Category: Mom’s health chronicles

Mom’s been feeling really good this past week.  She had a cat scan and an appointment with Dr. Diggs (her oncologist) today.  The cat scan reviewed her entire torso and didn’t find any additional tumors.  “Poco” the pancreatic tumor hasn’t changed in size.
Dr. Diggs decreased her chemo drug dosage which we hope will in turn decrease the side effects she experiences.  The next round of chemo starts on Monday (the 25th) and goes through the week.  If things progress as they did last time, she’ll feel OK all week and will have a rougher week starting on the 31st.  I’ll update this website to let you know how things go.

July 13:  Mom has made it through the effects of her first chemo treatment, and she’s feeling much more like herself again.  She came home from the hospital on Sunday, and she’s been looking, acting, and feeling much better.  Hooray!  We got together with Mom and the rest of the family on Sunday when Mom and Dad Dotzour and Ben and Melanie were in town.  For photos, visit the most recent photo album
Tomorrow, Mom, Joey, and I are going to go look at Joey’s senior pictures.  Mom doesn’t start his next round of chemo until a week from next Monday (July 25).

My mom started her chemotherapy treatment on Monday, June 27.
Each day that week, she went in for a two hour infusion of gemcitabine.  She felt pretty normal most of the week, but as the doctors warned, days 7-10 after starting the treatment were rough.  She experienced some degree of fatigue, but the nausea was also pretty bad.  To the frustration of all of us who love her, she was also dealing with some really painful mouth sores called mucositis.
Dad took her in to get infusions of saline solution which were supposed to help her body flush the chemo drugs and help with the nausea.
On Wednesday (July 6), the doctors decided to admit her so she could receive continuous saline infusions and get treated with IV antibiotics for a fever she developed.  At this point, she’s feeling markedly better, but we expect her to stay in the hospital until Sunday.

June 27: It’s been a month now since Mom Babler was diagnosed with cancer, and this morning, she started her chemotherapy treatment.  She’ll be receiving chemo infusions each day this week.  For background info, see “Mom’s Health Update” under the news section.

On Friday, June 17, we met with Mom’s oncologist, Dr. Diggs, to talk about treatment options for dealing with her cancer.  We came to the meeting having done a lot of research and full of questions about which treatment would be most appropriate for the stage and type of cancer Mom is facing.  Dr. Diggs spent quite a while talking with us, and by the end of the meeting, we decided to go with the clinical trial: Gemcitabine and Radiotherapy Versus Gemcitabine, Fluorouracil, and Cisplatin Followed By Radiotherapy and Fluorouracil in Patients With Locally Advanced, Potentially Resectable Adenocarcinoma of the Pancreas
Early the week of June 20, Mom will be placed in one of the two treatment arms.  She’ll get a chemo port placed in her upper chest, and may be starting her treatment by Friday.

The data manager for the clinical trial is Lisa Peronto.  She met with us after Dr. Diggs, and we liked her a lot.  I think she’ll help us navigate all the doctors and appointments and details of Mom’s treatment, and it’s good to know we’ll have someone looking out for her and helping us by serving as a clearinghouse for our treatment questions.

She’s planning to set up an appointment mid-week to have a catheter placed in Mom’s upper chest for chemo treatments and blood drawings.  It should be a day surgery.  For more info on this type of catheter, see this website.
Dr. Gibson (her surgeon) would normally be the one to do this procedure, but as he is out for the next couple weeks, Lisa was going to identify a different surgeon on his team to place the catheter.  While I know she’s not looking forward to the procedure, the catheter will keep the doctors from having to poke her for blood draws or chemo drugs during her treatment.

Sometime this week, they will also assign Mom to one of the two arms of the study.  There isn’t a clear “better” arm to be assigned to.
Here’s how the study looks:
Arm A (standard therapy arm)

• Gemcitabine and radiation therapy once a week for six weeks
• Four to six weeks of no therapy
• CT scans to see if the tumor is resectable and if so, surgery (if it’s not operable, potentially go back to the Gemcitabine and radiation therapy again.)
• After surgery, four to six weeks of recovery
• Gemcitabine once a week for two weeks followed by one week of rest.  Repeat five times.

Arm B (the experimental arm)

• Gemcitabine days 1, 5, 29, 33
  Cisplatin days 1-5 and 29-33
  5-FU days 1-4 and 29-32
  Erythropoietin day 1 of weeks 1-9

• Three weeks of no chemotherapy
• Radiation therapy and 5-FU for six weeks
• Four to six weeks of no therapy
• CT scans to see if the tumor is resectable and if so, surgery (if it’s not operable, potentially go back to the chemotherapy followed by radiation).
• After surgery, four to six weeks recovery
• Gemcitabine once a week for two weeks followed by one week of rest.  Repeat three times.

Once we know which arm of the study Mom is assigned to, I’ll write up a calendar with her expected treatment schedule.  The radiation therapy takes about 30 minutes per day.  Chemo in Arm A takes about one hour per day and in Arm B takes about four hours per day.

Breastcancer.org
has some nice info on their website about what to expect from chemotherapy.  Lisa did give us a gentle warning that this treatment regime isn’t an easy one and that Mom is likely to experience nausea, hair loss, loss of appetite, and fatigue.  The chemotherapy also may cause low white blood cell count and low platelet counts (making her more susceptible to infection and bruising).

At this point, Mom’s Cancer Antigen (CA) 19-9
count is 450.  The average is 37, and the standard for resectable tumors in under 1000.  We’ll be tracking this number through her treatment and will be hoping that chemo and radiation help to drop it down.  It can serve as an indicator of how well the treatment is working.

During the meetings with Dr. Diggs, we talked about two alternative drugs, Avastin (bevacizamab) and Erbatix.  Both of these are currently being used to fight other kinds of cancers and may have applications for pancreatic cancer, but it isn’t clear that either drug benefits pancreatic cancer.  They work by cutting off the blood flow to the tumor.  For more info on Avastin, click here.  For a general article on these studies, click here.
I also have the results from a variety of clinical trials that used
these drugs and can give you links if you’re interested.

OK, enough info for today!  Take care,
Althea

On Friday, June 9, Mom had an internal metal wire stent placed in her bile duct.  The tumor at the head of the pancreas had blocked the bile duct, and the stent should keep the duct open so her liver and pancreas can drain like normal into the small intestine.  Mom’s body didn’t react very well to this procedure, and they kept her in the hospital until Tuesday.  On the 14th, doctors tested the bile duct and ended up inserting two additional stents.  Mom went home later that day.  She’s not feeling well, however, and we’re hoping that in a couple days her body will adjust to the poking and jostling it’s been getting and she’ll feel better.

After Friday’s stent placement, Mom ran a high fever for a couple of days, had a moderate amount of pain, and felt nausea and gastrointestinal discomfort (which makes sense since the stent is pretty much in her intestine).  They had expected to release her on Friday night, but it wasn’t until Monday that she was feeling better.

They had a test scheduled for Tuesday, June 14, so on Monday, they decided to keep her in the hospital for another day.  On Tuesday, a radiologist tested the stent by injecting contrast dye into the bile duct and using an x-ray to see how well the dye was able to travel throughout the system.  Apparently
they felt like the single stent wasn’t working well enough because they added two more.  Although she was in quite a bit of pain after this procedure, Mom felt well enough to go home on Tuesday night.
As of Wednesday morning, however, she’s still experiencing pain and continues to struggle with gastrointestinal discomfort and nausea.  Hopefully her body will adjust in the next day or so.

We have an appointment with her oncologist, Dr. Diggs, on Friday, June 17.  At this point, we’ll be discussing treatment options.  We’ve been doing a lot of reading and research, but if anyone has suggestions or input, please contact me by the 17th so we can take your input into consideration as we look at treatment options.

That’s the update for now.  Take care,
Althea

On Thursday, June 9, Mom had a endoscopic surgery called laparoscopy.  The purpose was to look to see if the tumor at the head of the pancreas has spread to other portions of the abdomen.  And we got good news!  Dr. Gibson found no new tumors, and that means that Mom can start a combination of radiation and chemo soon.

Dr. Gibson reiterated that Mom’s cancer, is a mucin andocarcanoma. He warned us that there’s a high probability that the tumor has shed some microscopic cancer cells to other parts of the body.  But the good news is that none have grown to the point that they were visible from today’s procedure.  Our hope is that chemotherapy will destroy any metastic cells before they grow.

On Friday, Mom had surgery to have a permanent stent placed in the bile duct (which was being blocked by the tumor).  Dr. Gibson compared the metal stent to a chineese finger trap (see a photo). They’re keeping the external drain in until Monday (to make sure that the internal stent is working correctly), and then they’ll take it out on Monday the 13th.  This will mean she’ll have to give up her external bile bag, which I’m sure she’s become attached to over the last week (just kidding!).

She’s also supposed to be meeting with Lisa, the data manager for the ECOG study that we’re looking at right now for her chemo/radiation treatment.  That appointment is scheduled for Tuesday the 14th.  We should be able to get questions answered about her participation in that study during this meeting.

Dr. Zinda, an oncological radiologist will be meeting with Mom sometime next week to schedule a surgery to install the ports through which they will deliver the chemotherapy drugs.  These are called venous access device (VAD) and are surgically implanted devices that provides long-term access to a major vein.  Not a pleasant thing to look toward, but it will allow her to start her chemo treatments soon.  It’ll also mean she won’t get poked with needes every time she goes in for treatment, which in general will be a very good thing. Here’s more information and another good definition.

The following Friday, June 17, we’re meeting with her oncologist, Dr. Diggs, to talk about treatment options.  I’m hoping that her treatment will begin the following week.

For those of you would would like more information on pancreatic cancer, I’ve found the National Cancer Institute to be a good source: http://www.cancer.gov/cancertopics/types/pancreatic

I’ve found that breastcancer.org is a good website in terms of providing lots of good, readable content on cancer treatment (esp. what to expect from chemotherapy).

Here’s a list of clinical trials that Mom may be eligible for:
http://www.cancer.gov/search/ResultsClinicalTrials.aspx?protocolsearchid=1657219

Here’s info on the treatment that her oncologist, Dr. Diggs, recommended.
http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=258056&version=patient&protocolsearchid=1657219

Also, here’s a brief bio on Dr. Charles Diggs. and one for her surgeon who has been leading up her diagnosis and treatment, Dr. Scott Gibson.

On Friday morning (June 3), Mom met with Dr. Sharon Weber, a doctor of surgical oncology at the University of Wisconsin Hospital.  After looking at the CT scans that were sent from St. Mary’s, Dr. Weber told us that it’s her opinion that the tumor is currently inoperable. So our next step is to do a laparoscopy next Thursday to check for other tumors before beginning chemo and radiation.

The tumor (which I am considering naming Poco in order to encourage a tiny tumor with a slow growth habit) is in a part of the pancreas called the uncinate process.  When it’s in this location, it can be there for a while without exhibiting symptoms, which may be why it could get to be 4×3.7 cm in size before causing problems.  It doesn’t seem to have masticated (spread to other parts of the abdomen), which is a good thing.  However, the tumor (Poco) is classified as advanced as it involves about three centimeters of the superior mesinteric vein (SMV), and Dr. Weber thinks it is unlikely that any doctor would be willing to operate at this point.
“So what do we do next?” you ask?  We need to do a laparoscopy to look for tumors that may have spread but didn’t show up on the CT scan.  We want to know this before we head into a chemo/radiation regime because radiation won’t be effective if it has metastasized. Mom called and made an appointment for Thursday, June 9 to have this operation done (it will be an out-patient surgery).

We would also like to get a wire stent implanted so Mom’s bile goes back to the GI track instead of draining externally. This would be another relatively minor surgery, and we still have to look into scheduling it.

Mom should be able to start chemo and/or radiation in the next few weeks.  Depending on which course of action we take, the chemo/radiation regimes take around six weeks and then you wait another four weeks or so before doing a CT scan to see how much the tumor has shrunk.  The goal of these treatments is to shrink Poco to the point that he can be removed (probably by Dr. Weber).

So that’s our news right now.  I won’t have any further updates until after the laparoscopy results are back which won’t be until next Friday at the earliest.  Besides reeling from the magnitude of this news, Mom feels all right, and we’re all pulling together to find our way through this maze.  I know that we have a lot of people out there thinking of us and sending us their wishes and prayers.  It is very much appreciated.

The past three days were tough ones.  Mom had a couple more
procedures done, and at this point we’re all learning as much about pancreatic cancer as we can.

On May 29, Dr. Baker did a procedure called a percutaneous transhepatic cholangiodrainage (PTCD) with biopsy. He was able to insert a tube in the center of Mom’s abdomen that goes through her liver, down the bile duct toward the pancreas.  He then inserted a drain so the bile that has been backing up the from the liver, gallbladder, and pancreas can drain to a bag outside her body.  He also took a biopsy of the tumor that sits at the head of the pancreas.

Later that afternoon,  Dr. Allen explained that the tumor is about 3×4 cm (medium-sized as he described it) and is located right at the head of the pancreas.  The biopsy showed a mucin Adenocarcinoma tumor which means that it probably started in the pancreas.

This isn’t the news that any of us wanted to hear.  It’s hard to treat pancreatic tumors. The tumor is encroaching on a major blood vessel (the superior mesenteric vein) making surgery very difficult.

Dr. Diggs, the oncologist talked to our whole family on Monday morning.  He said that there are two doctors at the UW Hospital who may be able to do surgery to remove the tumor at this point.  He and Dr. Gibson, the surgeon, are going to send Mom’s films to them this week to see what they think.  If surgery is not possible immediately, the primary treatment will probably be radiation and chemotherapy with the hopes of shrinking the tumor  to the point that it can be removed.

They may also need to do additional endoscopic surgery to implant an internal stent so the bile can drain internally into the intestine.  They’ll also want to do laparoscopic surgery to look for other tumors in the abdomen.

Dr. Gibson kept Mom in the hospital on Monday in case the UW doctors would be able to transfer her directly to the UW on Tuesday. However, this morning they said that they wouldn’t be able to see her until later in the week, so after a mind-bending weekend, she’s back at home as of mid-day on Tuesday.  She has an appointment scheduled on Friday morning with Dr. Webber at the UW.  Hopefully, we’ll know more after that, but who knows, it could be until next week before they run the next set of tests (MRI, catscans, ultrasounds) that need to be done.

It’s been a completely surreal set of days and I know we’re all still trying to absorb information.  The doctors have been very helpful and informative, and I’m glad that Mom gets a chance to be home for a while until we take next steps.

I have lots more details on treatment options, and I’m looking into support systems for families struggling with cancer.  I’m also learning how to talk about this and internalize it to my life.  I know we all are. So this isn’t a fun note to write, but I know that there’s an amazing group of people out there who love Mom and who will be interested in following her condition.  If you have questions, please give me a call.

At this point, we’re glad that there are a variety of treatment options available, and we’re moving forward with a hopeful attitude.
~ Althea

In a recent twist of events, my mom is residing at St. Mary’s hospital while they run a variety of tests to determine what is wrong with her pancreas.

Mom suggested that I post updates to this website so her family and friends can stay appraised of her condition.

On Thursday afternoon (May 26), Mom made a doctor’s appointment because she was experiencing blood in her urine.  After running some tests, they determined it was kidney stones (which she’s had at least once before).  However, when they ran the tests (doppler ultrasound) to diagnose the kidney stones, they found that there are other problems and they admitted her to St. Mary’s Hospital for further testing.
On Friday night, they ran a contrast catscan and identified a blockage in her pancreatic duct.  See here for a diagram of the pancreas.
Also, here’s one site (of many) that describes the function of the pancreas.

This afternoon (Saturday the 28), doctors did a cool-sounding procedure (to me, but I’m odd like that) called endoscopic retrograde cholangiopancreatography (ERCP) where they ran a tube down mom’s throat, through her stomach, and to the doudenem.  Here’s a nice website describing that procedure.
Unfortunately, the endoscopic tools were not able to clear the mass that was blocking the tube leading out of the pancreas.  As a result, we’re now waiting until tomorrow when doctors will try a different procedure.

At this time, Mom says she feels just fine (besides having been in the hospital for the last couple days, being on a liquid diet, and having an IV).  Her potassium levels are very low (probably as a result of her pancreas not being able to secrete its enzymes, and I think she has slight jaundice.  Her bloodwork has shown abnormalities (which is why they found all this in the first place), her gallbladder is enlarged with possible gallstones and her liver apparently has fatty deposits.  It’s quite likely that these are related symptoms, but the doctors still have some work to do to find out what is wrong.

Tomorrow, the plan is for doctors to use a needle to come at the pancreas from the side.  I’m not sure which procedure this is, but the word from the doctor was that they were hoping that using this technique that they’ll be able to clear the blockage, insert a stint into the currently blocked pancreatic duct, and get a biopsy of the offending mass.
I think it’ll probably be a few days then until we hear back about the results of that test (being Memorial Day on Monday).  Doctors have ideas about additional tests to run on Tuesday, but I don’t have any details on that yet.

That’s a rough description of the situation over the last couple
days.  Maretta came home from college last weekend, so all four of us kids are home, and between us and Dad and Terry, we’re keeping Mom well-occupied.  I plan to update this site as we know more.
All the best,
Althea