Sunday, January 30, 2022

January In The Books, Off To The Trial

 

Not a bad brick    

 All the craziness of my friends running in the cold rubbed off on me a bit today

Tomorrow I start my third #cancer drug trial at @memorialsloangettering. I figure I may take it easy for a day or two, depending on what the doctor's say and how I react to the drugs. This will be the 6th different cocktail in the last 7 years. Each one is different, and each affects me in different ways.
And over time each one builds up to kick my rear end more.
I had taken a few days off because my back has been acting up the last couple of weeks. It may be time for another round of steroids. Last night I took an extra painkiller, muscle relaxer and slept on the heating pad most of the night. So this morning it was not so bad. I popped a couple of motrin just in case.
I figured I was going to do a bit of biking and running while the football games were on. I wanted to get about 8 miles in on the bike to get over 150 miles for the month and run at least .2 miles to get over 30 miles for the month.
Cozumel Rouvy Style
I had a small breakfast, a couple of egg bites and some grapefruit, rested a bit and decided to start during the first game. My back was a bit balky, but not too bad as I started. I put the Cozumel map on Rouvy (which I have never completed) because I know many of the portions of the route very well. One of my favorite places in the world.
January Totals    
About 1/2 hour I was feeling okay. Lungs not complaining. Legs not complaining. Back not complaining. So I didn't complain. Just wanted to take it easy and keep HR low. Then I was an hour and a half in. Then 22 miles and feeling okay. Just kept on pedaling.

Bounced to the treadmill. I had to get .2 miles in. Then the inevitable as I watched the game. Finally decided I would be done when I hit 5K. A nice target.
Over 190 miles biking and almost 33 miles running this month. A good start to 2022. I am still not sure if I will ever do a 70.3 again, or even a sprint triathlon, solo. But a relay is never out of the question.




Friday, January 7, 2022

Strike Four

  

I sort of kind of knew I was close to be punted from my current drug study. And clearly I forgot how compounding works, so much for my M.B.A. 😉

Just got a call from @Yale. The total growth is about 19.7% since start of study. 20% is an automatic out. There may have been a way to squeeze another round in, but one of the other issues is that there were many tumors that were not measurable in my lungs which are now measurable.
I may try to go back to FOLFOX, may be able to squeeze a few treatments out before the neuropathy comes back. And it will come back rather quickly. Or I can go on Stivarga, which is a pretty nasty drug.
It seems FOLFOX may be the move. Normally at this point people are not in the shape I am in. It is tougher to handle drug combinations, as compared to one drug, the worse shape you are in. But if it slows things down a bit, it may buy me the time I need.
It is a lot of fun. Cold sensitivity - touch the handles on the fridge and you want to scream, wear a scarf because breathing air can hurt, were the main things I had the first time. The neuropathy also, which remained. But otherwise I did okay. Queasy during the first week of each two week cycle, but usually some crackers did the trick. Plus I didn't eat much the first week of each cycle, so it will help keep my weight down.
Then Stivarga, which my oncologist said, basically, they would rather see me die a few months quicker then deal with what it normally does to people. But I have been good with #chemotherapy overall, so obviously I will give it a go when needed. There may be a time when I stop. But it is not today.
I am going to climb on the bike shortly and watch The Michael Kay Show, get my head back straight a bit and get out of this short pity party.
Like I said, I knew it was coming the last few months, but still not fun.

Thursday, January 6, 2022

Three and a half strikes?

 Got the none drug-trial read on today's scan.  The report pointed out 10 of the tumors in my lungs (usually not that many are reported.)

This is a partial list of the extensive #cancer lung tumors (and I had part of left lung removed in 2015).  It does not include lymph nodes or spine.  It is when I look at things at this and just shake my head.  No other way to figure out how I am not on a couch on oxygen other than the exercise #triathlontraining

There will be an official read of the tumors for the study to see if I break the 20% mark.  Since the conclusion is lesions "slightly" increased in size,  I am guessing I  will be able to remain in the study for now, subject to seeing what happens with the blood work next week, or if genetic testing comes back before hand with a clear path to the next drug.

As an aside, a couple of reasons that I may be slowing down a bit is the chronic Grade 1 anemia.  And a hernia, which can happen from abdominal surgery.  It was mentioned a couple of reports ago, but I read it as an old one that was fixed at the time of the surgery in 2015 (didn't even know I had it then, was just a bonus they told me they fixed)  


But that does explain some of the physical issues (i.e., some pain when biking or running).  As long as I do not DNF, I am okay though I am considering asking to get a half hour extra if I do another 70.3 to compensate for all the #cancer #chemotherapy and hernia 😉 

Tuesday, January 4, 2022

Four Strikes And You Are Out, Hoping They Dropped Strike Three Today

 

Pinhead.  Kind of.

Two weeks ago I went to @Yale for my 8th round of the drug trial I am in.  But my blood work was borderline.  So a wasted hotel night and round trip.


One week ago I went to @Yale for my 8th round of the drug trial I am in.  But my blood work was below borderline.  So a wasted hotel night and round trip.

I was feeling under the weather yesterday, I think maybe a bit of food poisoning, so was not 100%.  But we had scheduled a blood test locally at MSK to see if my blood work was okay in order to avoid another trip for no reason for the third week in a row.  Results came back within an hour and they were fine (kind of amazing how much medicine you learn with 7 years of cancer ;) ) They came back fine. Sent them to my doctor at Yale and he confirmed my findings. 

 I did not get a hotel yesterday, whatever I had going on was beating me up too much to drive at that point, so did the whole trip today.  Got my blood drawn.  Went to see doctor before getting the meds.  But my blood work crapped out again.  Since yesterday.  Could be I was more dehydrated yesterday, maybe a bad blood draw or results.  So I went back to nursing to get another blood draw, this time from my arm.  Urgh.  I have gotten used to the port.  

 The results came back.  No good.  We wound up doing it a third time, still no good.  No drugs today.  I did manage to get a flu shot though.  Figured while I was out and about, why not?  Particularly because I am back to limiting contact with the outside world (isolating again) with the current Covid surge.

Pinhead.  Kind of.
Two weeks ago I went to @Yale for my 8th round of the drug trial I am in.  But my blood work was borderline.  So a wasted hotel night and round trip.


One week ago I went to @Yale for my 8th round of the drug trial I am in.  But my blood work was below borderline.  So a wasted hotel night and round trip.

I was feeling under the weather yesterday, I think maybe a bit of food poisoning, so was not 100%.  But we had scheduled a blood test locally at MSK to see if my blood work was okay in order to avoid another trip for no reason for the third week in a row.  Results came back within an hour and they were fine (kind of amazing how much medicine you learn with 7 years of cancer ;) ) They came back fine. Sent them to my doctor at Yale and he confirmed my findings. 

 I did not get a hotel yesterday, whatever I had going on was beating me up too much to drive at that point, so did the whole trip today.  Got my blood drawn.  Went to see doctor before getting the meds.  But my blood work crapped out again.  Since yesterday.  Could be I was more dehydrated yesterday, maybe a bad blood draw or results.  So I went back to nursing to get another blood draw, this time from my arm.  Urgh.  I have gotten used to the port.  

 The results came back.  No good.  We wound up doing it a third time, still no good.  No drugs today.  I did manage to get a flu shot though.  Figured while I was out and about, why not?  Particularly because I am back to limiting contact with the outside world (isolating again) with the current Covid surge.

I have a scan in a couple of days to see what is going on. If there is too much growth I am out of the study. I am scheduled to try again one more time next week to see if my blood work bounces back, if it does not for the fourth week in a row, out of the study. Just like baseball, four strikes and you are out ;) Still waiting for the gene testing results for next moves.

 Yeah it is a bummer, but still found ways to laugh.  The doctor and staff running the study are great, as are the nurses.  We always find a way to laugh.  

There is one nurse who obviously keeps on picking the short straw and winding up with me.  So as I was going through all of this we were both making one another laugh.  Even helped me with the selfie below.  Needed extra hands.  LOL.  To do what they do day after day is difficult, and they are all such an amazing part of the treatment and make bad days a bit brighter.  So thank you all.

Hopefully I will be up for running and biking tomorrow.  #triathlontraining Today is another forced rest day as I try to bounce back from whatever this was.  (Plus low blood count can do this.  In addition to low absolute neutrophils, I  am slightly anemic all the time.

Port access, two arms and a shoulder shot.  Watch out  #Pinhead #hellraiser


 Yeah it is a bummer, but still found ways to laugh.  The doctor and staff running the study are great, as are the nurses.  We always find a way to laugh.  

There is one nurse who obviously keeps on picking the short straw and winding up with me.  So as I was going through all of this we were both making one another laugh.  Even helped me with the selfie below.  Needed extra hands.  LOL.  To do what they do day after day is difficult, and they are all such an amazing part of the treatment and make bad days a bit brighter.  So thank you all.

Hopefully I will be up for running and biking tomorrow.  #triathlontraining Today is another forced rest day as I try to bounce back from whatever this was.  (Plus low blood count can do this.  In addition to low absolute neutrophils, I  am slightly anemic all the time.

Port access, two arms and a shoulder shot.  Watch out  #Pinhead #hellraiser


Dead Inside ..I’m Not Dead Yet….

   I have been dealing with cancer for 10 years.  I am perfectly aware of my condition.  In fact I have been putting together things for the...