Schöpferische Zerstörung

It has been an interesting month to say the least… on top of the complicated medical appointment logistics of dealing with simultaneous melanoma + CRC and the melanoma surgery & CRC scans themselves, were the scientific talk 3-day (!)  trip to Barcelona, the subsequent (but unrelated) beginning of our major house remodel project (to borrow a phrase from economics – schöpferische Zerstörung i.e. the cringe-worthy “creative destruction” of our home of >10 years (pictured below) to make way for the improvement process), our family move to a rental house, me being chosen to be featured in next year’s 2016 edition of the Colondar 2.0 magazine already (!) setting off a flurry of activities & the sale of an insurance agency (What?!? That is a story for another time 🙂 ) – it has been an interesting & busy month to say the least…

2015-02_Dad and Amelie House Schopferische Zerstorung

On the good side, part of the preparation for the melanoma surgery was a nice 4 week break from many of my CRC therapies, including the ones which give the most side effects!  The side effects weren’t too bad but it was still nice to feel 100% healthy again for the past month! Woo-hoo!

But now for the information I & you were all waiting for… the results of my melanoma surgery & the CRC scan.  I know many of you were starting to wonder when an update would arrive since it has been awhile since my CRC scan & my surgery – but there was a lot of uncertainty in my CRC treatment next steps until today and I wanted to wait for clarity before posting.

1.) Melanoma update: (have I mentioned that you know you are in trouble when you have to number-list your cancers for an update? Yes Grandpa you have. ha) GREAT NEWS!  They removed about 1.5 cm of tissue and it was completely CLEAN of any signs of melanoma spread – so as of now, I am considered to be “SURGICALLY CURED!”  Whew!  I’ll be closely monitored but the statistics for me ever having recurrence from this melanoma are super small. I am very thankful – to be honest, it was stretching my brain uncomfortably close to a breaking point trying to figure out how to fight a 2-front war if the results had been bad.  Big happy dance in the house when that phone call arrived!

2.) CRC CT-scan update: The CT-scan showed what we felt would be the most likely outcome. The good: Completely stable lymph nodes (they have been stable for 18 months, even before chemo – they’re just kind of hanging out & chillin’ – I call these ones “my laid back California mets”.  The even better: Still no new spots/spread!  The not so good (but expected): my lung mets have continued to grow albeit very slowly (and they are still quite small)

3.) CRC Treatment Plan update: This is where things got tricky and the reason behind the blog update delay.  Obviously my current “light chemo” isn’t stopping the lung spots, so a treatment change is needed.  The options we primarily considered included 1.) heavier chemo (with major tox side effects) – e.g. FOLFOXIRI + Bevacizumab vs. 2.) EGFR inhibitor therapy vs. 3.) a clinical trial.  As of last Thursday, we and my doctor weighed the various pros and cons of the potential options and we were all comfortable with me joining an EGFR inhibitor + immunotherapy clinical trial as my next treatment, with a pre-trial screen set for today.

SCREECH………………………………………………………………

That is the sound of my (cured) melanoma “theoretical repercussion worries” becoming reality today.  During the pre-trial screen, it was realized that the trial excludes participants who have had a second (non-CRC) cancer diagnosis within the past 5 years.  Scientifically this makes sense.  Cancer drug trials are usually focused on a particular type of cancer.  So as they track your response (or lack of response) to a trial drug – they want to know that the “spots” they see growing or shrinking on a CT-scan really are CRC and not some other cancer. Scientifically it makes a lot of sense.  As a patient, it sucks.

So what does this mean? Unfortunately, many trials have this exclusion but fortunately not all!  In other words, it will simply limit my trial choices moving forward.  Unfortunately, it looks like I am ineligible for all of the current “low side effect CRC trials” in San Diego I am interested in… so for now I will be stopping chemo and switching to an EGFR inhibitor called cetuximab. This will continue my strategy of preserving my perfect quality of life (I honestly feel great! Next team triathlon in May?) and delaying harsher chemo if/until  it is needed.

I am very thankful that my tumors are so small & slow growing to allow me that privilege of being able to try various low side effect treatment strategies without pulling out the “big chemo guns” at this time!

In the background, my oncologist is working overtime to try to find “creative” ways to get me access to clinical trial drugs of interest and I assure you I am working very hard on that project too 😉  I may write a post about EGFR inhibitors in the future but in general their side effect profile is much nicer than traditional chemotherapy.  The main side effect is a reddish rash – so I may be looking a bit like a sunburned teenager for a while 🙂  ha.

The ironies keep stacking up… but my Faith and optimism continues. I get diagnosed on the exact same day that one of my projects is being presented at the 2012 ASCO National Meeting…. I’m an oncology drug inventor who now isn’t allowed to enter many oncology drug clinical trials…  I’ve done research in the EGFR field and I’m now taking an EGFR inhibitor for my own therapy… I continue to have to have Faith that there is a guiding reason behind all of these amazing quirks of fate.  Yes – I’ll be honest, today was disappointing.  But I’m a big believer that it “just wasn’t meant to be”.  So it is time to move on and believe that perhaps I’ll end up on a path to a more effective therapy via not joining today’s trial.  A hero named Belle in the CRC community liked to say “Don’t Retreat – Reload!”.  Like houses, sometimes even the best-laid plans end up destroyed in order to build the path to better ones.  Schöpferische Zerstörung.

16 Comments on “Schöpferische Zerstörung

  1. Great news on the melanoma cure, and sucky news on the consequences of getting it in the first place. Your wonderful attitude will help you wade through the rivers of irony.

    And cetuximab isn’t too bad at all. Best of luck

    Like

    • “Wading through the rivers of irony” – I like that Chris, you have a great way with words. Best of luck to you too my friend.

      Like

  2. Thanks for the update, Tom. Keeping you in our prayers as always. Can’t wait to see the next phase on your house 🙂

    Like

  3. Putting Amelie to work on the renovation will save you a decent amount of $ I’m sure, good thinking!!! I assume Eleni will be handling the electrical work, then? Can’t wait to see the finished pics!!

    Liked by 1 person

  4. Pingback: HAPPY JUNE 4th! (v. 3.0) | AdventuresInLivingTerminallyOptimistic

  5. I am so glad that Chris had positive influence on some many people, especially the cancer community. Thanks for your posting. Love to all; Chris’s mother, Dot

    Liked by 1 person

    • Chris really did have a tremendous positive influence on the CRC community, I was glad I could pay tribute to him in some small way… Thank you for the comment & take care Dot, -Tom

      Like

  6. Pingback: It’s a Marathon Not a Sprint | AdventuresInLivingTerminallyOptimistic

  7. Pingback: Schöpferische Zerstörung | 乐观地和绝症一=起进行人生冒险

  8. Pingback: World in My Eyes (Favorite Posts of 2015) | AdventuresInLivingTerminallyOptimistic

  9. Pingback: SCHÖPFERISCHE ZERSTÖRUNG (创造性破坏) | 乐观地和绝症一起进行人生冒险

  10. Pingback: Scientific Guardian Angels Appear: Vol. 2 | AdventuresInLivingTerminallyOptimistic

  11. Pingback: A FOLFIRI Team Triathlon to Crowdfund a CRC Clinical Trial | AdventuresInLivingTerminallyOptimistic

  12. Pingback: My Very Own City of Hope: MSS-CRC Clinical Trial #1 | AdventuresInLivingTerminallyOptimistic

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Avonturen_in_het_ongeneeslijk_optimistisch_leven

Scroll naar beneden langs de grote bomen:-)

My Cancered Life

Relentlessly Attacking Cancer Through Fitness, Family, Advocacy, and Laughter

Dobrodružství_terminálně_optimistického_života

Přejděte dolů kolem velkých stromů :-)

Aventuras_Viviendo_Terminalmente_y_Optimistamente

Más allá de los grandes árboles :-)

乐观地和绝症一起进行人生冒险

向下拖动滚动条看看大树底下 :-)

Приключения_безнадежного_оптимиста

Пролистайте вниз мимо больших деревьев :-)

Cancer Riot

Scroll Down Past the Big Trees :-)

SugarCone Biotech

Research and Development - Analysis, Consulting, Investment

Fightin 4 Blue.org

Colorectal Cancer Awareness

Tami Boehmer | Miracle Survivors

Just another WordPress.com site

Adventures in Spiritual Living

Riding the spiritual waves of everyday life

life and breath: outliving lung cancer

for the terminally optimistic

%d bloggers like this: