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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Cutting Edge Medicine

Dave’s regular oncologist ordered a relatively new test for him.  Basically a biopsy sample is sent off to a company called Foundation One.  They look at the specimen for genomic alterations which may help identify therapies to which your cancer might respond.  Apparently the test is quite expensive and likely be declined by our insurance.  Dave’s oncologist assures us that this will not be an issue.  

Dave’s results came back –

6 genomic alterations

3 therapies associated with potential clinical benefits

8 clinical trials

The three therapies with potential benefits are not FDA approved for metastatic colon cancer but are approved for other tumor types.  There are 8 clinical trials available in phases 1 and 2 currently.  Only one of them is geographically close to us.  So, is this expensive test worth doing?  I think so.  Having options is a very good thing.  When we have talked to other about this test, the words “cutting edge medicine” inevitably come up.  While I appreciate being on the cutting edge, I just wish it was a little further along.

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

We Interrupt all this Gratitude with an Update

Dave had a scan this morning.  The first report sounded like this –

Just looked—-
The liver looks better, the lung is essentially the same—some lesions are a mm bigger or two (very small) in the lung, but essentially background noise-ill take it.   I think its slowing it down and happy with it as is……

One thing we can talk about ias potentially adding back in irinotecan to vectibix or erbitux. It can increase the side effects a little as you can imagine has more side efffects. I mentioned that way back when and wanted to see where we were in terms of tolerablility after all you’ve been throgugh

We can talk more details when I see you next, but happy with the scan.

And as is typically the case, when we read the actual report, questions arose.

IMPRESSION:

1. Overall mixed response.

2. There has been increase in size of multiple pulmonary nodules and 2 new pulmonary nodules are present as detailed above.

3. Each of the previously noted liver lesions has decreased slightly in size and no new lesions are present.

So, when Dave meets with his oncologist again, he will decide whether to add back the previously used chemo drug into the mix.  Not terrible news but not as positive as we had hoped.

xoxo

Robyn

Unanswered Questions

Dave had his scan today.  This is the email response from his doctor —

David,

We ignore the increase in size in the liver lesions as this is post treatment effect and inflammation.
The lung nodules are slightly bigger but not much-as expected.

The liver multiple lesions all appear to have increased in size. These are
all diffusely low in density. 2 of the target lesions have clearly
increased as noted above. Additional lesions also appear larger. The
subcapsular lesion previously measuring 5.0 x 2.5 cm now measures 5.2 x
3.4 cm. Adjacent to this a lesion previously measuring 21 x 19 mm now
measures 31 x 27 mm. The spleen pancreas kidneys and adrenal glands are
not remarkable.  The gallbladder is not remarkable  No mesenteric or
retroperitoneal mass or lymphadenopathy is seen.

lungs demonstrate increase in size of several of the previously noted
metastasis. Anteriorly in the right mid chest the previously noted 7 x 6
mm nodule now measures 12 x 10 mm. In the lingula the previously noted 11
x 9 mm nodule now measures 16 x 16 mm.. A third nodule seen posteriorly in
the right mid to lower chest previously measuring 11 x 9 mm now measures
15 x 12 mm..

No ileus or obstruction is noted. Review of the bone windows demonstrates
no evidence of sclerotic or lytic bony metastasis..

IMPRESSION:
1.  The 3 previously noted pulmonary nodules are each increased in size on
todays examination.
2. Multiple liver lesions are also increased in size on todays study.

Did you notice “2 of the target lesions have clearly increased as noted above” but there was nothing above?  Dave talked to his doctor and he said that he believes the increase is due to the SirSpheres treatment but it could be that the tumors have indeed grown.  I guess we will know more when he has his MRI or PET scan in the next few weeks.

Dave also had an EKG today.  He has been noticing some irregular heartbeats.  We are waiting to hear what that test showed, if anything.

We will let you know when we know.

xoxo

Robyn

When We Went to Admitted Freshman Day and Met Us….

ImageSamantha and I spent Saturday at CNU for admitted freshman day.  For several weeks. Sam has been connecting with people on the Facebook page set up for the Class of 2017.  She found one girl with whom she thought she might room.  I suggested that maybe she would want to meet this person IN person before she decided.  In case, you know, the girl couldn’t carry on a conversation in person or was a real weirdo or something.  Samantha looked at me like I was a clueless, out of touch, dinosaur.  

 

After the kick off part of the day, the students headed off in groups to do a scavenger hunt and get to know the campus and each other.  Samantha and the girls from Facebook arranged to meet up during this time.  I sat in the parent session feeling overwhelmed and excited and a little sad about my oldest child heading off to college.  Also, I felt some jealousy.  Wouldn’t it be great to be back in college again dedicated only to learning and exploring and having fun?!

 

The speakers were amazing.  Such smart suggestions and clear expectations of the students.  There was a student panel where current CNU students shared their experiences, advice and even regrets.  I wanted to whip out a pen and paper and take notes, but instead I texted Dave all the important details that I didn’t want to forget.  CNU is a wonderful place.  I am so proud of Samantha for finding the perfect fit school for herself.  The academics are first rate, the campus is beautiful, the dorms are ridiculously nice, and there is such a community of caring committed to helping your child achieve success.  Without Samantha there to give me “the eye”, I asked a question during the Q&A.  It had to do with finding a roommate (I mentioned Samantha had been looking online) and whether it was important to room with someone in your same field of interest or program like honors or leadership, since they had talked about living within your “Learning Community”.  

 

The session ended and a lady approached me and asked who my daughter was because her daughter had also been networking on FB.  We figured out that Samantha and her daughter, Kirsten, were two of the five girls meeting up.  We continued to chat on our way to the picnic lunch about all manner of things.  Kids, where we live, what we do, the usual.  We found that we had lot of things in common and got along really well.  Somehow the conversation turned to having cars on campus as a freshman.  I told her that we were going to let Samantha bring her car mostly because I knew she wouldn’t leave every weekend, that she would get involved in lots of activities at school and that her dad was sick so I wanted her to have the option to be able to come home if the need arose.  Turns out that Jennifer’s husband has Stage IV bladder cancer.  We were both stunned when we realized HOW much we have in common.  We talked about treatment and prognosis and challenges and perspectives.  It was incredible to speak to someone who literally knew exactly what I was going through.  

 

Jennifer’s cell phone rang as her daughter was looking for her.  She was with Samantha and both girls were surprised that the moms had connected and were hanging out together as well.  After we finished lunch, we went on a tour of the dorms.  (You cannot imagine how nice they are.  Freshman live suite style and by sophomore year you have a kitchen and living room too!)  Jennifer told her daughter about our uncommon thing in common.  Along the way, Kirsten talked to Samantha about it.  On the drive home, Samantha said that it was so nice to have someone to talk to who understood.  I couldn’t agree more.  Even before the cancer connection, the girls had decided that they had found someone with whom to venture into college life, and I am so happy they did.  As Jennifer emailed me later, “Obviously not what any of us want to have in common, but how amazing yet no coincidence that we now know each other.”  I couldn’t agree more.

 

xoxo

Robyn

Living with Cancer

ImageI have had a slight change in mindset recently.  Two times recently I have said out loud “Dave is living with cancer and will be living with cancer for the rest of his life.”  Please don’t interpret this as me giving up hope.  I HOPE that the “rest of his life” will be a long long time.  I HOPE that one of these chemo drugs will stop the tumors dead in their tracks.  But for whatever reason, I need to acknowledge the reality that he has multiple tumors in his lungs and liver that are growing and that he is not a candidate for surgery – the only cure for colon cancer.  He is fighting hard every single day to battle down these cancer cells while still working, attending school events and being an incredible dad and supportive husband.  He is stronger and tougher than anyone I know.  I feel this strong need right now to identify and honor what he is doing.

xoxo

Robyn