Chicago, Here we go again!

Here we go again.  After two more 12 hour shifts, the first snowstorm of the season was looming on the radar. The first flakes started flying as we hit the road.



Snow starting to fall
Girls and I falling asleep Zzzzzzzzz.

 By the time we crossed the Wisconsin border, the snow was blowing and it was getting hard to see the road. We saw a jack-knifed semi and many cars in the ditch. We journeyed on. Illinois welcomed us with sunshine coming up over the horizon. The blinding snow stopped.



Bathroom break

We made it in time for my appointment. I had vital signs taken, labs drawn, and filled out questionaires. We went over the side effects of Lucitanib, the drug I will be taking. It can cause anorexia and can damage the heart which is the reason behind all the tests and monitoring. Lucitanib blocks the action of certain molecules called "angiogenic factors" that may cause tumor cells to grow. The biopsy I had back in April identified that I had elevated levels of the factors that Lucitanib blocks. Due to the potential cardiac side effects, I will have check my blood pressure at home twice a week.

This drug has shown promising results in previous clinical trials. This is a phase 2 Clinical Trial specifically for Metastatic Breast Cancer. The trial will compare the efficacy of 2 doses of the drug. Participants are randomized to the dose we are given. I am the first person in this trial.  





Labs



Waiting

Study Questions

Part 2

BPs with "Doctor's Office" Accuracy!

There was no peripheral IV start. No waiting for the Pharmacist to mix my chemo, then waiting for it to infuse. Lucitanib is a pill. Down the hatch it went. After I took my first dose, I had to wait two hours, then have another EKG to compare with my baseline.

Study Drug





Lacitanib

The hospital sits next to a beautiful park, Washington Park. We walked together, exploring and enjoying a lovely 60 degree day. We found a massive, breathtaking sculpture called The Fountain of Time, created by artist Lorado Taft in 1920. An ominous hooded figure, Father Time, stands alone and faces probably 100 carved figures as they move past in all the stages of life. Birth, family, struggle, love, art, religion, war,.... death all pass time. There were waves and movement in the concrete, a couple kissing, a mother holding her child, a woman suffering... all melting into one another, part of each other in a real and lasting way.

Maybe many people who experience this sculpture are moved by it in some way. I saw myself among those figures. I feel my time is running out...





Fountain of Time



Fountain of time

Starting this drug means we need to follow the clinical trail to the letter. All of my labs and scans have to be completed in Chicago, so I'll be back two more times in November. Then, in December we will do scans and see if it is working. If it is working, we need come back 2 weeks later. Then, once a month after that.



Drive home

Fun treat on the way

Chicago, Here we come!

After working two 12 hour shifts- getting off work at 9:30pm- we packed up the girls and the car and headed to Chicago. According to our phone GPS, only 6 hr 51 min to go.

How far would you go for a new treatment? For a potential CURE? And at what cost? For us, a 7 hr drive or a one hour flight seemed like small things.



6 hour 51 min

I'm thankful I have a husband that likes to drive. He let me sleep the whole way. We stopped in the morning to have breakfast a pecan waffle with whipped cream and crispy hashbrowns.



Breakfast

Then, it was off to Hospital Land. We checked in and handed over my medical records. We were roomed and waited for the doctor to come in. We ran down of the last five years of my life with breast cancer. We learned what the study would entail.



Waiting for the Doctor

Then, it was time for tests. First, the EKG and then a head CT. After all the tests were complete, we were told we had to wait a week or so for all the results. Then, it would determined if I met the criteria for the clinic trial.



EKG

After a day at the hospital, it was time for Chicago style pizza. Yummy!

Pizza

We spent the night and headed back home the next day. First, we stopped a for doughnut.

Out of the Blue

We received a phone call from the Mayo Clinic today to see if we wanted to be put on a short waiting list for a new clinical trail. Of course, we said YES! He told us to continue with the plan for radiation and he would call us in the next week or so with further information.

Later this afternoon, the University of Chicago called to say that the clinical trial that Dr. Laudi had inquired about was now open. They wanted us to come to their hospital the following Monday to get baseline numbers. I would have labs, an echocardiogram, an EKG and a CT of my brain (always reassuring to see it's still there!).

From NO new options to TWO!!!

Note: A week later we received a call from the Mayo reporting that their trial was full.

PET/CT Results

We did one more round of carboplatin. About a week later, Mark and I were out for a date night. I noticed I had been having increased back pain, so I asked Mark to call the clinic in the morning to see if we could move my scan date up.

They were in able to get me in the next day and I had orders to go straight to the clinic afterwards to read the results. Dr. Laudi pulled the scans up and they showed new tumors in my rib and the one in my lumber spine that was pushing into the spinal cord space causing the pain.

Olivia is bored.

a

Photo by Olivia of Dr. Laudi
as he ponders our next move

Dr. Laudi called the the research nurse to see if she had any clinical trials that I would qualify for. She had nothing. He referred me to the radiation clinic. I asked him about other hospitals that might have a clinical trials. We looked at the U of MN, but they had nothing. I asked about Chicago. We looked and they had one, but it was not open. Dr. Laudi said he would call in the morning to see what the status is of that clinical trial, if it would be opening soon and if I could get on it.

Carboplatin- my new chemo

After a bust at The Mayo, Dr Laudi considered hormone therapy or another IVchemo. A chemo called carboplatin was chosen, because Dr. Laudi felt it would work faster on the liver tumor. We would do two rounds of carboplatin followed by PET/CT scans to see if it was working.


 

Chemo Buddy Larissa

Hanging out together.

Carboplatin infusing.

Neupogen for after chemo

to increase my body's neutrophils
(cells that help fight infection). 

The Mayo Clinic



Here we go:

7am on the road

 We lucked out and found a meter to park the car with 20 minutes to spare before we had to check in.



We made it!




We shared a quick breakfast while we waited.



We checked in and were sent down to lab. Two pokes and two tubes of blood.

My blood got to take a ride on conveyor belt. Our next appointment was not till 2:30pm. With time on our hands and a beautiful day outside, we did a quick Google search to find some fun things to see and do.




My blood going for a ride.

We chose to tour the Mayowood mansion, the home of Dr. Charles Mayo co-founder of the Mayo clinic. The house was built on a beautiful on farm land, close to the river. It was a great tour.

 After the we grabbed lunch, we took a walk around the Mayo.

YUM!

The Mayo and Me.

Beautiful, interesting art.

   We checked in again and waited. After my weight and vitals were done,  Dr. Hoyday came in and asked us what we wanted for this visit.

I told him, "I want a cure."

He did not want to give me false hope. He said, "I have no cure or magic pill."

We started going over my timeline of the past 5years. He was a little confused about my pregnancy in February 2009 and what treatment I was receiving at the time (I was getting radiation, and had PET/CT scans). We told him about our miracle- our gift from cancer- Olivia Joy. We talked about the hormone therapies, the chemos and the clinical trails. Then, we went over my treatment options still available:

1. Chemotherapy, ex: Carboplatin, Navelbine, cmf
2. Anmidex
3. Exemestane plus Affintor
4. A new clinical trial Biopsy-Her2 or being put on a waiting list for a current clinical trial

He asked if we been to the University of Minnesota Breast Center. We have not. He said it would not hurt to go there for their research knowledge.

Mark asked,"Don't you guys talk?"

Dr. Hoyday said, "No".

This is an example of our fragmented and broken our health care system. After voicing our concerns about hormone therapy, he felt Exemestane plus Affintor would be a great plan. It would consist of two oral pills and I would be watched closely for side effects. He did not have any new clinical trails to offer at this time, unless I want to do a biopsy. He is going to put me on the "wait-list" for up and coming clinic trails. He told us to take some time and think it over. He handed us my stack of files and shook our hands good-bye.

Five years of cancer treatment.

By the time the appointment was over it was after 5pm. Mark called Dr Laudi to leave a message about the appointment. When he called back, Mark told him about the appointment. Dr. Laudi was also disappointed that there are no new treatments. He gave is input on the treatment options we talked about. Dr. Laudi feels that Chemo would be best treatment because of the liver tumors. The new plan is to start chemo next week.

Thank you for your thoughts and prayers.

5 YEARS! (with cancer hitching a ride)

We made it to 5 years living and fighting Stage 4 Breast Cancer!

I am so very grateful for everyone who shares this journey with me. I grateful for every act of kindness given to me and my family, including prayers, thoughts, hugs, kind words, laughs, meals, laundry folding, house cleaning, feeding my kids, giving of your time and money. In America, we are told we can (and maybe should) do everything for ourselves. It took me a long, long time to learn to ask and receive help from others. You all mean the world to me. I hope for the blessing of a lifetime to share with you. Thank you!