Happy Father’s Day!

Happy Father’s Day to all you fathers out there. Below is my favorite photo of my stepfather, the man who raised me. He is at the wheel of his 1951 Riley, a car from England noted for its style, sportiness, and unreliability. It was my dad’s second love, my mom being his first.


Things are pretty much status quo here in the desert. My pulmonologist is gone this month, I have a followup appointment from my mid-May bronchoscopy with him on July 10. Hopefully he will have some tricks to curb my annoying cough, he was certain he would, but needed to wait for some cultures that take over a month. I had my third Opdivo infusion on Tuesday and things went very smoothly. Other than that I’m not having any bad side effects. We still have no idea as to whether this drug combo is actually working or not. That will change next week. I have a CT scan on Monday and next Friday we have a meeting with Dr. M to review the scan.

During the Opdivo infusion we could take breaks to enjoy their gardens.

My gut feeling is that the trial is not working for me. The vast majority of Phase I trails fail. Of course, I understand that my “gut feeling” is nothing more than my anxiety mixed with impatience. At my monthly meeting with my regular oncologist Dr. P, I shared my concerns and asked his opinion if this trial fails should I find another trial? He was unequivocal that I should pursue another trial, as I am in good shape. In the past we have discussed all options in my treatment. He is a proponent that early hospice will extend life rather than fighting to the end, so I value his enthusiastic opinion I should do another trial if this one isn’t working.

My plan is to select several trials and, should Dr. M determine that this trial is not working, get his input on these other trials. There are currently a whopping 765 trials featuring immunotherapy, quite a few to sort through. Some of these trials will have over 100 trial locations scattered all over the globe, while others will only have a few locations.  My current trial has only 5 locations, all in the U.S.

So let the sorting begin. If I restrict the trials only to Arizona there are 30. However, many trials will not accept a patient who has previously been treated with immunotherapy, and that be me. Applying that filter, the number of available trials is only 12, one in Tucson and the rest in the Phoenix area.  

Hmmm, perhaps I’m thinking too small. Perhaps I should search globally. There are a lot of trials in Barcelona. I’ve never  been there. We would have to rent a place near the trial location for six months. We would also have to budget in trips to all the various wine regions, maybe include France and Italy. It would be expensive. I suggested a “Go Fund Me” to Lee. She was less than enthusiastic. Oh well, Scottsdale is nice.

I am looking forward to next Friday. Jimmy no like limbo land. It will be good to move forward. It will also be good to celebrate our 18th wedding anniversary. It was actually May 23rd, but that was an all day infusion day for us. So we have our meeting with Dr. M late Friday afternoon, then we immediately depart to Hacienda Del Sol, a resort nestled up against the Catalina moutain range for a night of luxury.  

Live life to its fullest!

Jimmy Has A New Hat!

Yesterday I got a surprise package in the mail from my friend Harmony. Oh boy! Inside the box was an Oregon Duck cowboy hat.  Yippie-Ki-Yay I say! It just so happened that I had a presentation of my book and CAPE philosophy scheduled for this morning and the new hat was a fantastic addition to my presentation outfit. Perfect timing Harmony, thank you!

duck hat

The presentation was for the Forum Club of Green Valley. They have a speaker every Wednesday morning. The club president had attended one of my earlier talks and he thought I would be an ideal speaker for his group. This made me feel good. While we are on the subject of feeling good about myself, my insurance company assigns case mangers to their cancer patients. In a conversation with my case manager she mentioned that I certainly seem to know a lot more about cancer and treatment than most of her clients. I replied that I had written a book about how to deal with crappy diseases. She purchased it and told me how wonderful it was, and that she and other case managers are now using my CAPE philosophy with some of their clients. This made my day. My goal is to help people and this extends my reach beyond what I can personally do. It also makes me feel good about my brilliant writing skills. In addition, my book has been selected to be added to the Arizona Talking Books Library. Now my book will be available free of charge to those who do not have the ability to read.

Fortunately, my new hat is adjustable should my head swell too much.

Well, you’re probably wondering how my treatment is going, and so are we. We have no idea if it is working, but I’m feeling fine. My last infusion of Opdivo was boring…I mean 12 hours of boredom. But that is a good thing. Unlike the previous infusions, nothing exciting happened (medical excitement is usually bad) until the very end. The vampire was making the last blood draw of the day and he had a student with him.  I think he must had been showing him what NOT to do and blew the vein leaving me with a 3″x 2″ bruise. He then switched arms and showed the student the right way to do it. I had no “day after” side effects from the Opdivo, although I still have my annoying cough which makes it difficult to sneak up on people.

I will have another set of CT scans in late June so we should know more then.

My most recent infusion was on our 18th wedding anniversary. It wasn’t a particularly romantic day this time, but a day without any adverse health crises, and a day that will hopefully enable us to enjoy our 19th wedding anniversary. Our friends Ralph and Mary thought, rightfully so, that I’d be too worn out to take my bride to dinner and my bride would be too pooped to cook, so they brought us a wonderful anniversary dinner to our home, complete with flowers and a card.

mary ralph

The balance of this week and all of next week I am a free man with no doctor appointments. My back feels better which means I can catch up on my painting. Below is my latest effort. Tillie is a Nova Scotia Duck Tolling Retriever puppy. She has her very first duck and, based on that determined look in her eyes, it’s hers to keep!

tillie

This was a very hard painting for me to do because it represents a dawg having its way with a duck and brings back nightmares of the last game my Oregon Ducks played against the dirty dawgs of Washington. They destroyed us 70-29. Oh the horror!

 

 

Flying Blind

I have been grounded on my clinical trial since May 1st due to a “Significant Adverse Event” from my last infusion of the oncolytic virus. That infusion resulted in me spending a lovely overnight in the ER at Banner University Hospital. The infusion reaction combined with my chronic cough caused Dr. M to call a “time out” for Jimmy. The break meant I had to miss my second round of the immunotherapy drug, Opdivo, which is not good.

During the time out we also received my first CT scans since I started the trial. These showed about a 15% increase in tumor size with some new baby tumors in my lungs. Bad news again. I also saw a pulmonologist and had a bronchoscopy on Wednesday. The bronchoscopy reduced my cough, but I will probably always have some degree of chronic cough. The coughing is most likely a result of chemo treatment that caused multiple lung infections. Ah chemo, the gift that keeps on giving.

So these past two weeks we had lots of time to ponder. Would they drop me from the trial? If there is too much disease progression that’s what usually happens. Would they drop me from the trial because of concerns about my lungs? Opdivo can cause lung damage. Was the condition of my lungs too risky to remain on the trial?

Fortunately for us, our neighbors Barb and Joe, brought us a Maeki-neko, a “Beckoning Cat,” back from their cruise around the world. This Beckoning Cat hails from Japan and brings good fortune. It seems to be working for all of us, including our fuzzy feline Cotty who is battling lymphoma. Today, we finally got some good news. FullSizeRender (11)

Lee and I had a meeting with Dr. M this morning and the trial is a GO again. My next Opdivo infusion is scheduled for Tuesday, which just happens to be our wedding anniversary. Pretty romantic, don’t ya think? I am going to pull out all the stops and buy Lee a latte from the cafe and a “cancer sucks” T-shirt from the cancer center gift shop.

We still don’t know if there is actual disease progression. Dr. M thinks it is pseudo disease progression. This occurs when the immune system is attacking the tumors making them look larger on CT than they actually are. Only time will tell. We don’t know if the Opdivo will further inhibit my lung  function. Only time will tell. We haven’t received the results of the last lung biopsy which we hope will reveal how the oncolytic virus affected it. I do know that other than a cough, I feel great.

There is a lot I don’t know at the moment. I’m flying blind…..but at least I’m flying!

Green Valley News Column May 14

Happy Mother’s Day to all of you readers who qualify! I hope you had a wonderful day.

Below is my column that appeared in the Green Valley News today. You can also read it on line, gvnews.com. At the end the column I mention that I will see Dr. M, the clinical director, tomorrow with the hope of getting some answers to my questions and determine my course of action. However, since I wrote the column a bronchoscopy has been scheduled for this Wednesday. Dr. K will run his little camera down my lungs and have a looksee to see what is going on in there. He will also be prepared to freeze, fry or stent in order free up my airway. Oh how I long for some deep breathing! As a result of the new procedure Dr. M changed my appointment until Friday and we will review all the scans, biopsy and bronchoscopy results.

I have finally had more time lately to get back to my palette and brushes. Below is Rusty, a fun loving Havanese with a strong gaze. This was a custom pet portrait that I donated to the Relay For Life auction in April. Rusty came over with his owner to pick up the painting over the weekend. He sniffed it, then licked it, then licked me! An obvious approval!FullSizeRender

GVN column May 14 2017

 

Wondering

Lee and I have just arrived home from the hospital after my third lung biopsy in about the last four months. I’m getting pretty good at this lung biopsy business. Maybe I should write a “how to” book, Lung Biopsies for Dummies.

That last infusion of the oncolytic virus Enad certainly kicked my butt and I didn’t fully recover until Sunday. You will recall it was determined that I should have no further infusions of Enad since I had reached my MTD. Question: I wonder how much difference there is between the Maximum Tolerated Dose vs. the Minimum Terminal Dose? Just wondering. But it does not appear there was any permanent damage to little Jimmy. The worst symptom after the firestorm on infusion day was the swelling of my lower extremities, especially my polio-impacted left foot. Since I have very poor circulation in my left leg and foot, I am susceptible to edema. I found myself icing down and massaging my fat, puffy left foot and lower leg multiple times a day. Getting my left leg out of my brace was like removing a sausage from its casing. But by Sunday it was much better and I was ready to do battle again.

Monday I had my normal “day before infusion” blood draw and physical with Dr. M. This is typically a routine and uneventful few hours, so Lee elected to stay home to visit with the Air Conditioning man. I’m glad she did, it was triple digits today! However, this particular meeting was anything but routine. Evidently Dr. M had been cogitating about my nagging cough. He was now deviating from his prior pronouncement of last Wednesday when he informed us that we would go forward on the trial as scheduled with an Opdivo infusion on May 2. Now he wanted to hold off Opdivo until he had a better understanding of that cough of mine. At my ER visit they took some X-rays of my lungs, and he saw something he found suspicious. A valid concern since one of the more serious side effects of Opdivo are lung issues. He arranged for me to have a CT scan of my lungs as soon as I left his office and, after looking at the scan, called me later that afternoon with reaffirmed concerns. I wondered if Dr. M was gonna drop me from the trial. But he is not a lung expert so he had me see the head pulmonologist at the Cancer Center on Thursday.

Dr. K is the program director of Interventional Pulmonary at the University of Arizona School of Medicine. His major flaw is that he graduated from the Ohio State University. I have horrible memories of the NCAA football championship game a couple of years ago when his Buckeyes threw my cherished Ducks around the stadium like they were, well, like they were toy ducks! But he seemed like a nice guy and after reviewing the CT scan and examining me, he was confident that he can help me with my cough. He gave me prescriptions for a more powerful inhaler and some magic nasal spray. In addition he will perform a bronchoscopy to see if anything is blocking or collapsing my airway. If there is blockage he will remove it, if there is outside pressure he can put in a stent to keep the air flowing. He also felt that I should be able to continue on the trial, but that is not his call. While in his office, we asked if he could send us the CT scan report, which details tumor status. Much to our dismay there was growth in the tumors along with some new “baby” tumors since my last scan on March 1. We are now wondering if Dr. M (or the trial sponsor) will drop us because of disease progression. On Monday I have another CT scan of my abdomen and pelvis to see what is going on in the liver and other gut areas. Cancer can pop up anywhere at any time for a Stage IV Colon Cancer patient.

Although there has been significant tumor growth since March 1 in my lungs, my first and only dose of Opdivo was just three weeks ago. When did the growth occur? I wonder if maybe the growth was before Opdivo? There is also the phenomenon of “pseudo-progression” when dealing with immunotherapy. I wonder if it is a case of pseudo-progression? Sometimes it looks like progression on a CT scan, but it isn’t, and may precede a good and prolonged positive response. Isn’t cancer fun? No one knows for sure most of the time. We are not the only people wondering. So are the oncologists.

In any case, this will all sort itself out soon enough. I have a lot of wondering goin’ on, but I have no wondering about what I will be wearing and drinking tonight. I’m wearing my favorite new wine shirt (thanks Carl and Gerrie) and drinking arguably one of the finest Chardonnays in the world (double thanks, Max).

Live Life to its Fullest!!!FullSizeRender (14)

 

 

 

 

 

 

 

Significant Adverse Event

 

Well, my infusion Tuesday of the oncolytic virus Enad didn’t go so well. I had two bouts of the rigors, the first one about four hours after infusion of the virus. They pumped me full of Demerol and Benadryl to stop my shaking and chills. The drugs did their job and Jimmy was very relaxed and happy. However, about an hour later, here we go again with a “whole lot of shakin’ going on.” My oxygen level also dropped to the low 80’s making me hypoxic. This means there was a deficiency in the amount of oxygen reaching my body’s tissues. Not a good thing. The drop in oxygen was rather rapid causing a condition called “ataxia” with symptoms of intoxication. If I’m going to act drunk, I prefer the cause to be the over-consumption of fine wine, rather than lack of oxygen. I feel cheated!

So it was decided to ship me off via ambulance (so I could get some oxygen) to the oncology floor at the University of Arizona hospital. Unfortunately there was “no room at the inn” so they parked me in the ER overnight. This was not Jimmy’s most fun filled evening, nor was it very relaxing. At one point my fever hit 104.

In the morning the nurse wanted to give me some tests to help determine the cause of my emergency event and  wanted to give me a shot of heparin! I tactfully, as a sleep deprived person could, explained to him that I already knew the cause and I didn’t need the heparin since I was leaving in a few minutes. I think it went something like: “No (expletive deleted) way, now get out of here..shoo, shoo!”

me in er

My heroine Lee arrived early in the morning to rescue me from the bowels of the hospital, after preparing breakfast for Lord Cotswold the cat, of course. Several hours later, after visits by two different doctors and the flushing and closing of my IV port, I was released. In the interim we were contacted by Dr. M’s nurse indicating that he would like to meet with us. So instead of heading home to a hot shower and a nice comfy bed, we drove the two miles to the Cancer Center to visit with Dr. M.

Dr. M was concerned about the infusion and referred to it as a Significant Adverse Event (SAE) to the Enad infusion.  SAE is a medical phrase for an undesired harmful effect resulting from medication or other medical intervention. Dr. M rated it a Grade 3 SAE. He recommended that we discontinue the two remaining Enad infusions that were planned. This is a Phase One trial. The purpose of this Phase One trial is to determine the maximum tolerated dose (MTD) along with anti-tumor activity. My body was signalling that we were near my limit, my MTD. There is a limit to the amount a body can take of the virus. My responses to all four of my infusions indicated that Enad was working, causing all sorts of havoc, and there was little or no additional benefit with additional infusions and not worth the risk. The other patient on the trial here in Arizona reached his MTD after three infusions. Dr. M suggested that we continue the trial with Opdivo. It is required that Dr. M notify the trial sponsor, PsiOxus, of any SAE within 24 hours. After reviewing the information, PsiOxus agreed with Dr. M.

Although I know this is the smart decision, I am a little bummed.  My thinking was that they had planned on six shots of Enad for a reason and I’m only getting four. Lee reminded me that more is not always best in a Phase One trial. In the Phase One trial of Oxaliplatin, a successful chemo drug, the patients that had the largest dosage ended up with permanent nerve damage, while those patients with the lower dose had temporary side effects. Next week the trial continues with my second infusion of Opdivo. Now if you will excuse me, it’s time for a splash of white wine to knock the dust off this day, which should tell you I am feeling fine.

 

 

 

 

 

Pincushion Man Rides Again

  Today Lee and I had a visit with Dr. M at the University of Arizona Cancer Center and he was quite excited that I am such a boring patient. I had no side effects to share with him, oh how boring of me!  My blood work is boring, I have no rashes, no bulging or swelling, even my cough has diminished a bit. Just totally boring. My only problem is self-inflicted back pain from exercising, which is on the mend.

But I’ll have another opportunity to generate excitement beginning tomorrow. Week II of “Hell Week” begins tomorrow with my second round of Enad, the oncolytic “cancer killing” virus. Actually this round will be a hell week two-two. No, I won’t be wearing a ballerina outfit, but they are spreading out the infusions over more days. So instead of three infusions over five days, with only one day in between to recover, I will have two days between the infusions. All the infusions are essentially 12-hour days, so this new schedule should allow Lee and I to recover a bit between infusions. To fill out the balance of the second week, the Cancer Center is throwing in an all day Opdivio immunotherapy drug infusion and then a lung biopsy the following day. The lung biopsy will reveal how well the Enad virus penetrated the tumors. The following week I will have a CT scan. It will be a busy and uncomfortable couple of weeks, but by mid-May we should have a pretty clear idea how this little experiment is working.

The balance of the clinical trial settles down after this to a single infusion of Opdivo every three weeks, with a few office visits, CT scans and blood draws thrown in for chuckles. Lee and I are looking forward to the extra free time. It seems that the last five months have been nothing but procedures, treatments, tests, scans and consultations. 

Speaking of fun, I went to a reunion on Saturday. Well, actually the reunion came to me when several Mitusbishi alumni gathered in Green Valley. It was great to share memories, laughter, good food and wine.  

Live life to its fullest!