Friday, July 1, 2016

Progression Free Survival-FAQ's

Progression Free Survival!!!!
I just got results back from my most recent CT scan.
My cancer continues to be stabilized and minimized!!!!
The fact is.... my measurable disease shrank another 1.2 mm since my last CT scan.
Dr. Eaton continues to be pleased with the results, we are thrilled.
This CT/Scan and Chemo Round #19 marks I full year in chemotherapy.
It has been a hard year and we have had to stay sharp, combativeness has been the order of the day, everyday....  It takes a toll.  We are looking forward to soaking in these recent results and cutting loose to do some living this summer.  Thank you to all of our supporters that have gotten us to this place, it feels good to be in front of this thing.  Take a deep Breathe.....

Frequently Asked Questions(FAQs)
I get asked a lot of questions about my disease.
I thought I would hit a few of them here....

How many more rounds of Chemo do you have?
My chemotherapy schedule is indefinite. 
I will continue to get the current treatment until it is no longer effective in keeping the cancer at bay. As of June 23rd I have had 19 rounds of chemotherapy and I have been in treatment for 364 days, basically 1 year now.  If/When the current line of treatment stops working I have a second line plan all lined up, planning ahead as to not be put into "crisis" mode again.

What does Stage 4 Metastatic Cancer mean?
It means that the cancer originated in an organ and the cells have spread to other parts of the body and set up shop.  In my case origin was Lungs, and the cancer spread to my lymph nodes and my bones.  
It is because of this, that my only treatment option is chemo. 
Chemo can approach it systemically- radiation nor surgery are options. 
Think about applying weed killer to your lawn vs just pulling weeds.
The weeds you pull (radiation/surgery) will likely grow back, but the area you put the weed killer (chemotherapy) should remain weed free.  Get it?

What is Remission and when will you be there?
It is a term that gets thrown around a lot.
In layman's terms, people interpret it as that the cancer has gone away after treatment.
It is NOT a term my oncologist uses; my cancer is considered un-curable.
Therefore, the expectation is that I will never be "in remission".. 
But miracles happen and I haven't discounted that.

What is No Evidence of Disease(NED)?
It means that with diagnostic tests you appear to be cancer free: there is no measurable/observable cancer. Typically, this is associated with still being in treatment.  Because of the complex nature with the spread to my lymph nodes, my Dr. Eaton says I am close but will probably never be true NED.
But...per my last results, I am ever so close, and still strive for it.

What is Progression Free Survival (PFS)?
THIS is where I am.  After 4 rounds of super burly carbon based chemo last summer and 15 more rounds of "maintenance", my tumors have shrunk. 
They are minimized and stabilized.
There has been no disease progression since I started chemo exactly 1 year ago.
This is the goal with the management of my disease, and right now it is going quite well.

What are the side effects of chemotherapy?
During the first 4 rounds it was extreme fatigue, nausea, weakness, near fainting, and anemia.  I also was having cardiac arrhythmias that were partially cancer related and partially side effects.  On my current regime it is low grade fatigue, nausea, and loss of appetite.  Just generally icky feeling.  This lasts 4-5 days, by day 5, I am ready to go back to work, by day 6 there seems to be a switch flipped and I feel almost normal.

Why haven't you lost your hair?
Chemotherapy has become much more specialized and targeted that in many cases like mine, hair loss does not happen.  Chemo attacks fast growing cells like cancer, it the past it didn't discriminate and hair loss happened.

Why don't you look sick? 
Part because of my miraculous response to treatment, part because of the specialized nature of my chemo, part because at baseline I was a pretty healthy fit dude, and maybe mostly because I am a strong stubborn son of a bitch with a pretty stout mindset at fighting this.

Fun Stuff:

I recently was asked to be part of a panel by the Bonnie J Addario Lung Cancer Foundation.
I flew down to San Francisco and met some great people while sharing my story.
Here is the presentation, fast forward to minute 48 to see my interview.
PT perspective panel

Bella and I got to attend a Copa Americana match between the USA and Ecuador.
It was one of the most exciting matches I have ever seen, and USA came away with the Victory!!!!
Go Team USA!!!

For Fathers day we went out the the Olympic Peninsula and hiked Lake Lena.
What a great day out for the family, followed up with an awesome Fathers Day dinner.

Lena Lake

All of the brown girls are out of school for the year.
Phoebe has attended Black Lake Elementary from K-6 and will moving on to TMS for 7th grade.
We celebrated her moving on to middle school at the 6th grade tea.
Bella will be JR this coming year at Black Hills HS, and Lilly is gonna be a 5th grader at BLE.
6th Grade Tea

Thanks for checking in and for the continued support.

I am a warrior.
I am a thrivor.
I am the exception.
I choose the miracle.

Prayer requests:
Complete healing from metastatic adenocarinoma.
Peace, rest, and rejuvenation for my family.
Good sleep.