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You don’t know how much you will miss something until it is taken away from you.  Two weeks ago something was taken away from me: my ability to walk without assistance. It all happened without warning.  I was watching TV with the family on a Saturday, preparing for the next 3 zaps of ration treatment. I had so far had two. On Monday I was supposed to start the final three and… Read More

Balancing the need to conserve energy and it being unfair for the entire Facebook & Twitter social media Universes to know the latest on me while you don’t, I am simply cutting & pasting the latest medical news on me from my Facebook post from last week (Twitter also just got a copy & pasted Facebook post). As a reminder: I keep Facebook in constant up to the moment update on my… Read More

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

This past week we welcomed a new member to the family – Blink! Like many good things in life, he chanced into our life without much warning.  I went out to breakfast with friends visiting from my Buffalo days and when I got home, Veronica said “I think I found a place we can adopt a dog same day!” We had been searching for a dog for a couple months – a… 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

This week is one of those weeks where a bunch of important things are happening, across a wide range of my life!  I was trying to think of how to organize into a blog post – easier said than done, so I decided to just go chronological — a week in the Life of Tom!  The picture above was technically from the previous week but I had to show it – a… 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

I went and got a haircut this week.  No that was not meant to be the single most boring start to a blog post in the history of cancer blogging – it was meant to make a point. I was excited to go get a haircut!  Why?  It has been months since my last one.  I was largely bedridden and 100% housebound (aside from medical appointments) for a couple of months last… 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

Not with a bang but with a whimper… that is how my cancerversary – my fifth cancerversary – snuck up on me this year. In previous years, I started thinking about it a few weeks in advance.  The feel of late spring in San Diego & the end of the school year may forever be seared into my psyche as the time of year when I heard those fateful words “Your husband… Read More

I wanted to write a quick post update, this one to report on how my “Selective Internal Radiation Therapy (Y90-SIRT)” procedure done on the right lobe of my liver went yesterday. We won’t know efficacy results for a while (so that is still very much in finger crossing, hoping & praying territory!) but in terms of the procedure and side effects it was a very successful day! The day started out with a few… Read More

Well the day is finally just about here!  After a longer than wished for wait over the course of May, tomorrow I go in for my first liver-focused therapy – my first attack on the liver front of the war! At 10:00 AM tomorrow morning I’ll be checking in at the UCSD Hillcrest hospital to treat the right lobe of my liver with “Selective Internal Radiation Therapy (Y90-SIRT)” a fascinating medical technology… 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

What a week I had last week!  Taken overall it was a GREAT week.  It was extremely hectic and not without some blemishes towards the end, but overall… it was a great week.  The type of week that doesn’t happen often enough in the lives of advanced stage, Stage IV cancer patients (and associates caregivers and families) once the disease enters into late stage. What made it so great?  While I had… 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

A brief update… and an explanation why I have been slow to write update posts recently… My disease has really taken off into a much more aggressive form with a significant increase in symptoms. It has become pretty rough on both my family & me… I have been working 24/7 with both doctors and scientists on medical options since my last medical update and I am beyond excited to say that I… 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

There is something deeply visceral about your brain… It is the center of thought… It is the center of your being… it is the center of who you are… All of those aspects of the brain came crashing down around me late last week.  I had gotten a PET-CT scan to see how my disease was responding to my current therapy and there was a surprise. A bad surprise.  There was a bright… 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

Wow. What an incredible week it has been… I am tearing up now just thinking about it as I fly home from New York City (NYC) to my home and my family in San Diego. A lot of people have been wondering how I have been doing since the last medical update (In Case of Emergency Break Glass).  It is hard to believe that it has been almost a month since that… Read More

March 1st is the beginning of Colorectal Cancer Awareness month. I chose to commemorate it in this way – in the hopes that these pictures will bring awareness of the EXPLOSION in early-onset CRC cases. If you have GI symptoms with more common causes ruled out by your PCP – NO MATTER WHAT YOUR AGE – demand a colonoscopy! If I had been faster, I might not be Stage IV right now…. 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

As readers of this blog know, physically I have been going through a rough patch the past 6 weeks or so.  Thankfully, something that is now changing! The sudden ramp up of pain right before Christmas that I have written about which impacted me and my entire family physically, mentally and emotionally, the recent loss of a close friend  and the endurance of a round of radiotherapy the past three weeks, which was… Read More

What invigorates me to fight the way I do?  Well beyond basic self-preservation for both me and for my family – it is the sheer amount of needless loss I see on a frequent basis.  Losses in the world of my fellow cancer patients, including close friends and including on some days, very special friends. A very special friend of mine died of early-onset CRC yesterday. Alex was only 26, diagnosed 15… 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 had hoped to start 2017 out with a full personal update blog post but there are so many intertwined parts currently in motion (and things currently unclear being clarified!), that a full post will have to wait for just a bit longer!  It has been a very hectic & significant past few weeks and I think January will follow suit.  As always, follow my (public) Facebook feed if you want more… 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

When you are first diagnosed with cancer, many things stream through your mind at light speed.  Being there for your kids, impending major changes to lifestyle and life plans, and right up there in that top tier of thoughts are worries about your employment and workplace. Before I drill down to my specifics, these are HUGE concerns impacting Stage IV patients overall, adding yet additional layers of stress on top of their… 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

This is a lengthy science post I have been debating whether to write for over a year.  Many fellow patients have been asking me to write it but I have hesitated.  Why debated? Why hesitated? At the root of ANY science post I write, I have to believe in my heart that the possibility of harm is vastly outweighed by the possibility of good that could come about by me sharing my… 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

My latest column for the Philadelphia Inquirer newspaper published today.  I continue to be very thankful that they have given me an outlet for both sharing aspects of Stage IV cancer life to the general public as well as for me to publish creative writing (which I LOVE doing, I seriously look forward to writing these columns about every 2 weeks!).  BTW I now has an updated page on my blog with all my Philadelphia… 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

Friends. Family. Brothers. Sisters. Those words get used a lot in my current Stage IV life and they’re not necessarily referring to the people you would expect.  They’re referring to fellow cancer patients and survivors, often especially those also with Stage IV disease. There is a special bond between fellow cancer patients and survivors that is the deepest bond outside of nuclear family I have ever seen. In general, friends are brought… 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

Last year I was lucky enough to be chosen as a Featured Survivor in the annual Colondar 2.0 magazine  that The Colon Club produces each year. As a part of being chosen, you are invited to attend a “Colon Camp” retreat in rural Tennessee.  Last year I wrote in the post “ELEVEN NEW SISTERS AND BROTHERS (AND MANY MORE COUSINS)”, that going to Colon Camp last June was an amazing life-changing experience for me. … Read More

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