December, 2014

The Warning Sign. While being checked for a possible cancer, something showed up on the scan which indicated a shadow  “over there”  and probably should be checked out.  I thought over medicine.  Then two hours later I had massive pain.  I thought I was a hypochondriac. because I read the report and it mentioned a possible stone.  Had no symptoms before then.

March to August , 2015

Port &  Chemo Time.  Medi-Port was placed, and time for 6 months of FOLFOX - first session on my wife’s birthday..  I had one treatment without the Oxaliplatin, 8 with it before neuropathy got to be too much.  It was dropped and I completed 12 cycles.  One suspect spot in my lungs looked like it shrunk during the FOLFOX treatment, but it was too small to know for sure.

August to September, 2016

And It Is Back.  I guess it really never left.  As I was  continuing to be monitored for a probable other cancer (which is how this all started), my blood work indicated a problem.  So we did a scan.  A met in the lungs.  According to the surgeon (who later on operated on RBG in December, 2018, in my 6 degrees of separation moment) it could be - in the order of the best to worst outcomes - (a) benign, (b) a new cancer in the lungs or (c) a met to the lungs.  Snake eyes, a met.  I had a section of my left lung removed.

October, 2017

And It Is Back.  Again. I had a scan in mid-October.  In my mind this was the scan that was going to show I was in remission. The lung met was there from the beginning.  So I was counting from there.  This was over two years.  80-85% of the recurrences happen in two years.  I opened up the report.  And there it was.  In my lymph nodes and lungs.  I did the Dr. Google thing.  The lymph node surgery would be a tough surgery and recovery.  But when I met my oncologist, she told me no surgery.  The risk was too high I would be paralyzed or bleed out    I then said I guess it was time to start chemo  - another no.  Usually chemo works for a year before it stops being effective.  My cancer was not causing any symptoms.  I had some time before having to go on chemo.  Which would buy me more time on the other end when this chemo became ineffective and perhaps another  breakthrough in cancer treatment would be found.

December, 2017

No reprieve. I had a scan the end of December.  I was hoping that perhaps the October scan was not 100% conclusive.  But it was.  When I read the report, there was not doubt.  So then and there, I signed up to do my first Triathlon in March, 2018.

May  to August 2018

Immunotherapy trial. From May through August I had various biopsies and treatments in an immunotherapy trial.   It interfered with triathlon training a bit.  But, despite that, in July I decided to do an Ironman 70.3.  As a relay.  In October on the anniversary of the day I opened up the report that my cancer was back for the third time.  But I started having cramps in my legs in July.  And then some minor back pain.  I thought old man working out too much.  I was wrong.  The August, 2018 scan showed that the immunotherapy trial was not working.  That there was cancer “bloom” and it was throughout my lungs.  And in my spine.  It was time for radiation and then back to chemotherapy.  Pretty much forever or until it stopped working.  I realized it would be awhile before I would ever be able to do an Ironman 70.3.  So throwing caution to the wind and having only 8 weeks of training out of a 12 week program I was using for the October relay 70.3, I decided to enter the Atlantic City Ironman 70.3

September, 2018

Going For It. On September 16, 2018 I completed the Philadelphia Rock and Roll 1/2 Marathon.  Something that I never would have dreamed of doing and what I was told I should not do if I was going to try to do a 70.3 the next week .  On September 23, 2018, I completed the Ironman 70.3 before the cut-off time.  Something I never would have dreamed have doing and was told was going to be pretty much impossible for me to do so quickly after starting training and with my limited training..  On September 30, 2018 I completed the Tunnel To Towers Run.   On October 13, 2018 I ran my fastest 5K after completing radiation the week before for the tumor in my spine.  Two days later I was back on chemo.  More details later, but it messed up training for a bit.

April , 2019

Acclimating. I am starting to get used to the new routine of chemotherapy.  Not a perfect scenario, but have been working out.  And completed two sprint relays.  Though I would never argue with Ricky Bobby, a couple of second place finishes does not feel like last.   iTRI4aCure’s 501(c)(3) status has come through and this website is starting to be worked on as of April 30.  The others areas will be built out a bit more in the next few weeks, including more information of what is happening.

July , 2019

More races. Another relay in the books in June.  Signed up to do my first solo triathlon of the year in August.  And signed up for another Ironman 70.3  If I am healthy enough to do it, I wanted to make sure I had a spot.

August , 2019

Climbed Back On The Horse   Completed a super sprint and a sprint triathlon, both solo, the first triathlons I have done since Ironman 70.3 Atlantic City.  Not easy, but very happy to have gotten back to doing swim/bike/run.   Still will do relays just because I enjoy them.

September- October , 2019

Keeping it Going  Did a super sprint, Olympic relay and then North Carolina 70.3.  Wound up doing 69.20 miles of a 70.3 mile race due to the extra on the bike course.  Was ahead of pace 40 miles into the bike ride, then headwinds slowed me down.  Wound up at T2.  Did 10.1 miles of the run before shut down.  Allowed us to go through the chute and got a medal and a hat.  With everything going on, I do not feel like I failed and was just slightly disappointed.  Getting back on chemo and getting used to all of the things (plus kidney stone in July, Plantar issue for three months) kept me a bit off of where I wanted to be.  Signed up for Galveston 70.3 in 2020.

November , 2019

Remix    Did the Rock and Roll Las Vegas remix.  5K then 1/2 Marathon the next day.  Since I started triathlon training, I have completed 3 1/2 marathons (two solo, one as part of a 70.3)  No way in mu wildest dreams did I think I would be able to do a 1/2 marathon 2 years ago.  Put in for NYC Marathon lottery.

December , 2019

Time To Relax    I planned on doing one more sprint mid-December, but wiser people said take a rest and heal up a bit more.  

Stats for 2019

19 rounds of chemo

3 Sprint Triathlon Relays

3 Sprint Triathlons Solo

1 Olympic Triathlon Relay

3 5K.

1 7.6K

1 1/2 Marathon

1 70.3 (Finished 69.2 miles due to extended bike, pulled from course 10.1 miles into run)

Looks like not a bad idea to #embracetheslow

December 11 , 2019

Another Shoe Drops   I had a scan December 9. Today I got the results.  The chemotherapy has been confirmed to stop working.  So no more chemotherapy for now.  Next chemo options are worse and not as effective, so  looking at trials again while I am still healthy..  Taking a short vacation, first real one since I got diagnosed, then coming back to work as hard as I can on triathlon training to keep going.  I have avoided being on a couch on oxygen so far and keeping fingers crossed I can kept going.

February 24 , 2020

Still training   I had a bad couple of days where I felt tired.  And did not train.  But got into the pool today.  And did my longest amount of yards since I began training.  I decided not to go to Las Olas to reduce some stress on my body.  A bit disappointed, but I think it is the right decision.  Still trying to aim for Galveston 70.3    Just need to try to get my running better still.   Being off chemotherapy really is nice, but for the obvious that it is not a great situation.

August 7, 2020

A Win   COVID shut down trials.  One of the trial doctors and my  oncologist both agreed that I should try Lonsurf in an attempt to try to slow down the cancer growth until trials opened and so I would be in okay enough shape to handle  a trial.  So I started Lonsurf in May.  In June they were able to determine from my tumors that I qualified for a trial once it opened up.  In July, the trials were open, and we moved a scan from the end of August to the beginning of August to A scan this Monday, the first one I had since starting Lonsurf  revealed all the cancer was shrinking.  By about 15%.  Very rare.   So staying on Lonsurf until it stops working….

February, 2021

Whoops Looks like the Lonsurf run is starting  to slow - some new tumors, some growing.  But generally not too bad (i.e., no rapid growth in many places.)  The shifting baseline of what is good is weird.

June, 2021

Yeah Lonsurf Done No doubt.  Lonsurf is no longer working.  Time for the drug trial.

August, 2021

A Race In Real Life   Though I did virtual races in 2021 (including doing a 1/2 marathon on the treadmill for one race and placing in a virtual triathlon) I did my first race in real life since September, 2019.  The sprint relay at West Point Triathlon.  Had a great time seeing people I had not seen in awhile and had the team that did the Lincoln Park triathlon with me.  They did great, but I was a bit slow.  But I made it.  We even placed in T2 - we were the 2nd fastest in T2.  I am allowed to brag about that, right? ;)

September, 2021

Another 70.3   In 2019 my cousin mentioned she would like to do a 1/2 Ironman Triathlon, though she only wanted to run.  She is a great runner, but did not not like swimming much.  So I said we would do it as a relay, and signed us up for the Atlantic City 70.3  It was cancelled in 2020 , so we moved the entry to 2021.  Was another chance to see people I had not seen in a long time, including some other cousins who came into town to cheer us on.  Was not an easy race, and had a scare the night before the race (see report below), but I completed my leg of the race under the cut-off time and the team did well (good swimmer and runner :) )  

Race report for this is here: RACE REPORT FOR 2021 IRONMAN ATLANTIC CITY

November, 2021

Drug Trial The drug trial continues on.  Chemotherapy every day in three week cycles.  The first week of every cycle is two drugs in the morning and one at night.  The next two weeks is one of the drugs morning and night.  Been doing this now since June and in my sixth cycle.  The current one is not too bad.  Seem less tired.  Keeping up on training, though getting slower.  Last scan in October seemed to indicate things are growing.  The research tumors (the ones they focus and measure carefully) look about 6% increase in  size.  Up to 20% increase is considered stable.  Shifting baseline….

January, 2022

Drug Trial Done It looked like it was heading towards this, but it is official.  Drug trial did not work.  There was a brief time where it looked liked it had potential, a drop of 2% in tumor size a few months back, but then just kept growing.  No trial available at Yale (though one may open up in June) and no trial available at MSK.   Scheduled FOLFOX sessions with MSK in the hope that there may be some benefit left.  It was used post surgery as “clean up” and there was one thing on my lungs which seemed to shrink when on it and then grew.  At the time it was so small that is was difficult to tell for sure.  A year later part of my left lung was removed - it was a tumor.

January, 2022

One Door Shuts, Another Opens Was about to start FOLFOX, then got a message.  A trial  was avail able to me.  It is based on using a couple of drugs - one the acts as a Trojan Horse (for lack of better term) which works via mutations in HER-2 positive cancer then releases a “payload” of another drug that acts as a smart bomb to destroy the cancer.  It had good results with other cancers., though my mutation in HER-2 is not the “best” pathway of mutation it seems.  Feeling really positive.  Even more so when meeting the doctors.  They even were going to take some of my cancer to grow in the lab to figure out future treatments for me - the general rule of thumb is that if a cocktail works, it will usually stop working a year out.  So always playing kick the can..

February - April, 2022

Drug Trial #3 And Some Fun Races Started my third drug trial.  Pretty easy in that it is an infusion once every three weeks that is only about 1-1/2 hours longs.  

I figured a walk in the park compared to  where I am hooked up to a pump for a couple of days (FOLFOX and FOLFORI) or 10 days of pills out of every 30 days (LONSURF) or pills every day (Drug Trial #2)  [From May, 2020 through January 2022 I was on chemo almost 300 days (meaning taking a  pill of some kind)].  Sure it had some potential downside, like messing up your eyes (which is temporary) or severe lung issues (took SPO2 measurements every day and an exercise SPO2 once a week to keep ahead of it.)

By the second round of the drugs, started feeling like I was not bouncing back.   Could have been the drugs themselves.  Or 7-1/2 years of dealing with chemo.  So instead of week of  bad days and two weeks of good days, it seemed to be split 50/50.  But round 3 it was 14/7 it seemed like.

But I kept on training.  The end of February had a great trip to Vegas.  Sure I was feeling a bit more tired and my back pain seemed to be increasing, but about 15 people came to Vegas to race with me.  My brother, my cousins, my niece and nephew.  It was awesome.

I did a 5K one day (even though I was vomiting the night before from coughing and was feeling really tired overall) then did a 10K the next day.  Got three medals - RockN’Roll Vegas baby!!

Then I went to Philly the first weekend of April to do the Hot Chocolate Run.  It was great, some more cousins came to race/cheer.   My back and legs were hurting more.  And was coughing a bit more.  But the did not take away from things.

Mid April, 2022

Ruh Roh My back pain was increasing.  And I had no real bounce back time between my last infusion for Drug Trial #3 Session 4 and Drug Trial #3 Session 4.  To the point whee I was considering whether it was worth continuing in the trial.   Particularly since my March CT Scan (my first scan since starting the trial.  showed growth.   I figured I knew where things were heading.  

Got to Session #5 and was told I was done..  The RECIST reading of the April 18 CT Scan showed things were really growing, including in my spine.  The tumor they were monitoring there grew over 30% from January 20.  But it did explain the back pain.  

I was scheduled for a Spine MRI May 21, 2022 to check out the back pain.  I dropped a note to the radiation oncologist (he had done my radiation in 2018 and was familiar with me and my case) saying I was in a lot of pain.  I got a call back quickly.  It started with him saying, “If you are complaining about severe pain, we need to get this checked out immediately.”  He knew I usually understate my pain.  The next day I was in the MRI.  The cancer had spread completely between L2-L4, the Psoas muscle tumor was active again and went from about 3.5 cM (where it had been since radiation in 2018) to about 8cm.  Then everything went quickly from there.  I was given steroids to help with the pain.  They definitely helped.  

I had a tele-health appointment with a surgeon and spine surgery was scheduled for May 20.  Then scheduled for 5 rounds of radiation two weeks after surgery.  Then back to thinking I was going to be put on FOLFOX.

May To July, 2022

Surgery and More Steroids kept the pain in check and I continued training.  My goal was to train up to the day before surgery.  The surgeon was pretty positive that I would recover quickly based on my general health.   So I kept on training.  Got up to 50 miles on the bike trainer and 15 miles on the treadmill.  Then I had to reduce/stop steroids before the surgery.  The pain went through the roof.  My brother, niece and nephews came to visit.  I could not get out of bed for two days due to the pain, though eventually tramadol, motrin and other things kicked in enough so I could spend some time with them.

By the time I got to MSK on the day of the surgery,, I needed to get a wheelchair  when I walked into the lobby or I would have hit the ground.  The surgeon met me before the surgery and we reviewed things.  It turns out that  in addition to the tumors in my spine putting pressure on the cord, I had a spinal fracture in there.  (There seemed to be some small micro ones, but one he said was pretty large.  He could not understand how I was able to do everything I had been doing for the past few months.  Kind of funny.)

Then I had the surgery and into the rabbit hole for many weeks.  The pain was really pretty bad.  I also knew when it would go high - I would get warning signs as spasms started.  They tried to start with Tylenol.  I said no, I need real drugs.  45 minutes later, when I was screaming and cursing enough so people heard me through closed doors, I got an increase in drugs.  Was up and walking the next day, figured the sooner I move the better.  Had some rough parts - being moved to scans then also having to rock back and forth for some tests - but in a few days I was ready to go home.  

I began having strange symptoms when home.  Hot and cold flashes.  Headaches, nausea.  Went to urgent care.  I was concerned it was a reaction to the pain killers or I was taking too much.  After testing, scans and more it was determined that it was actually pain causing it - I was just not recognizing the pain.  They doubled the dose of all my meds.  They also said I needed to take extra meds for car rides, since i was screaming in pain just getting to the urgent care.  So once things were doubled, the “episodes” stopped.  I also found out that I had a fractured rib from a tumor that was healing, so it was at least a month old.  And I had pneumonia.  Explained some of the congestion.

The next 6 weeks was a lot of congestion, coughing up blood and pain, though I managed to get up off the couch every couple of hours and do laps between kitchen and living room.

I had the radiation treatments.  Got sick after the first one.  Just for a bit after I got home.  Then back pain started increasing due to inflammation from radiation.  Back on steroids which helped.

Then another study opened up - immunotherapy.  So had to cut out steroids.  Pain increased again.  But it has started going down.  I am guessing that the inflammation is subsiding.  Right now I really have not pain.  Yes, I am still one pain killers.  But  I am cutting down how often I am taking some of them.  And I had pain for the first 6 weeks when I was taking them more often.  So this seems like a good sign to me.

Starting the immunotherapy trial the week of July 11.  It is really just to see how high a dose of a drug can be tolerated before side effects are too much to handle.  My mutations in my cancer have excluded some treatments and also precludes immunotherapy   treatments generally.  Researchers have been looking to crack that riddle more in the last few years.  Perhaps this is the combination that works.  I am not overly positive about this, but will see.  Usually lowering my expectations works out better.  So I am keeping a look-out for more trials  and expect to be trying FOLFOX in the not too distant future.