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

Brain Dump

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Today we drove up to Johns Hopkins to get a second opinion on the next steps in treatment.  While Dave’s oncologist here has been encouraging exhausting the standard lines of treatment before doing the drug trials, today’s doctor was saying the opposite.  Basically she thinks that the remaining options aren’t that great.  In her opinion, with Erbitux/Vectibix the bad outweighs the good.  The side effects including the awful rash aren’t worth suffering with when the efficacy of the drugs isn’t especially high.  The fourth line drug, Regorafenib, is not going to shrink any tumors.  The best you can hope for is stable disease which is NOT nothing.  Stable disease would be excellent.  In the end though she said in trials it added about a month or two to your life expectancy.  So, she did not paint an optimistic picture for the remaining standard treatments but you also have to keep in mind that she is working at a research facility and is leading one of the drug trials that she was recommending.

There are two drug trials available.  The first one (a phase 2 trial – Phase II: The drug or treatment is given to a larger group of people to see if it is effective and to further evaluate its safety) is not really a good option.  It is aimed at patients with “microsatellite instability”.  Since Dave is microsatellite stable, he is not precluded from the trial but so far it has only shown to be beneficial in the unstable group.  The second available trial, and the one Dr. A is heading up, is a phase 1 trial (Phase I: Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects.) If enrolled, Dave would be the sixth person to join the study.  This trial involves being injected with the drug SGI-110 for five days.  Then on days 8 & 15 Dave would get irinotecan which is an FDA approved colon cancer drug that he has had before.  While the idea of a Phase 1 study is not overly appealing to me, I do like that it is combined with a standard drug.

So, now we (Dave) need to decide which path to follow.  We talked out both approaches and tried to brainstorm pros and cons to both.  The biggest reason to do the drug trial now is because Dave is healthy.  Dr. A mentioned that oftentimes patients come to Hopkins after they have exhausted all of their options, but they are too sick at that point to join a trial.  The second compelling reason is that Dave can always go back to the standard lines if the drug trial doesn’t work.  My reservation against going straight to the drug trial is time.  By the time he goes through the insurance approval, screening and then does two months of the drug and has a scan, three to four months could have elapsed.  If the trial drug doesn’t do anything, then there is the possibility that the cancer would have had time to mutate more and grow.  Then you are trying to get back ahead of it.

Dave had an email exchange with his oncologist here tonight, and he is supportive of either treatment path.  His parents are supportive and lean towards the trial as the better option.  He will sleep on it tonight and likely call Dr. A in the morning and let her know that he is interested in joining her study.  And I am okay with it too.  I feel like we really hashed it out and like most of the decisions thus far, there seems to be a clear course of action.  Now we have to see if our insurance company supports the decision too.

xoxo

Robyn

Remember the Time We Went to That Retreat?

I came across this blog entry.  It was written by a woman who was in charge of filming during the retreat.  The video she is making will be used in the future with patients, caregivers and staff at Johns Hopkins.  Laurie’s husband, died of colon cancer so it is more personal for her, I believe, than just a job making an educational video.

http://our-cancer.blogs.hopkinsmedicine.org/2012/10/10/6-care-givers-in-a-room

You can read my perspective of the retreat here.

https://embracingtherollercoaster.wordpress.com/category/couples-retreat

xoxo

Robyn

The Real World

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There used to be a show on MTV called The Real World.  The tag line was something like “When people stop being polite, and start getting real.”  One of the positive things that happened over the retreat, is that it allowed me to get a little bit real with Dave.  I have kept many of my thoughts and worries to myself because I haven’t wanted to burden him.  But it was good to be able to talk to him and share my perspective and some of what I am thinking and feeling too.  Another positive was that many of the “experts” shared how vital it is to healing to let go of the small stuff and free up your mind.  The session on meditation was actually very valuable for both of us but especially Dave since he has a hard time shutting down all the ideas and worries bouncing around in his head.  Overall, I am glad that we went.  The sessions that I dreaded the most turned out to be relatively anxiety free.  The ones that I didn’t dread at all were the sucker punches to the gut.  Just goes to show that there isn’t much point in worrying because you worry about the wrong stuff anyway.

I never want to do a retreat like that again.

xoxo

Robyn

Victorious

So not everything during the weekend was gut wrenching.  We definitely had some laughter through all the tears.  Saturday night after dinner there was a “Social Gathering”.  This was in the form of the Newlywed Game.  Dave and I represented and brought home a victory for Team Tremaine.  We actually got 12 out of 16 answers correct.  Not bad.

One of the questions was “What will your wife say is the first thing that attracted you to her.”  D. replied, “Her looks.”  His wife was unimpressed with this answer as it obviously wasn’t what she had written down.  So he changed it to “Her McDonald’s bag.”  K. who was the youngest member in our group and recently engaged, leaned over to D. and said, “What are you doing, man?  You should have stuck with her looks!”

Some of the answers we got right were:

What will your wife say is her least favorite piece of your clothing?  Barry Manilow t-shirt

What candy best describes your first encounter?  Hot Tamales

What is your wife’s favorite store?  LOFT

Who is the worst driver?  Dave

Who is stronger?  Dave said me.  And I knew he would say me.

xoxo

Robyn

Broken

I had a hard time getting to sleep on Friday night partly because the bed in our room was tiny, and partly because I was anticipating what we might see and hear over the weekend.  It was kind of like Christmas Eve.  Only not.

At breakfast, the first couple we met was W&A.  They both looked so shell-shocked that we weren’t sure who was the “patient” and who was the “partner”.  We chatted briefly but mostly gave each other space to eat in peace.  Some of the Saturday sessions were whole group and some of them were broken up into patient and partner.  The patient group headed off to their session “Pharmacy” while the partners participated in a session about “Caring for the Caregiver”.  This was an opportunity for us to share our experiences with others who truly understand.  Honestly, I thought I was doing pretty well compared to some of the others.  Some were crying the ugly cry (the one where your face is red and twisted in pain) while others seemed defensively tough as nails.  I inwardly congratulated myself on being so together.

The wheels came off during a later partner session entitled “Insight into a Partner’s Experience.”  This turned out to be a woman named Liz who shared her story with us – from her husband’s initial diagnosis through his death.  I utilized all of my “I’m not going to cry” strategies from biting the inside of my cheek to counting ceiling tiles.  None of them worked.  The truth is that I have not allowed myself to cry very much throughout this experience, but you would have to be made of stone to not crack in this situation.  The only male partner, who was sitting to my left, was sobbing.  I couldn’t look at him.  Liz was crying softly as she shared her story.  I couldn’t look at her either.  When she got to the part in which she described her son standing in the shower in his swim trunks holding his dad up so they could bathe him, I broke.  Her children were basically my children’s ages when he was diagnosed.  This hit devastatingly close to home.

xoxo

Robyn