Clinical Trial Day #8

We arrived at Hopkins by about 8:30 this morning for a 9AM appointment with Ellen, the clinical trial nurse.  When 10:00 had come and gone, I started to nudge Dave to call or email her in case she had forgotten that he had an appointment this morning.  In our other dealings with Ellen, we have noticed that she can be a bit scatterbrained.  Dave was convinced that she was probably just running behind schedule and told me that I was stressing him out.  One of our friends from the retreat arrived shortly after that so we passed the time listening to his very entertaining stories.  He is just a great person – so optimistic in his tenth year of dealing with colon cancer.  At about 10:30, Ellen wandered through the waiting room and I kid you not, looked absolutely surprised to see us.  She asked me if we were waiting to meet with her.  (sigh)  To her credit, she is a caring and personable nurse but seems to be completely lacking in any kind of organization.  She needed to consult with another patient but returned about twenty minutes or so later and took us up to the chemo suite and met with us there.

Dave’s lab results look great overall.  His blood counts are within the normal range.  His liver function results were high but that is not unexpected with the disease, surgeries and Sirspheres treatment he has had.  She explained that they are seeing side effects from the SGI (trial drug) starting around day 10.  She also warned that so far, all the other patients have experienced delays in the administration of the day 15 Irinotecan due to blood counts being too low.  So, we will see what happens.  He is already feeling a little stomach distress and nausea so headed to bed pretty early tonight.  I am thankful that he was able to have the infusion today.

Just so you don’t think it’s all heavy, deep and real around here, I just wanted to mention that we have had a really relaxing winter break so far.  We are lucky enough to have a full two weeks off of school because Christmas and New Year’s Day fell on Wednesdays this year.  The first few days were busy with the shopping, wrapping, more shopping, and the more wrapping that precedes Christmas.  We celebrated early with Dave’s sister and her family.  It is always nice to get the 7 cousins together, and Kris and Franck made the yummiest lasagna I’ve ever tasted.  The kids slept in Christmas morning so we opened presents leisurely and enjoyed the slower pace that comes with having kids that are getting older.  As much as they enjoyed being on the receiving end of things, they also enjoyed giving gifts this year too.  Parker’s were handmade, many on the rainbow loom.  Grant and Samantha hit the mall and found treasures at the “As Seen on TV” store as well as some other shops.  In the afternoon, we headed over to my parents to exchange more gifts and enjoy some of Grammy’s yummy cooking.  The day felt just right all around.

Dave and I went to see the movie, Her.  It is so thought provoking and beautifully filmed.  I believe that Spike Jonze is a genius.  Definitely put it on your list of movies to see.  The kids have had friends over.  In fact, Grant’s friend, Sean, is with us until Thursday.  I’ve checked things off my to-do list like cleaning out the car, undecorating from Christmas, helping Parker sort out her room.  I even went into work to feed the snake and got my desk there organized.  I’ve spent time catching up with friends which has been nourishment for my soul.  We are also planning on getting away for a few days before school starts back up on Monday.  Originally, we thought NYC would be fun, but after seeing the FRIGID temperatures in the forecast, we are rethinking that idea!

I hope that 2014 brings you ALL that you need and at least some of what you want!  Happy New Year!

xoxo,

Robyn

PS In no particular order, here are some of my favorite Christmas gifts this year.Image

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Chemo Day

Dave has his own routines and preparations for chemo days.  He makes sure his Nook (now his Kindle Paperwhite) is charged up and ready to read.  He packs bottled water, snacks and his insulin and meter.  After he showers, he uses a lidocain cream on his port which numbs the skin so when it is “accessed” he doesn’t feel any discomfort.  The bulk of his preparation is mental though, I’d say.  Understandably he is usually a little grumpy the morning of or even the day before chemo.  He has to brace himself and get himself psyched up for another round of feeling crappy.  I don’t know how he does it.

I don’t routinely go with him on chemo days.  When he starts a new medication, I will usually go just in case he has an adverse reaction which would make driving home unsafe or challenging.  Although he has been on Irinotecan before, I am going today because it is a much longer drive home and we don’t know how quickly or strongly he might react this time around.  I have my own little things that I do when I go with him to appointments.  I don’t wear my normal perfume or any kind of scented lotion.  If your stomach is already queasy, the last thing you want to do is have to sit next to someone wearing a strong scent.  I pack mints and bottled water ever aware of morning coffee breath.  There is one involuntary response that I have that I can’t seem to avoid.  Whenever I am in a situation that requires quiet, like a concert or speech or sitting in a doctor’s office, inevitably I will begin to cough.  Nothing brings on a cough faster than being in a waiting room with the sign that reads “If you are ill, please see the receptionist for a mask or reschedule your appointment”.  I will be as healthy as a horse and that cough comes on.  I am sure it is stress.  The last thing I would want to do in a room full of immunocompromised people would be to spread germs.  I don’t blame them for giving me the stink eye.  So, today armed with assorted candies and drinks, I am hoping to stave off the nervous cough.

I’ll let you know how today’s treatment goes.  Here’s hoping to stopping those numbers from rising and stomping those tumors back into place.

xoxo,

Robyn

Numbers Game

Dave’s CEA number has been steadily creeping up.

October 14th – 22

November 15th – 49

December 11th – 150.5

December 23rd – 201.6

He has gone up to Hopkins 5 days out of the last 7 for his clinical trial drug injection.  This drug is supposed to decrease his resistance to Irinotecan, a proven colon cancer chemotherapy drug.  Tomorrow he gets an infusion of Irinotecan and as long as his blood counts stay up, he will get another infusion the following Monday too.  I am anxious for him to get back on tumor fighting meds as soon as possible.

xoxo

Robyn

5 Christmas-y Thankful Things

1. By some miracle the gifts have all been bought and wrapped.  The shoppings gods were smiling on us Saturday because we encountered manageable lines and found all the items for which we were looking.  Woohoo!  (Although this is the first year that I can remember that one of the kids is not getting their #1 wish list item.  I am hoping the surprise gift will soften the blow!)

2. Dave has a new set of wheels for the many many trips to Baltimore that he will be making while on the clinical trial.  He really wanted a hybrid and picked out the Subaru Crosstrek in bright lime green.  We are affectionately calling it the “snot bubble”.  I will be much less stressed knowing that he is in a safe and reliable car as he journeys to Johns Hopkins.

3. The gifted minds and hands of the doctors and nurses who are treating Dave.  And especially for the ones who also practice medicine with their hearts and souls.

4. The five of us together.  It is nice to have a full house once again.  I am also enjoying having the kids’ friends over contributing to the hilarity and energy here.

5. Friends and family.  Friends and family.  Friends and family.

Merry Christmas.

Love,

Robyn

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A Right, Not a Privilege

I was looking something up on our Carefirst member portal when I came across this –

Calendar Year To Date Claims Paid Jan 01, 2013 – Dec 31, 2013 $264,759.06

This is the negotiated amount Carefirst paid on our behalf this year.  I can’t begin to imagine what the actual billed total must be.  I am so thankful that we have excellent health insurance.  No matter what our copays or coinsurance amounts, they pale in comparison to the exorbitant cost of treating cancer.   I believe that everyone should have health insurance.  Hopefully like your car or home owners insurance, you will never need it for anything catastrophic.  I certainly never thought we would need it to this degree.

xoxo

Robyn

Another Day, Another Adventure

ImageI spent a decent part of my morning staring at images of Dave’s liver.  The radiologist and ultrasound tech were having difficulty determining what might be live tumor and what were areas that had previously been treated either surgically or with the Sirspheres.  As the doctor put it, “We can see that it is abnormal tissue.  We are just not sure what makes it abnormal.”  Eventually they brought in a second ultrasound technician and more equipment.  This additional equipment allowed them to import Dave’s latest CT scan onto the screen, so that as they moved the transducer around, the CT images would also shift allowing them a comparison to what they were seeing via ultrasound.  I don’t mean to brag but I was able to see Darth Vader, a horseshoe crab and The Grimace in there. 

There were a lot of people in the small room.  There was someone from “research” who arrived with two styrofoam boxes in which to carry the biopsy samples.  She spent much of her time pacing in the hallway.  There were three doctors from pathology who were ready to look at the samples under the microscope to determine if they were adequate.  There were two radiologists to do the actual biopsy, two ultrasound techs and a nurse.  Oh, and me.  I was in there.  Once a promising area was located via ultrasound, they were ready to go.  Dave was given preemptive Oxycodone as the procedure promised to be pretty uncomfortable.  They also numbed his skin via injection.  As the big needles were coming out, I got nervous and excused myself out into the hallway.  I couldn’t believe that no one asked me to leave. I kept waiting for my exit cue, but it never came.  

I sat in the waiting room and sent a few texts and responded to email.  A very short while later, I saw the doctor? from research walk by with her styrofoam boxes.  I figured they must be done and was amazed at how quickly they were able to finish up.  Minutes later I found out why.  Apparently they tried to approach the tumor location from one angle closer to Dave’s belly button but they weren’t able to get to the spot.  So they tried again from his side – between two ribs.  This caused Dave to yell out in pain.  At that point, they determined that they would not be able to do the biopsy.  The radiologist explained to Dave that because it was for a clinical trial they were not going to put him through all of that pain to get the tumor sample.  If it were a procedure he needed, they would have pressed on.  

Our understanding of the clinical trial was that in order to be eligible a biopsy had to be attempted.  If it was not successful that would be okay.  We weren’t entirely sure if what was done today would count.  On the drive home, Dave got an email from Dr. A reassuring him that they would still be able to move forward with the trial.  So our little story had a happy ending.

xoxo

Robyn

Beautiful Devastation

We found out this morning that the youngest member of our not-so-merry band of colon cancer retreat participants died on Wednesday.  His wife had emailed us a few days prior to let us know that the end was near.  They just got married in October.  Both young, both beautiful.  In one of their wedding photos there is a wooden door that is open.  On one side, J is leaning the side of her head gently against the door, her eyes slightly closed, a small smile.  She looks peaceful and happy.  On the other side, K has his back against the door with his head touching it ever so slightly.  He looks content.  It is an image that I cannot shake – so stunning and so heartbreaking.  I am sad for their loss.  For their little girl who won’t know her father.  For the life K didn’t get to have.  And for the lovely woman who was his wife for two short months.  

xoxo

Robyn

Today’s Loop the Loop

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When we left off, Dave was waiting to hear about scheduling a biopsy.  Before we left Hopkins on Wednesday, the nurse confirmed with us that the best number on which to reach Dave is his cell phone.  When I got home from work yesterday there were several messages from the biopsy clinic on the home voicemail.  Of course, when Dave tried to call back, it was too late in the day.  This morning I ran a few errands after dropping Parker off at school.  When I got home there were two more messages from Hopkins.  Clearly someone did not get the memo that the cell phone was the number to call.  

Dave got a hold of a scheduler in the biopsy clinic who said they wanted to schedule a liver biopsy.  Because Dave had the Sirspheres treatment this summer, he wasn’t sure there was live tumor to biopsy and wanted to make sure that they were also looking at his MRI.  The scheduler said she would speak to one of the doctors and call him back.  In the meantime, Ellen called.  She told Dave that they were unable to biopsy his lungs because the location of the lung tumors would make them dangerous to biopsy.  She said that Dr. A was going to consult with the biopsy doctor, and they would have an answer for us by Monday.  Ellen also mentioned that in Dave’s labs from Wednesday his CEA was up to 150.  Although it wasn’t altogether surprising news, it wasn’t great to hear.  It has tripled in the last month.  I know I have mentioned before that the CEA isn’t the best test and the numbers can go into the thousands. 150 alone isn’t necessarily anything to panic over.  However, what we know about it as it relates to Dave is that any time it has been on the rise, he has had tumor growth in his body.   

Not expecting to hear anything more today, Samantha (who came home today!!!) and I headed out to grab a bite to eat.  When we returned, there was a message from both the biopsy clinic and Dr. A.  (Why aren’t they using the cell phone number?!)  Dr. A’s message was something along the lines of “Call me back if you want to or I will talk to you at your appointment on Monday.”  Huh?  What appointment?  So, I called Dave to see if I had missed something.  He had no idea what I was talking about and began calling both offices back.  Unfortunately he wasn’t able to reach anyone.  He emailed Ellen who responded telling him that she could see that an appointment had been scheduled for Monday at 11:30 at the hospital.  Dave logged into his patient portal and saw that it was for a liver biopsy.  Ellen included an attachment in her response which gave the necessary details for an endoscopy.  The endoscopy would be for a lung biopsy.  Having had no contact with anyone from the biopsy clinic and playing phone tag with Dr. A means that we will drive up on Monday to Hopkins and pray that they are expecting us and that Dave can indeed have the liver biopsy.  Here’s to hoping.

xoxo

Robyn

 

What a Day….

Before I start my story, I would like to say that I am very glad that we had already made up our minds about Dave participating in the clinical trial at Johns Hopkins.  After yesterday’s visit, I don’t think that I would have had the best impression of the place.  To be fair though, perhaps some of the delay and disorganization was due to the previous two snow days and the fact that they are fast tracking Dave through all these steps to get him started as soon as possible.

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Our day started stressfully as we sat in traffic, and a drive that normally takes a little over an hour took closer to two.  Luckily the head research nurse who was meeting us at 10AM didn’t mind having a few extra minutes in her office.  We met with her and reviewed the clinical trial consent paperwork and she answered questions that we had.  I felt pretty comfortable with my understanding of the trial after our first visit, but Ellen explained it in a way that really clarified the intent.  This phase I study is for colon cancer patients who have previously been treated with Irinotecan.  In these patients, the cancer cells have become resistant to the drug.  The hope is that by injecting the patients with SGI, the resistance will be reduced and the Irinotecan will once again be effective in stopping tumor growth or even hopefully shrinking the tumors.

I asked if there had been any side effects noticed in the previous three patients.  She said that they had all experienced low blood counts at the high dosage currently being used.  The low blood count means that patients are more susceptible to infection, which can be serious, and has delayed their second administration of Irinotecan on day 15.  With the next three patients (of which Dave is #6), the purpose is to see if they also have the same reaction at that dosage level.  If so, the dosage will be reduced for phase II of the trial.  Dave will be treated with Neulasta at the doctor’s office if this happens or possibly our insurance company will let him give himself Neupogen through injection at home.    He also needs to have a biopsy done before he begins the trial.  This will either be to his liver or lungs.  Ellen said that the liver biopsy is reportedly more uncomfortable but the lung biopsy is more invasive.  We are waiting to hear back from the biopsy clinic to see what they decided after reviewing Dave’s scans.  The biopsy will be repeated on day #8 to see what cellular changes have occurred after having injections of SGI on days 1-5.

After Dave signed the consent forms, we headed off to the phlebotomy lab for blood work.  The waiting room was packed and at standing room only capacity.  They called Dave back, but he quickly returned.  Apparently they weren’t aware that he was going to do his blood draw through his port.  So we waited another half hour or so for him to be called back again.  I told him that I was going to go grab a cup of coffee and get him a bottle of water and that I would be back in the waiting room when he was done.  I returned with drinks in hand and grabbed an available chair to await his return.  Hours went by.  Literally.  Hours.  He had texted me at one point to ask me if I knew what kind of port he had.  Apparently they were not willing to use it since it was not done at Hopkins and they didn’t know what he had.  This was at 12:39 an hour or so after they called him back.

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At 1:35 I was still sitting there completely dumbfounded as to what could be taking so long.  I did have time to catch up on my People and Us magazines that were laying around so it wasn’t a total loss.  I heard a nurse calling Dave’s name because now it was time for his pre-trial physical/screening appointment.  I approached the nurse and explained the situation – that Dave had been called back into the lab several hours earlier and I hadn’t seen him since.  She went back into the lab and looked around.  He wasn’t there.  I wondered out loud if he had headed straight up for his scan and somehow I had missed him.  I commented that it wouldn’t be completely unexpected if he changed locations and forgot to mention it.  Also, cell phone reception in the hospital is spotty at best.  She called up to the CT scan lab.  They said he wasn’t there.  The Kimmel Cancer Center is not a huge place.  I was starting to worry but also realized there weren’t too many places he could be.  Next Ellen stopped by to ask if he was done.  I explained the situation to her.  She went back into the lab to look for him.  Eventually she went upstairs and found him as he was finishing up with his scan.  Apparently the blood work hadn’t taken too long.  The hold up was with using his port to inject the contrast for the scan.  When I was finally reunited with Dave, he said that he thought that I said I was going to lunch and I would meet up with him later so he went straight from doing bloodwork to have his CT scan.  When the first nurse saw us together she teased me “He’s huge.  How could you lose him?!”

If I gone up with Dave to get his scan, I would have missed a very hilarious (and loud) conversation between a man and his friend.  The man was telling his buddy about the time “Barbara bought me this man purse.”  He went on to describe the behemoth bag and how much more useful his current small manbag was.  Good information to know.  I also had time to contemplate the basics on which we had dropped the ball.  When Dave had his port put in, they gave us a little business card that had the make and model of the port on it.  At the time, we took it and threw it into the file folder not realizing that at a later date someone would want to know that exact information. Lesson #1 – Keep the card with the port information on it in your wallet.  You never know.  Also, while meeting with Ellen and later during the physical/screening appointment Dave was asked about his medicines and their dosages.  Lesson #2 – Keep a list of current medication with you.  How are we so clueless?  Between us we were able to remember everything.  And I came home and took pics of the labels so we will have it for next time.

The physical/screening appointment was uneventful.  The usual checklist.  At this time, Ellen mentioned that while she didn’t have the lab or scan results that she noticed that they had not done the correct bloodwork. So back to the phlebotomy lab we went.  After sitting around for another 15-20 minutes, I encouraged Dave to go ask what might be taking so long.  The response was that they didn’t have any orders for him.  (Insert head shaking, stupefied look here.)  So, Ellen was paged, the labs were ordered, and six hours after we had arrived, we were finally on our way back out the door.

It was a long day.  It was a stressful day.  And it was a slightly frustrating day.  But in the end, Dave has done everything he needs to do to start the trial with the exception of the biopsy.  The goal is to get that done ASAP and hopefully get him started December 23rd.  Day 1 involves more labs, an injection of SGI, followed by “8 hour labs”.  Days 2-5 are injection days only.  He would skip Christmas Day and go in on Saturday, December 28th instead.  Day 8 is another long day with labs, biopsy and Irinotecan.  And then if his blood numbers don’t plummet, he will get Irinotecan again on Day 15.  The entire cycle is 28 days and so far no one from the first group has done a second cycle.  Fingers crossed that all goes according to plan.  Did I mention that we are also changing insurance companies on January 1st.  Hopefully that won’t create any issues.

On the drive home I started thinking about the trial.  The part that confuses me is that it is pretty standard to cycle back to Irinotecan after having a break from it.  In fact, Dave’s next standard course of treatment was supposed to be Erbitux with Irinotecan.   I wondered out loud how they would know whether patients were responding to the Irinotecan because of the SGI or if they would naturally have responded to it anyway.  Dave was not interested in hearing my musings.  I guess that is a question for next time.

Between all this going on, getting ready for Christmas, and finishing up work, I am feeling a little overwhelmed.  One foot in front of the other.  It will all get done.  Or it won’t.  But either way, we will keep moving forward.

xoxo

Robyn