Who knew it would be so tough to get some dang labs?
To recap, a mass blocked E.'s bile duct, so his liver backed up with bile. On Thursday, they placed a stent in the duct so hopefully all that bile could drain. He needs some normal lab numbers so we can travel to MD Anderson in Texas to hopefully figure out some options to deal with this latest cancer recurrence. (He can't get any treatment with his liver numbers so out of whack. With the bile so high in his body, it's very toxic. Add poisonous chemo to the mix and it could be deadly.)
In my search for information online, it looks like it can take anywhere from days to weeks for the bile to drain. An added complication though is sometimes after a few weeks, the tumor begins to grow over the stent, causing another obstruction and so you're back to where you started. I also read about situations where the stent was unsuccessful for a variety of reasons. It seems reasonable to me that we need some labs to see where we are at. 1. If the stent is working and his numbers are down, we can make arrangements to get our butts to Texas. 2. If the stent isn't working and his numbers aren't decreasing, we need to come up with Plan B.
So, on Friday, I left message #1 with the GI nurse explaining how we were trying to get to the Cancer Hospital in Texas because we had no options here. In order to do that, we needed some normal labs. Because I figured the office would be closed on Monday, I was hoping we could get a lab slip before the weekend to hopefully collect labs on Monday.
On Monday, I discovered the GI office was indeed open. I left message #2. I again explained the situation. At 3:30 p.m., the nurse returned my call. Once again, I expressed how important these labs were to our situation. She indicated that she would discuss it with the doctor and call me back shortly.
What's the definition of "shortly" anyways?
This morning (it's Tuesday now, in case you lost track) I headed to our Primary Care Physician. I was in and out in five minutes. I left with a lab slip in hand. Thank you Dr. H.!
4:15 p.m. rolled around and the GI nurse called back. (That'd be 4:15 on Tuesday, not 4:15 on Monday.) Anyways, she informed me that when we left the office last week, we were given a lab slip that had a date for his next labs. NOT. I quickly thumbed through my folder of paperwork and I definitely did NOT have a lab slip. Anyways, they'd like E. to go in for labs on 11/29/12! That's 16 days from now!!! And a full 21 days from his stent placement!!! Clearly we are not on the same page here. Did the nurse not hear anything I said in my messages or my discussion with her? Our follow-up appointment with the GI that was scheduled for this Thursday was re-scheduled for December 4th! And the purpose of the appointment according to the nurse? To discuss further stent placement. Oh dear. Get us to Texas.
Crossing my fingers for some good lab results tomorrow.
Tuesday, November 13, 2012
Friday, November 9, 2012
Drop Bilirubin Drop
We just heard from the physician's assistant at MD Anderson. E.'s labwork (specifically all those liver numbers) have to get back into the normal range for us to make appointments. Drain bile drain. Drop bilirubin drop. And we're headed into a three-day-weekend. Shucks.
Thursday, November 8, 2012
Procedure
We checked in for E.'s procedure at 8:30 a.m. and they took him to the operating room at 10:15 a.m. They told me to be back in the waiting room within thirty minutes because they anticipated the surgery to take between 30 and 60 minutes. Imagine my anxiety when the doctor did not emerge until after 12:30 p.m.! Obviously the surgery took A LOT longer than they thought.
The good news of the day is that they were able to place the stent. It was extremely difficult. They actually had to place two stents. One stent went up into the pancreas and then they worked backwards to get one stent into the bile duct. The one into the bile duct has anchor, whereas the one into the pancreas does not, so the thought is that it will eventually just slide out (because it doesn't really need to be there). The stents are plastic, so they are temporary and only good for three months. After that, they will need to be replaced with another temporary plastic stent or a more permanent metal stent. (Metal stents are considered for more palliative care and not generally used when treatment options are still being considered, is my understanding.) The bile is draining, which is great. The bilirubin level should be going down in the next few days. His yellow skin and yellow eyes, on the other hand, will take weeks to improve though.
Here's where I get a bit confused. Remember that mass in the small intestine at the base of the stomach? In the original endoscopy last week, the verbal preliminary pathology report said it was NOT cancerous. (We still haven't heard about a final pathology report.) Now, remember the MRI said there was a group of enlarged lymph nodes that basically clustered together to form a mass or a tumor? I think maybe these two things are the same. I'm confused on this issue. The doctor who performed the procedure today said he was able to get samples from the "celiac axis lymphadenopathy" which were definitely cancerous. Basically, I'm not sure if we're talking about two separate masses or just one mass (and the original report was just wrong). This cancerous mass is extending into the pancreas, but no one has made it clear to us if the pancreas is involved. Until the final pathology report in back, we cannot confirm what kind of cancer this is. Everyone is assuming that this is spread from his esophageal cancer. We need to know specifically what kind of cancer it is, because every kind of cancer is treated differently.
The doctor was unable to reach the liver to biopsy the spots (cancer) on the liver. Again, it is assumed that this is spread from his esophageal cancer. As he explained to us, if the pathology report comes back from the lymph nodes as esophageal cancer, they may go ahead and accept that the liver is also esophageal cancer mets. If they want further confirmation, they will need to stick a long needle in E's side by his ribs to reach his liver and pull out tissue to biopsy. There could be a possibility that this is a different cancer, for example, liver cancer. Everyone's assumption though is that this is all metastasis from the esophageal cancer.
E. has not yet had a PET/CT scan, but obviously needs one. We are waiting to hear the plans with MD Anderson. The insurance company will not pay for two PET/CT scans back-to-back. We know that MD Anderson will want to run their own scans, so we are holding off getting a scan here. We are trying to play the insurance game right.
E. is still in significant amounts of pain and sleeping on and off most of the day. He has finally relented and taken a pain pill now and then. (He is not on high dose pain medication at this point. He is simply taking Percocet. The same stuff I took when I had a toothache.) Eating is still problematic, unfortunately. I wish there was more I could do for him.
S.
P.S. A big thanks to MAPper for the delicious dinner and the fixings for tomorrow as well. It was hugely appreciated after the long day at the hospital. Big hugs.
The good news of the day is that they were able to place the stent. It was extremely difficult. They actually had to place two stents. One stent went up into the pancreas and then they worked backwards to get one stent into the bile duct. The one into the bile duct has anchor, whereas the one into the pancreas does not, so the thought is that it will eventually just slide out (because it doesn't really need to be there). The stents are plastic, so they are temporary and only good for three months. After that, they will need to be replaced with another temporary plastic stent or a more permanent metal stent. (Metal stents are considered for more palliative care and not generally used when treatment options are still being considered, is my understanding.) The bile is draining, which is great. The bilirubin level should be going down in the next few days. His yellow skin and yellow eyes, on the other hand, will take weeks to improve though.
Here's where I get a bit confused. Remember that mass in the small intestine at the base of the stomach? In the original endoscopy last week, the verbal preliminary pathology report said it was NOT cancerous. (We still haven't heard about a final pathology report.) Now, remember the MRI said there was a group of enlarged lymph nodes that basically clustered together to form a mass or a tumor? I think maybe these two things are the same. I'm confused on this issue. The doctor who performed the procedure today said he was able to get samples from the "celiac axis lymphadenopathy" which were definitely cancerous. Basically, I'm not sure if we're talking about two separate masses or just one mass (and the original report was just wrong). This cancerous mass is extending into the pancreas, but no one has made it clear to us if the pancreas is involved. Until the final pathology report in back, we cannot confirm what kind of cancer this is. Everyone is assuming that this is spread from his esophageal cancer. We need to know specifically what kind of cancer it is, because every kind of cancer is treated differently.
The doctor was unable to reach the liver to biopsy the spots (cancer) on the liver. Again, it is assumed that this is spread from his esophageal cancer. As he explained to us, if the pathology report comes back from the lymph nodes as esophageal cancer, they may go ahead and accept that the liver is also esophageal cancer mets. If they want further confirmation, they will need to stick a long needle in E's side by his ribs to reach his liver and pull out tissue to biopsy. There could be a possibility that this is a different cancer, for example, liver cancer. Everyone's assumption though is that this is all metastasis from the esophageal cancer.
E. has not yet had a PET/CT scan, but obviously needs one. We are waiting to hear the plans with MD Anderson. The insurance company will not pay for two PET/CT scans back-to-back. We know that MD Anderson will want to run their own scans, so we are holding off getting a scan here. We are trying to play the insurance game right.
E. is still in significant amounts of pain and sleeping on and off most of the day. He has finally relented and taken a pain pill now and then. (He is not on high dose pain medication at this point. He is simply taking Percocet. The same stuff I took when I had a toothache.) Eating is still problematic, unfortunately. I wish there was more I could do for him.
S.
P.S. A big thanks to MAPper for the delicious dinner and the fixings for tomorrow as well. It was hugely appreciated after the long day at the hospital. Big hugs.
Wednesday, November 7, 2012
Procedure Prep
Thanks to some rescheduling at the GI office, E.'s going in for his procedure tomorrow. That means all the prep work needs to be completed today, so off we went to St. Mary's. Two and a half hours later, the EKG, the chest x-ray, the labs and all the paperwork were done.
The physician's assistant from MD Anderson phoned and discussed the recent turn of events. NOTHING can be done treatment wise until the bile is able to drain from the liver. Right now, the bile's creating a toxic situation in the body. Adding chemotherapy or anything else to the mix would be deadly. She asked me to e-mail her after the procedure to let her know if the stent was successfully placed. I asked if MD Anderson would have a Plan B if the procedure was unsuccessful. She was not sure, but would discuss it with Dr. A (the oncologist) who was currently out of town, but who would be returning in a couple of days. She needed to consult with Dr. A before scheduling any appointments. We are crossing our fingers that the stent will be successfully placed in the bile duct tomorrow and we will be able to get to MD Anderson and see what our options are as soon as possible.
The physician's assistant from MD Anderson phoned and discussed the recent turn of events. NOTHING can be done treatment wise until the bile is able to drain from the liver. Right now, the bile's creating a toxic situation in the body. Adding chemotherapy or anything else to the mix would be deadly. She asked me to e-mail her after the procedure to let her know if the stent was successfully placed. I asked if MD Anderson would have a Plan B if the procedure was unsuccessful. She was not sure, but would discuss it with Dr. A (the oncologist) who was currently out of town, but who would be returning in a couple of days. She needed to consult with Dr. A before scheduling any appointments. We are crossing our fingers that the stent will be successfully placed in the bile duct tomorrow and we will be able to get to MD Anderson and see what our options are as soon as possible.
Monday, November 5, 2012
Oncologist Appt
We met with the oncologist this morning.
The first thing we learned was that the biopsy results weren't back yet. What? We were told they'd be back on Friday and here it was Monday. Dr. B gave a call over to the lab and the pathologist gave a preliminary verbal report that she couldn't see any cancerous cells in the samples. What??? Seriously? Maybe this was all a bad dream after all.
The words hadn't even sunk in when Dr. B turned the page and his eyes got big. "Hold up," he said. He was scanning the MRI/MRCP report and it told a different story.
There are "multiple low-density lesions (approximately 5)" in the liver suspicious for metastasis. The largest mass is in the right lobe near the diaphragm and measures 3 cm. There is small free fluid adjacent to the liver.
"Bulky celiac axis lymphadenopathy is present." (My understanding is that this is like enlarged lymph nodes, suspicious for metastasis, clustered together.) This area measures approximately 5 cm. The mass extends into the pancreas and obstructs the common bile duct.
"The upper superior mesenteric vein and the portal vein are thrombosed. This is likely due to compression of invasion by tumor." As I understand it, these veins are clotted because the mass is pushing on them. Nice.
Right now the immediate issue is the bile duct. We need to get a stent in there so the liver can start working. E. is scheduled for an Endoscopic Ultrasound on Thursday to hopefully get a stent placed to open up that bile duct. There is concern that they won't be able to get past that mass in the small intestine. Yikes. If they are successful, they will also collect biopsies at the same time. We need to know what exactly we are dealing with. The assumption again is that this is mets from the esophageal cancer, but it might be another beast altogether.
Little can be offered for E. here in Reno. The oncologist already explained that the only thing that Reno could offer him would be chemotherapy. He agreed that MD Anderson might have more options and agreed it would be worthwhile to see what they had to say. We were scheduled to head to Texas in December for a simple follow-up, but needless to say, things have changed and we are hoping to be Texas bound as soon as possible.
It was suggested that E. be admitted to the hospital for hydration and pain management. I do believe I saw the middle finger. E. did manage to eat a protein bar today and drink some water. He also finally took his first pain pill, after writhing in pain for hours (days, really). Though he's been sleeping a lot, it looks like he's finally sleeping peacefully.
The first thing we learned was that the biopsy results weren't back yet. What? We were told they'd be back on Friday and here it was Monday. Dr. B gave a call over to the lab and the pathologist gave a preliminary verbal report that she couldn't see any cancerous cells in the samples. What??? Seriously? Maybe this was all a bad dream after all.
The words hadn't even sunk in when Dr. B turned the page and his eyes got big. "Hold up," he said. He was scanning the MRI/MRCP report and it told a different story.
There are "multiple low-density lesions (approximately 5)" in the liver suspicious for metastasis. The largest mass is in the right lobe near the diaphragm and measures 3 cm. There is small free fluid adjacent to the liver.
"Bulky celiac axis lymphadenopathy is present." (My understanding is that this is like enlarged lymph nodes, suspicious for metastasis, clustered together.) This area measures approximately 5 cm. The mass extends into the pancreas and obstructs the common bile duct.
"The upper superior mesenteric vein and the portal vein are thrombosed. This is likely due to compression of invasion by tumor." As I understand it, these veins are clotted because the mass is pushing on them. Nice.
Right now the immediate issue is the bile duct. We need to get a stent in there so the liver can start working. E. is scheduled for an Endoscopic Ultrasound on Thursday to hopefully get a stent placed to open up that bile duct. There is concern that they won't be able to get past that mass in the small intestine. Yikes. If they are successful, they will also collect biopsies at the same time. We need to know what exactly we are dealing with. The assumption again is that this is mets from the esophageal cancer, but it might be another beast altogether.
Little can be offered for E. here in Reno. The oncologist already explained that the only thing that Reno could offer him would be chemotherapy. He agreed that MD Anderson might have more options and agreed it would be worthwhile to see what they had to say. We were scheduled to head to Texas in December for a simple follow-up, but needless to say, things have changed and we are hoping to be Texas bound as soon as possible.
It was suggested that E. be admitted to the hospital for hydration and pain management. I do believe I saw the middle finger. E. did manage to eat a protein bar today and drink some water. He also finally took his first pain pill, after writhing in pain for hours (days, really). Though he's been sleeping a lot, it looks like he's finally sleeping peacefully.
Friday, November 2, 2012
MRI and MRCP
E. underwent and MRI and MRCP of his abdomen today. The hardest part was that he wasn't allowed to have anything to eat or drink for six hours prior to the tests and the tests weren't scheduled until 2:30 p.m.! Not that E. is eating much these days, but he sure was thirsty by the time he was finished.
Again, the test results would be available this afternoon, but since Dr. N wasn't around, we'd have to wait through the weekend. I went ahead and scheduled an appointment with the oncologist, Dr. B for Monday morning to get the ball rolling. Hopefully we'll have some information by then and get a plan in place.
Again, the test results would be available this afternoon, but since Dr. N wasn't around, we'd have to wait through the weekend. I went ahead and scheduled an appointment with the oncologist, Dr. B for Monday morning to get the ball rolling. Hopefully we'll have some information by then and get a plan in place.
Thursday, November 1, 2012
Endoscopy
E. underwent his endoscopy without any complications. He even came out of anesthesia with ease, which he doesn't always do. Dr. N was quick to meet me at E.'s bedside with a diagram, which I knew wasn't good news. He drew me a picture of E.'s stomach and the mass he found in the small intestine, specifically in the "duodenal bulb." He said based on E.'s history, he'd guess it was mets from the esophageal cancer, but he took biopsies which would be sent out to the lab. According to the preliminary report, the findings were as follows:
1. Duodenal bulb lesion with partial obstruction. Lesion seemed firm and friable. Biopsies were obtained. There is concern for invasion of the duodenal wall by metastatic adenocarcinoma.
2. Duodenitis.
3. Gastritis.
4. Esophageal varices.
The biopsies should be back tomorrow, but Dr. N would be out of the office, so we won't know anything until Monday. Grrr.
1. Duodenal bulb lesion with partial obstruction. Lesion seemed firm and friable. Biopsies were obtained. There is concern for invasion of the duodenal wall by metastatic adenocarcinoma.
2. Duodenitis.
3. Gastritis.
4. Esophageal varices.
The biopsies should be back tomorrow, but Dr. N would be out of the office, so we won't know anything until Monday. Grrr.
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