treatment, we can receive both therapies close to home in Fort Collins. Participation in the clinical trial requires receiving the treatment in Denver.
The best chance for a cure is surgery followed by radiation and chemo. Without surgery, the chance of cure falls dramatically, but is still possible. Part of the problem is that this is a rare cancer and there have not been enough cases to study.
Obviously, this conversation changed the entire game. Prior to this meeting, I wrote a blog entry (see below) detailing the trials and tribulations we went through leading up to that time. It all seems trivial now, so I’ll summarize in the next paragraph and you can read on if you want all the gory details.
Early Tuesday morning, Michelle was wheezing loudly in her sleep. When I work her up she was very disoriented and incoherent, and could not catch her breath. She couldn’t hear very well and was in obvious distress. I called 911 and they stabilized her on the way to the hospital.
The cancer team said the ERCP we missed may not ultimately be necessary. It would most certainly add to the body of knowledge about Michelle’s condition, but would have only a trivial impact on the course of treatment. The chemo drugs and radiation therapy would be the same, but the ERCP might help slightly in targeting the radiation. We did reschedule the ERCP and will find out at our next meeting with the team whether we should proceed or not.
The following entry was written in the waiting area of University Hospital on Thursday, December 18, while the multidisciplinary cancer team consulted and worked out a treatment plan.
What a week this has been already! Michelle spent all day Tuesday and Wednesday at Poudre Valley Hospital in Fort Collins. The doctors determined that Monday’s increase in the dosage of Fentanyl caused Michelle’s wheezing Monday night, and admitted her until an alternative Pain Management plan could be developed. Tuesday evening they performed a procedure called a “Celliac (sp?) Bundle Block”. Using 4 needles near her vertebrae, they injected a potent form of alcohol (stronger than Isopropyl alcohol) which dissolved the protein coating of several nerve bundles, deadening their ability to transmit pain signals. Fortunately the procedure was a success, and Michelle’s abdominal pain has been greatly diminished. Hallelujah!
Michelle was on put on oxygen Tuesday morning as part of the treatment for her breathing problem. Her O2 saturation remained low all day Wednesday, and although we were able to reduce the volume of O2, we were unable to switch her completely to room air. As a result, we cancelled* the ERCP scheduled for Wednesday and she spent the night in the hospital.
To investigate the continuing breathing problem, a chest x-ray, a CT scan of her chest, and Doppler ultrasound analysis of her legs were performed. They found a partial collapse and fluid in both lungs, but no clots in her lungs or legs. Apparently Bile Duct Cancer brings with it a significant increase in the risk and incidence of blood clots, so they were particularly concerned about ruling this out before she was discharged. Since all was well, they wrote discharge orders for 5:00 AM Thursday so we could keep the appointment with the CU Hospital Cancer Team in Denver at 8:00 AM.
Michelle now has a portable oxygen tank. The pulmonary specialist said her current problems are most likely due to an acid reflux incident Monday night (before the wheezing problem which resulted in the call to 911.) It is common for people with hiatal hernia to aspirate stomach acid, causing lung irritation and ultimately scarring. While this has almost certainly happened to Michelle, she has plenty of residual lung capacity and should have no long-term complication from this incident. He expects her to come off the O2 in roughly 48 hours, or sometime on Friday.
As you can imagine, these complications have been crushing to Michelle’s spirits, but she’s hanging in there. All your kind words of support have been a great comfort to her, so please keep them coming. Michelle and I are great believers in the power of prayer and positive thinking, so please don’t stop praying for her.
Physically, Michelle is very tired and experiencing some pain when coughing and/or breathing deeply, both of which are critical to regaining her lung function. We are armed with pain medications that are effectively handling the discomfort but still leave her feeling “druggy”.
[I’m taking care of myself as well. I had a very uplifting visit with our family counselor and spiritual advisor Allen Brandon, which helped me immensely. Our daughter Kelly has been a great help, and has given me the space I need to rejuvenate and stay strong for Michelle.]
Next up: PET scan scheduled for tomorrow in Fort Collins.
* - The ERCP originally planned for 12/17 has been rescheduled for Monday January 5. Dr. Chen expects to have the advanced scope back from Japan by then, which will only improve the data gathering. The main difference between this scope and the previous version is the addition of a Narrow Band Imaging (NBI) tool.
Tuesday, December 16, 2008
Allergies and Next Steps
Michelle was taken by ambulance to the Emergency Room last night with difficulty breathing. She's being admitted to work out a new pain management plan, as we believe she had an allergic reaction to a med we increased yesterday.
Yesterday we met Dr. Marschke, an oncologist here in Fort Collins. He is very concerned about Michelle's increasing level of pain and wants to be more aggressive in exploring treatment options. He increased the dosage of the Fentanyl patches, and we believe this triggered a severe allergic reaction.
Other developments: the ERCP scheduled for Wednesday (in Denver) is still on, but the SpyGlass tool is still in Japan for repair and won't be available until mid-January. We decided to proceed with an earlier generation tool which will still provide diagnostic value although it is not as fully optimized as SpyGlass.
We have an appointment with the CU Denver cancer team on Thursday. We will meet with each team member and then they get together to design a treatment plan and present it to us the same day. We plan to get a hotel room Wednesday after the ERCP to spend the night and avoid the 3 hour round trip.
Michelle is scheduled for a PET scan on Friday. This is a key cancer diagnostic where they create a 3 dimensional full-body image with CT scans to screen for any traces of cancer. With this scan plus Wednesday's procedure, we should have a better picture of the extent of the cancer.
Sunday, December 14, 2008
Appointment tomorrow with Oncologist
Tomorrow morning, December 15, we have our first appointment with Dr. Robert Marschke, an oncologist in Fort Collins who specializes in gastric cancers. We plan to ask him to help coordinate Michelle’s care and help us sort through options, locate candidates for second opinions if necessary, etc. Since we expect to seek treatments in Fort Collins after the doctors at the University Medical Center create a treatment plan, we hope to have Dr. Marschke coordinate those treatments.
Dr. Marschke received his medical training at Baylor College of Medicine and did both his residency and fellowship at Mayo Clinic. He is highly recommended by several of Michelle’s Fort Collins doctors.
Thursday, December 11, 2008
ERCP #3 Scheduled
We have a date for the next ERCP, to be performed by Dr. Chen (Dr. Shah's partner) at the CU Denver Medical Center: Wednesday, December 17 at 12:30 PM. Dr. Chen pioneered a tool, called "SpyGlass", with a tiny camera that can travel deep into the biliary tract and provide high resolution images.
The primary goal of this procedure will be to add to our knowledge of the extent of the cancer.
The primary goal of this procedure will be to add to our knowledge of the extent of the cancer.
Backstory
Let's start at the very beginning.
Since college, Michelle has experienced on and off problems with her digestive system. She was diagnosed with a hiatal hernia, successfully treated for an ulcer, had her gall bladder removed in 1993, and suffered through several bouts of very painful pancreatitis.
In 1999 she had her first ERCP, a procedure using an endoscope through her esophagus, stomach, and small intestine during which they injected dye into her bile duct and capture images with a CT scan. The results of this exam were inconclusive.
A second ERCP in 2002 revealed 4 stones in her bile duct which caused a major blockage resulting in a "fistula", a new pathway around the blocked sphincter. Microsurgery was performed to open the sphincter from the bile duct to small intestine to eliminate future blockages. About 6 months later she was put on amitriptyline to relieve continuing pain in the area, and that treatment was successful until now.
September 15, 2008
Michelle first began to complain about upper abdominal pain, locate much higher than in the past. The early diagnosis was either cardiac or gastric pain, so the doctors recommended investigating cardiac issues as the potentially more life-threatening condition.
November 3, 2008
After several cardiac tests (one of which hinted at a potential issue), the pain continued to increase and Michelle began to feel more and more strongly that it was gastric rather than cardiac. She stayed home from work and her gastroenterologist put her on Vicodin and scheduled an ERCP was for November 10. She hasn't been back to work since October 28.
November 10, 2008
The ERCP reveals 2 blockages: a stricture in her common bile duct and an unknown blockage in the left hepatic duct. A stent is placed to relieve the lower blockage and cellular brushings are taken for analysis, but the local hospital lacks the technology to biopsy the bile duct or investigate and relieve the upper blockage. Her case is referred to the University of Colorado Denver Medical Center where they have more advanced tools and experience.
Michelle stays in the hospital overnight for observation and comes home the next day.
November 14, 2008
Michelle is readmitted to the hospital with high fever and increased pain. An infection had developed as a result of the ERCP which threatened her heart. IV antibiotics got the situation under control and she returned home on Monday, November 17.
November 18-December 3, 2008
Michelle self-administered IV antibiotic treatments at home. Pain increased, and pain medication was increased accordingly.
December 4, 2008
Two procedures, Endoscopic Ultrasound and ERCP with biopsy, are performed by Dr. Shah at CU Medical Center. Two biopsies are taken from the common bile duct in and near the lower stricture, and a longer stent is placed to open up both blockages and hopefully relieve Michelle's pain. The upper blockage, in the left hepatic duct, is found to be a second stricture. Cellular brushings are taken from that site for analysis.
December 8, 2008
The results are in: both biopsies are positive for bile duct cancer. Another ERCP will be scheduled to take place within 2 weeks to fully explore the upper stricture and obtain better tissue samples. It is critical to identify the extent of the cancer (does it extend to the bile ducts inside the liver?) before a treatment plan can be formlulated. The CU Medical Center cancer team, which specializes in this exact cancer, will be brought in on Michelle's case.
Since college, Michelle has experienced on and off problems with her digestive system. She was diagnosed with a hiatal hernia, successfully treated for an ulcer, had her gall bladder removed in 1993, and suffered through several bouts of very painful pancreatitis.
In 1999 she had her first ERCP, a procedure using an endoscope through her esophagus, stomach, and small intestine during which they injected dye into her bile duct and capture images with a CT scan. The results of this exam were inconclusive.
A second ERCP in 2002 revealed 4 stones in her bile duct which caused a major blockage resulting in a "fistula", a new pathway around the blocked sphincter. Microsurgery was performed to open the sphincter from the bile duct to small intestine to eliminate future blockages. About 6 months later she was put on amitriptyline to relieve continuing pain in the area, and that treatment was successful until now.
September 15, 2008
Michelle first began to complain about upper abdominal pain, locate much higher than in the past. The early diagnosis was either cardiac or gastric pain, so the doctors recommended investigating cardiac issues as the potentially more life-threatening condition.
November 3, 2008
After several cardiac tests (one of which hinted at a potential issue), the pain continued to increase and Michelle began to feel more and more strongly that it was gastric rather than cardiac. She stayed home from work and her gastroenterologist put her on Vicodin and scheduled an ERCP was for November 10. She hasn't been back to work since October 28.
November 10, 2008
The ERCP reveals 2 blockages: a stricture in her common bile duct and an unknown blockage in the left hepatic duct. A stent is placed to relieve the lower blockage and cellular brushings are taken for analysis, but the local hospital lacks the technology to biopsy the bile duct or investigate and relieve the upper blockage. Her case is referred to the University of Colorado Denver Medical Center where they have more advanced tools and experience.
Michelle stays in the hospital overnight for observation and comes home the next day.
November 14, 2008
Michelle is readmitted to the hospital with high fever and increased pain. An infection had developed as a result of the ERCP which threatened her heart. IV antibiotics got the situation under control and she returned home on Monday, November 17.
November 18-December 3, 2008
Michelle self-administered IV antibiotic treatments at home. Pain increased, and pain medication was increased accordingly.
December 4, 2008
Two procedures, Endoscopic Ultrasound and ERCP with biopsy, are performed by Dr. Shah at CU Medical Center. Two biopsies are taken from the common bile duct in and near the lower stricture, and a longer stent is placed to open up both blockages and hopefully relieve Michelle's pain. The upper blockage, in the left hepatic duct, is found to be a second stricture. Cellular brushings are taken from that site for analysis.
December 8, 2008
The results are in: both biopsies are positive for bile duct cancer. Another ERCP will be scheduled to take place within 2 weeks to fully explore the upper stricture and obtain better tissue samples. It is critical to identify the extent of the cancer (does it extend to the bile ducts inside the liver?) before a treatment plan can be formlulated. The CU Medical Center cancer team, which specializes in this exact cancer, will be brought in on Michelle's case.
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