House Call

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Dave heard from his doctor at Johns Hopkins yesterday.  She called to let him know that he was officially out of the trial.  This makes sense because it clearly wasn’t working.  She took time to answer questions that Dave had about his scan and let him know that they may have some trials for him.

Today we met with Dave’s local oncologist.  He told us about a phase II trial that is available to Dave based on the genomic testing that he had done previously.  That testing showed that Dave’s tumor has a P13K activated pathway.  This pathway is known to be involved in cell growth and tumor survival.  The trial drug is being tested to see if it will block the activity on that pathway.  (At least I think that is what it all means.)  We also talked about radiation treatment.  This would be done as a palliative measure if Dave has pain from his tumors.  I asked about conventional approved treatment options.  Dr. S. told us we were essentially out of those.  There is one FDA approved drug that Dave hasn’t tried but Dr. S. said he was “underwhelmed” by its efficacy and felt that only one of his patients had seen any benefit from it.  So, we are back on the drug trial train.

After the appointment, Dave went home to lie down and I went to pick Parker up from play rehearsal and hit the grocery store.  While I was out, Dave got a phone call from Dr. S.  It turns out that the trial was closing to new colon cancer patients tonight.  So, in order for a spot to be available for Dave, the consent forms had to be signed.  Tonight.  So, Dr. S. made a house call.  He came over to our house on his way home from work.  He told Dave he has NEVER done that before.  I am relieved to be back in the care of Virginia Cancer Specialists.  I appreciate all that Hopkins tried to do for Dave, but I am grateful for the organization, short wait times and, most importantly, personalized care that Dave gets here.

xoxo,

Robyn

Hope Floats

I don’t know if I love the movie Hope Floats because of Harry Connick Jr. or if I love Harry Connick Jr. because of the movie.  Either way, if I am flipping through the channels and it is on, I stop and watch.  Every time.  There is a line in the movie about giving hope a chance to float up.

We spent today at Johns Hopkins.  Dave was due to start round 3 of the clinical trial.  He had labs and a CT scan done before meeting with one of the doctors.  She did not have good news for us.  The scan showed growth of previously measured tumors, growth of new tumors, tumors in lymph nodes that we didn’t remember hearing about before.  The words “innumerable tumors” were used in reference to his lungs.  All around a sucker punch to the gut.  Completely unexpected.  On the drive home we both commented how we expected to hear works like “stable” and “some shrinkage”.  What this means is that Dave did not start round 3 of treatment today.  Tomorrow they will look over all the measurements, but in all likelihood Dave will no longer be eligible for the trial because it is not working for him.  So, we will start looking at other options – another trial, something connected to the genomic testing Dave had done, or perhaps a conventional line of treatment.  We will let hope float up to take the place of utter disappointment.

After the letdown of Samantha’s appointment on Friday, with a few clicks of the mouse I found a potentially encouraging opportunity.  Right down the road from the cancer center is the Kennedy Krieger Institute which houses the Osteogenesis Imperfecta Clinic.  I spent twenty minutes on the phone with an intake specialist today and have already received appointment paperwork for Samantha to complete before her appointment.  I am so optimistic that they will have therapies or suggestions that are going to make her current situation more bearable and also help her in the future.  They have a multidisciplinary approach that involves an orthopedic surgeon, an endocrinologist, a radiologist and a physical therapist.  I am excited to have an expert team take a look at my girl.

Tomorrow we will talk to the doctors at Hopkins as well as Dave’s oncologist here.  Together I know that we will come up with a plan that will get us back on the right track.

xoxo,

Robyn

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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

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