July 29: I’ve been holding off on posting anything about my Mom’s health for the last month because, while she has been having health complications, it hasn’t been clear what was going on, and she didn’t want to get people worried while we were waiting to find out answers from her wide team of health experts. At this point, though, it is looking very likely that Mom’s cancer has returned.
Here’s the back story.
I haven’t posted about Mom’s health in many months because there hasn’t been much to say. Here’s a link to past posts I’ve done on Mom’s health. She was diagnosed with pancreatic cancer in May 2005. She then did chemo and chemoradiation throughout the summer with the hope of shrinking the tumor so it could be removed. We met with several surgeons in the fall of 2005 who said they could not operate, but when Mom met with Dr. Farnell at Mayo clinic in December, he said he could operate.
Mom had the major Whipple Procedure done on January 11, 2006 to remove the tumor, most of her pancreas, and sections of intestine and stomach. The surgery was very successful with the one blemish being that there was a positive margin on the Superior Mesenteric Vein. That means that some tumor cells were left in Mom’s body, and given the fierceness with which they regrow, it made her more susceptible for recurrence. We were told that follow-up chemotherapy would help prevent it from coming back.
Mom recovered well from the surgery. She underwent several weeks of follow-up chemo, and over the summer and fall of 2006, she took part in a clinical trial for an immunization to help a person’s immune system fight off pancreatic cancer recurrence.
By fall 2006, Mom was feeling mostly back to normal…more easily fatigued, but generally good. In April 2007, she started back up at work 30 hours/week at American Girl. Every few months she has had a CT scan has happily showed no sign of recurrence.
Summer 2007
In late June, Mom’s abdomen started filling up with fluid. By the end of June, she felt like she was eight months pregnant. She had a CT scan on June 28.
On June 29, we met with Dr. Frontiera, her oncologist. He said that she had a clot in the Portal Vein which drains the liver and spleen. The Portal Vein is is formed by the superior mesenteric vein and splenic vein. Looking at the CT scan, he said that he saw a thickening or fullness in the vein, and said that the cause of the clot may or may not be tumor. Having a clot in the Portal Vein puts stress on the liver and causes fluid, called ascites, to weep from the liver. This fluid is what was causing Mom’s abdomen to swell. Dr. Frontiera said that the main way of dealing with a clot in the Portal Vein is to put Mom on a blood thinner like Cumaden. Unfortunately, Mom has had two episodes of internal bleeding from taking very weak blood thinners, so putting her on a heavy-duty blood thinner carries with it some really serious risks. Dr. Frontiera drained Mom of almost eight liters of fluid (a big relief for her), and tested the fluid to see if it contained cancer cells.
On July 3, we met with Dr. Frontiera again. The results of the fluid (as well as repeat tests) showed suspicious cells, but did not confirm the presence of cancer. Frontiera said that we should regard this as a recurrence. He said that if she wanted to treat it, she could go on Gemzar weekly, but the problem is that response rates to Gemzar, the main pancreatic cancer chemo drug, are just depressingly low.
He said that in a best-case scenario, that the clot in the portal vein is being caused by scaring. He said that Mom come in to the clinic every few days to be drained, or she could have an external catheter so she could drain the fluid herself.
On July 11, we met with Dr. Matzke, Dean Care’s pancreatic surgeon. He said (all doctors do) that he was really impressed with how good Mom looks. I think in reading over her chart that they are expecting someone quite a bit sicker. Dr. Matzke said that he thought that the clot was the cancer coming back. He said that not finding confirmation of cancer in the drained fluid in not uncommon. My main thought at this time is, “Man, this guy is just really trying to burst my bubble of denial that this could be recurrence, isn’t he!” Matzke thought that Mom should be on some type of blood thinner to try to free up the portal vein so her liver could drain properly, and was worried about how her liver will do longer-term as it is not able to drain except though some little veins that have developed to compensate for the clot.
We asked lots of questions about surgical options, and again, this nice, young doctor kept bursting our bubble. He told us that no one would try to remove a tumor in this vein or to try to reconstruct the vein. Matzke had worked for our magic Dr. Farnell at Mayo, and we asked him to give us a referral to see him. Matzke helped make that referral possible.
Mid-July: After going in to the clinic to get drained every few days, Mom decided to have a permanent catheter installed so she could drain the astices herself. She has been draining one-to-two liters each day.
This was kind of a rough time. Mom was still working 30 hours per week, wasn’t feeling very good, and was trying really hard to visit and help her mom in Janesville, deal with the fluid issue, and make doctors appointments. Her sick and vacation time at American Girl were down to just a few days, and poor Mom was more discouraged by this whole situation than I have often seen her. To complicate the situation further, about a week after getting the catheter installed, it started leaking. Actually, I think a better description is probably gushing. Mom would be on her way to work, she’d stand up to get out of the car, and she would find herself soaked. Dr. Frontiera tried several times to tighten up the stitches around the drain. He suggested she try bed rest and drain frequently to help keep the pressure down and help it heal. To our great displeasure, though, several weeks later, it is still leaking, flowing, whatever, and it’s keeping mom housebound.
July 25 – Trip to Mayo: Mom, Dad, Maretta, Kyle, Maretta’s friend Josh, and myself all met in Rochester, Minnesota to meet with the oncologist, Dr. Quevedo and with the surgeon Dr. Farnell. Given the difficulty of making a diagnosis from the CT scans, and given how few people are in Mom’s situation, we wanted to talk with some of the world’s experts before we made any decisions about how to proceed.
Mom’s weight has dropped quite a bit the last couple weeks, and she was feeling pretty light headed, but again, the doctors were all impressed with how good she looks.
Dr. Quevedo was very compassionate and gave us a lot of his time. Unfortunately, his diagnosis was not what we wanted to hear. He said that it looks very much like the cancer is back. He did say that occasionally there is no cancer and that blood thinners can deal with a clot in the portal vein, but that it would be unprofessional of him to say that the cancer wasn’t back. Quevedo said that he didn’t know the right answer about using blood thinners. He said, “Do you cause harm by doing or not doing? We can’t know.” Quevedo talked about the pros and cons of going on a weekly infusion of Gemzar, and talked about the possibility of trying a Phase I clinical trial. Dr. Quevedo said that it’s Mom’s decision about which of these treatments she wants to try. When we pressed him about what he would do, he said that if it was his wife, he would suggest she do no treatments because he felt like the possible benefits of the treatments were outweighed by the side effects and the constant medical appointments. Again, nice doctors giving us information we didn’t want to be hearing.
Dr. Quevedo was impressed with how calmly Mom was receiving all this information, the questions she was asking, and the fact that we were joking and occasionally laughing throughout these dire conversations. That’s my mom!
Dr. Farnell didn’t have good information for us either. He felt pretty certain that the portal vein is blocked by tumor. Above that, he had carefully reviewed Mom’s CT scans and actually identified a few other places where he thinks he might be seeing tumor recurrence. One is called a Sister Joseph nodule, and it’s located outside of the abdominal cavity a little above her belly button. The other two spots he showed us are thickenings (a grey fuzzy area on the CT) around the Superior Mesenteric Vein (the good old SMV) and the Common Iliac Artery. Farnell thought that the clot in the Portal Vein should be treated with blood thinners, because he was worried that the clot could propagate and cause complications.
Unfortunately, he took the rug out from under us by saying that surgery is just not an option. He suggested that we get a biopsy of the Sister Joseph nodule. He also took a look at Mom’s catheter can said that drains often will leak when there is a buildup of fluid in the abdomen. He mentioned a “Denver Shunt” as the only other option for dealing with the fluid (astices) buildup, but didn’t recommend it because of concerns of complications.
So from our trip to Mayo, we learned the following:
- This problem really most likely is cancer recurrence. Hearing it from the doctors at Mayo made this seem a lot more real. I feel like I need to still say though, that despite what the doctors think, the clot could just be scarring.
- Surgery isn’t an option. Not even at Mayo.
- We should get the Sister Joseph nodule biopsied. While we don’t want to have proof that we’re dealing with cancer again, we do want to know what we’re dealing with.
- Using a blood thinner like Cumadin or Heparin has a lot of pros and cons. We may want to see a vascular specialist to help us make this decision.
- Going on Gemzar (aka Gemcitabine) for cancer recurrence has pros and cons. The pros aren’t great. The cons aren’t too bad either.
- Trying out a clinical trial is an option (there are about 27 listed right now). The purpose of a phase I is to determine dosage, so there’s a good likelihood of getting sick. Also, there aren’t any trials available now that look like cures. But this is an option if we want to do something.
Hey, that’s a pretty depressing list. No wonder I’ve been feeling kind of down the last few days. Mom is home now, continuing to deal with the leaking issue, and we’re all starting to try to figure out what all this means and where we go from here. If in reading through this, you have questions, please let me know.
We’ve gotten through the last couple years through a combination of a positive attitude, a blissful state of denial when things were going well, and generally just being very appreciative of each other. I hope that before too long, we can feel like we’re all moving forward with this new situation together. For now, I’ll borrow a line of Anne of Green Gables, “Isn’t it nice to think that tomorrow is a new day, with no mistakes in it yet.”
