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What a long strange trip the past month and a half has been as I started my first immunotherapy treatment (atezolizumab + FOLFIRI + bevacizumab), as I reported in my earlier post “Positive Sign or False Hope? Time Will Tell…”.  The first two infusions went by pretty well – their side main effects (tumor site pain, fevers, fatigue) perhaps signs of successful immune activation! Then something happened After writing that post, the… Read More

So this is what GOING OFF-ROADING – EXPERIMENTAL TREATMENT STRATEGY STYLE feels like… What an interesting couple of weeks I have had since my last medical update (link above)!  “Interesting” is a well… an interesting word isn’t it?  It doesn’t have positive or negative connotations… it is just what it is… interesting. Some sort of brew of the unexpected that can be good or bad depending on the circumstance. My brew was either… Read More

Yes, it is time for another medical update! It is funny… the original intent of this blog (before I published the first post) was for it to be a vehicle to give medical updates to friends and family.  Starting with the first post “TAKING THE LATEST TREATMENT PLUNGE” I decided to make the scope of the blog much broader and deeper than that – which I believe happened – to an AMAZING degree!… Read More

All I could think to myself was “WOW”!  Similar to my Charlie Rose Show experience last March, this email came out of the blue as well… I received an email from Fight CRC a few weeks ago that Newsweek Magazine wanted to do a story about our Late Stage MSS-CRC Trial Finder and my advocacy. I was floored! To have that level of readership (which will include many CRC patients, caregivers, family members and friends)… Read More

First of all, sorry that this post has been delayed so much!  Last year I was able to write up my ASCO post with almost no delay but unfortunately this year my personal medical situation intruded (a little thing called trying to save my life with the June 1st Y90-SIRT)!  So here it finally is, delayed by about a month! What do I think was the biggest MSS colorectal cancer presentation and clinical… Read More

I wanted to give an update – both in how things have been going and also what my next plans are (hint: I have to arrive at the hospital for a surgical biopsy at 6:30 AM today!) Looking Backward Compared to last winter and spring (OK, compared to last month!), I find it hard to accurately describe how much things have turned around, how good things are going relative to before and… Read More

The title says it all, although it should also be noted that this approval also covers other/all MSI-high cancers, not just MSI-HIGH CRC!.  Links below.  The first time a checkpoint immunotherpy (pembrolizumab (Keytruda)) is a PD1 inhibitor Immunotherapy) has been approved based upon a genetic marker (in this case MSI-Status – something I first described here back in 2015! (Stephen profiled in that 2015 article continues to do awesome by the way with no… Read More

ASCO-2017 abstracts were released yesterday and there is one study that really stood out for MSS-CRC: Abstract 3002.  The study is for the ongoing clinical trial #NCT02650713 which is testing an exploratory CEA x CD3 bifunctional protein immunotherapy called “RO6958688” both with & without the addition of the PDL1 inhibitor Atezolizumab (Tecentriq). I have been tracking this clinical trial for months as I have steadily seen multiple anecdotal accounts of successful activity appear on… Read More

>1,000 Hits… my mind was blown away.  My cancer had returned and I was now diagnosed recurrent Stage IV.  I knew at that moment that standard of care therapies would only buy me so much time – I would need to have Clinical Trials in my treatment plan.  Being a planner, I immediately started to search the main database of clinical trials, http://www.clinicaltrials.gov to see what trials were possible, to start making… Read More

“Ironic” – as shown in the above pictured definition of “Ironic” from the Urban Dictionary – is a word that is often misused in contemporary life but when it comes to my “Cancer Life”, I think it is perfect.  I do not think my Cancer Life is just “coincidental”…. And I certainly do NOT think my cancer life is “tragic”!  But has it been, from the very beginning, a series of events… Read More

Cover photo by Ariana Drehsler for STAT.  Source: STAT News – here. As you know I work with MANY different CRC organizations – The WunderGlo Foundation, Fight Colorectal Cancer, COLONTOWN, The Colon Club, the Colon Cancer Alliance etc – all are doing many great advocacy (and in the case of WunderGlo a purely CURE RESEARCH focus) projects in their own way. Because I work for so many – fundraising would get very… Read More

Both psychologically and practically it is interesting how a cancer patient’s attitude and approach to chemotherapy changes over the course of a “Cancer Career”.  That is a phrase that just popped into my mind recently… “Cancer Career”.  I am fast approaching the 5-year anniversary of my metastatic cancer diagnosis (June 4, 2012).  5 years, starting when I was 40 years old.  Considering that my adult life started when I was 22 (I… Read More

Well… a blog post I certainly don’t want to write and I did not plan on writing… I was told to never bury the lead of a story – so here it is: My oncolytic virus clinical trial plans have been canceled (hopefully just postponed). What? How?? Why??? I assure you the decision was not made lightly but it is also a decision I am 100% comfortable was the correct one to… Read More

Just a short IMMUNOTHERAPY CLINICAL TRIAL update post today- The phone call just came in last night: The Clinical Trial Countdown Clock has officially started! As a reminder, here is the Phase 1b trial I will be participating in: “Phase I Study of Enadenotucirev and PD-1 Inhibitor in Subjects With Metastatic or Advanced Epithelial Tumors (SPICE)” (NCT02636036) The pre-trial process at City of Hope Cancer Center up in LA will start on Feb…. Read More

An incredibly intense series of events have been happening to me medically over the past month – life changing events for both me and my family.  Things were happening so quickly, I haven’t been able to provide updates here – but today I’ll change that.  Today, you will hear what has been going on.   It was a rough month – for both me and my entire family – but I am honestly… Read More

I feel so extraordinary, Something’s got a hold on me I get this feeling I’m in motion, A sudden sense of liberty… I used to think that the day would never come, I’d see delight in the shade of the morning sun “In many ways 2015 was the most incredible year of my life.  Over 3 years into a currently incurable Stage IV colon cancer diagnosis, that phrase says a lot.” That… Read More

This is a blog post I had been hoping to write for a long time! The first published (today in the New England Journal of Medicine) “clinically disease free” success achieved via immunotherapy & surgery in an advanced Stage IV patient with the common “Microsatellite Stable (MSS)” subtype of colorectal cancer (CRC) – the kind of CRC that I and most CRC patients have! As of right now it is only a… Read More

SCHEDULED FOR FRIDAY (12/23) – NBC NATIONAL NIGHTLY NEWS with Lester Holt!  NBC Nightly News recently interviewed both I and a patient/caregiver couple helped by the COLONTOWN CLINIC, a project supported by the Colon Cancer Alliance.  The interview and story will air this ????? night. As many of you know, I am proud to work on numerous patient Clinical Trial advocacy efforts with a number of advocacy organizations to try to empower &… Read More

In the immortal words of our most recent Nobel Prize Laureate Bob Dylan , the times they are a changin’…  This morning I will be having my final Full Fury (FOLFIRI) chemo infusion for the foreseeable future.  A chemo cocktail that I first had the joy of encountering way back in 2012, and after restarting it, have been doing continuously (minus some #CannonballLife breaks) for the past 12 months.  Restarting FOLFIRI last… Read More

Cobimetinib  + Atezolizumab  might have grabbed all the Microsatellite Stable-Colorectal Cancer (MSS-CRC) immunotherapy headlines in 2016 but quietly in the background was a second published/presented  Phase 1 Immunotherapy Clinical Trial with preliminary signs of activity in MSS-CRC patients.  I suspect it slipped under the medical radar earlier this year because its Phase 1 Clinical Trial results and related preclinical data were published in a (albeit very good!) scientific journal (Cancer Cell) rather… Read More

Pain. I’ve been very fortunate over the past over 4 ½ years since my cancer diagnosis.  I had some pain immediately before my diagnosis from my primary tumor but ever since that surgery in June 2012, I have lived a pain-free life.  Except for an occasional cough in-between treatment regimens, zero symptoms of cancer. Sure I have chemo side effects to deal with, especially when I switched over to Full Fury (oops… Read More

As long time readers of my blog know – I have been in a quandary since I was diagnosed with (presumably cured) Stage 1 melanoma in January 2015.  That diagnosis, even though presumably cured by simple day surgery, with zero signs of recurrence ever since e.g. by monitoring with blood liquid biopsy, effectively blocked me from most colorectal cancer (CRC) clinical trials. Without clinical trials there is statistically an essentially 100% chance… Read More

Photo graphic courtesy of STAT News, Photo by James Cuevas I hear questions all the time for an update on my personalized “neoantigen” immunotherapy research project – a project I first wrote about in blog format last February. If you want to know a broader view (both historical background and current status) about our quest to cure both my own MSS-CRC & efforts to lead the way for fellow MSS colorectal cancer patients as… Read More

Hope – it is such a simple, yet complex word. A short word that is easy to explain on the base-level but it can be incredibly complex to comprehend all the facets in which it can impact the human psyche. Hope can be rational or irrational – the human brain has trouble distinguishing.  Are we paralyzed in fear that we will not be alive for the next major Holiday?  No – we… Read More

I had my post-summer-chemo-break CT-scan on Wednesday.  Regrets & worry started to try to enter my consciousness.  They were unwelcome invaders and to be honest, rarely seen or felt in my psyche now days.  But here they were – as I laid on the CT-scan table getting scanned…. Laying there completely alone, unlike the constant buzz of comradery that had surrounded me throughout my summer. A scan to quantify how much my… Read More

The CT-guided lung biopsy mentioned in my previous post was completed today at the University of Michigan without complications! It is intended to provide both DNA and RNA sequencing data for my personalized immunotherapy project – so I was bouncing with excitement when I entered the CT-scanning room this morning. I was surprised on the table to find out I would be wide awake for the entire procedure.  That + starting to picture the… Read More

What do you do when two fully qualified major medical centers give you opposite medical advice?  What do you do when the decision impacts your personal colorectal cancer (CRC) immunotherapy research and shot at a cure?  Today, I want to provide a medical update related to my personalized immunotherapy research project but while doing that, also discuss a major issue which impacts many cancer patients, myself included, conflicting medical advice. ‘Ask your… Read More

This post is primarily for Stage IV colorectal (CRC) survivor and caregiver readers (and indirectly for Stage IV lung cancer readers as well, see below!): An interview with a Dr. Johanna Bendell, a Principal Investigator of the MSS-CRC immunotherapy breakthrough clinical trial which combined a MEK inhibitor (Cobimetinib) with a PD-L1 inhibitor (Atezolizumab).  This clinical trial data was presented at ASCO-2016 by Dr. Bendell, a clinical trial expert. I have never done four posts… Read More

I just wanted to give a brief personal medical update and my related summer plans! With the exception of my diagnosis summer (2012) when potentially curative chemo was given ASAP, I have always had the “goal” (when medically possible) to take summers off from treatment.  Even though I am terminally optimistic, I am also realistic… part of Stage IV life is thinking through the memories you are generating for your kids –… Read More

To complete the trilogy of posts on the major new preliminary MSS Colorectal Cancer (CRC) immunotherapy results released today on the combination therapy of the MEK inhibitor cobimetinib + the PDL1 inhibitor atezolizumab, I’m excited to share the data released at ASCO-2016 this morning!  Both drugs are already FDA approved for other types of cancer – this was the first examination of their combined use against MSS-CRC. When dosed alone, neither MEK… Read More

I usually only do this kind of “real-time trial news” post on my Facebook or Twitter accounts but this is such BIG news, I wanted to publish here as well to spread the word to the colorectal cancer (CRC) patient & caregiver portion of my Blog readership. A PHASE 3 Immunotherapy Clinical Trial was registered today – including for MSS-CRC, the major type of CRC (95% of Stage IV) and the type… Read More

As I promised in my last post “Czech Please!” it is now ASCO season, so be prepared for a science post…  This one is a little hardcore – but bear with me, I tried to keep unessential scientific details to a minimum and as the title indicates (major spoiler alert!), I think it has a very important message! One, with my eyes misting up a bit, I have been yearning to write… Read More

A very brief medical update! Being hit by a FOLFIRI chemo infusion today only 48 hours after running the team triathlon truly feels bizarre… But that is one of the crazy aspects of Stage IV life! You swing from doing the absolutely “normal” (commuting to work, dinner out with the family) to being knocked out in an infusion chair and crawling into bed “bowl handy” as soon as you get home afterwards…… Read More

Surfing the AACR Waves of Science What a day.  I just woke up from a drug-induced nap that wasn’t particularly long but it was deep.  For the second FOLFIRI chemo infusion in a row, I fell into such a deep sleep when I got home, that when I woke up it felt like I had slept for many hours.  Looking over at the clock, it said 4:37.  That felt about right –… Read More

It’s hard to believe that it has already been almost 12 months since I last ran a UCSD-Moores Cancer Center Team Triathlon, which I wrote about last year in my post THE ULTIMATE TEAM SPORT: “A big part of being a cancer patient is trying your hardest to not give up in the face of adversity.  In that way it is very similar to endurance sports.  This is what makes the Moores… Read More

You know those moments in life when something so unexpected, so exhilarating & so meaningful (all wrapped up in one) happens – that each time you think of it you get the chills all over again? I had one of those moments a few days ago in the basement of the Congressional Rayburn House Office Building.  It was such a special meeting, even Katie Couric, a big CRC and cancer advocate, tweeted about… Read More

To begin with, my CT scan was good – my tumors are shrinking from the FOLFIRI + Avastin chemotherapy I am currently taking!  I have had a 4 week break – the side effects go away after 3 weeks, so I even recently snuck in a 10k run! 🙂 I will be continuing to take chemo biweekly for now.  But that is a battle win (which I am very happy for!!) –… Read More

“Each patient’s cancer is unique and personalized – why shouldn’t their treatment be too?” My latest The Currently Incurable Scientist column for Fight Colorectal Cancer has published and it ended with the above quote.  The column discusses an area of cutting edge oncology research that I find absolutely fascinating: a type of experimental immunotherapy called a “personalized cancer vaccine”.  I already mentioned personalized immunotherapies briefly in my post “My New Year’s Vision of… Read More

To start off year #2 of my blog and to kick off the New Year, instead of looking back (I did that with my recent post “World in My Eyes (Favorite Posts of 2015”) – I decided to look forward. And look forward in a positive but also provocative and perhaps controversial way. Making bold predictions in science is often considered a fool’s errand.  Science is all about exploring the unknown, attempting… Read More

In many ways 2015 was the most incredible year of my life. Over 3 years into a currently incurable Stage IV colon cancer diagnosis, that phrase says a lot.  Of course, the most incredible moments in my life were my kids’ births and my marriage day.  But in terms of almost continuous meaningful things happening….. as a year, 2015 took the cake. I had ZERO guess that any of this was coming… Read More

As I announced in my most recent medical update post “It’s a Marathon Not a Sprint”, this week I started the chemotherapy cocktail FOLFIRI  + the angiogenesis inhibitor Avastin (bevacizumab). I wanted to update you on how the return to chemo went. I won’t sugarcoat this decision nor the experience. I believe my writing, fellow survivors & you all deserve brutal honesty – but it is, as always, Hope filled.  Hope is… Read More

My most recent The Currently Incurable Scientist column published this week on the Fight Colorectal Cancer  website.  It explains in layman’s terms the mechanism of action & the very unique and promising preliminary clinical profile of an experimental drug called “RRx-001” in early clinical trials including a randomized Phase 2 trial (NCT02096354) for metastatic colorectal cancer (CRC). As usual, I wanted to use my personal blog not to simply repeat the information in… Read More

I don’t normally write blog posts so close together but I know everyone has been curious what my new treatment plan would be after I announced 3 weeks ago that I had become resistant to Erbitux.  Since then, there has been radio silence in terms of my next step treatment plan but I assure you things have been very active in the background… I just couldn’t post an update until plans became clear…. Read More

I wanted to expand the normal scope of my personal blog in today’s post. Not just for the sake of expansion but importantly because I believe strongly in today’s topic!  After a bit of introductory science, I will be profiling two fellow CRC patients currently in immunotherapy clinical trials – to illustrate the preliminary signs of immunotherapy success of checkpoint PD-1 pathway inhibition in a significant percentage of patients with MSI-high CRC…. Read More

The September edition of my monthly The Currently Incurable Scientist column has published on the Fight Colorectal Cancer website.  It briefly discusses in layman’s terms the profound roles chronic inflammation is believed to play in cancer patients, including: Direct impacts on facilitating tumor growth & spread Impacts on helping tumors evade and hide from the immune system making the tumor immunologically “cold” Systemic effects on the patient’s body including e.g. loss of… Read More

Some posts are closer to my heart than others.  This one is very close – it shows what made me the patient-scientist-advocate I am today… and it comes down to Mom. My Mom and I were abnormally close – so much so, I could have been called a “Mamma’s Boy” in my younger years.  In fact I was called that (on more than one occasion) but it didn’t bother me because I… Read More

For readers interested in “the science” of current & potential future CRC treatments – my latest monthly column of The Currently Incurable Scientist has been published on the Fight Colorectal Cancer website.  This month’s installment is called “The Future of anti-EGFR Therapy?” Similar to last month’s column, it is a 2-parter.  The first part describes how current anti-EGFR therapies work in the treatment of CRC.  The second part discusses two example clinical trials testing next… Read More

The first “science” column of my new patient advocacy writing project “The Currently Incurable Scientist” on the Fight Colorectal Cancer website has been published! As I discussed in the last post – I am really looking forward to using this new monthly column to fulfill one of the original goals for my personal blog: to discuss the science behind new treatment strategies approaching or in clinical trials – to help shed light on the world… Read More

There is no new medical news to report – which in the case of someone with Stage IV cancer is a good thing!  I’m continuing my weekly Erbitux infusions (with appropriate Mad scientist amendments 😉 ), the side effects are manageable,  my new runathon for the Colon Club is off to a great start and I continue to feel great!  The next CT scan to confirm things are continuing to go well is… Read More

A DVR reminder of a film I have mentioned before: The incredible new Ken Burns “Cancer – the Emperor of All Maladies” PBS mini-series will air next week on Mon-Wed (4/30-5/1), I highly recommend to set your DVR’s and tell Family & friends, especially those impacted by cancer! I had the privilege of attending an advance screening a few weeks ago.  They only showed a 45 minute excerpt of the 3 episode… Read More

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