Still At Bat!

Yesterday and for much of today, Lee and I spent in the Phoenix-Scottsdale area. As I mentioned in my last post, it’s been a lot of closed doors for me as I tried to get into various clinical trials. And then, all of a sudden, I essentially received an invitation for a new trial that had just gone into the expansion phase. After reviewing medical information we frantically provided, they scheduled me to come in to sign the consent form and do a bunch of tests and scans. After having struck out with three prior trials, we were ecstatic!

However (gawd how I hate “howevers”) I received a phone from the clinical trial nurse a few days later telling me that the trial director, Dr. G., did not think I had sufficient disease progression to qualify for this trial. In order to qualify, patients had to have failed three different chemo treatment regimens. He felt that from the last report that I was essentially still stable on my current Lonsurf chemo. I was still welcome to come to the appointment with Dr. G. and get set up as a patient for potential future trials and that Dr. G could change his mind after meeting with me. Note to reader, they know that even if I was technically stable it would only be a matter of when, not if, Lonsurf would fail. So it’s always good to have prospects lined up, basically I was being shipped down to the minor leagues.

Nonetheless, I accepted their challenge. That is how I viewed the situation.  

We kept the appointment. To me they were absolutely wrong in their assessment. I had disease progression. Slow progression, but steady progression. I was a ship sinking, taking on water and the bilge pumps couldn’t keep up. But I was also in great physical shape for a cancer patient with nearly two years of constant chemo. Not to mention intelligent, science savvy, wonderfully charming and witty… a perfect specimen for their trial.

Several of the readers of this blog know me from my Mitsubishi days. Some were once my customers. They know my level of preparation and professionalism. I never showed up and just asked for an order. My customers and I planned for mutually beneficial business results based on logic. My meeting today was no different. I’m certain that Dr. G gets plenty of patients pleading for inclusion. This physician-scientist, a leader in immunotherapy trials, has no doubt become immune to such efforts. Frankly, I  was not optimistic with my chances, but  I have never allowed my pessimism to stop me from trying. I enlisted the assistance of Dr. P. and asked him to reach out to Dr. G. to discuss my case. I made certain that Dr. P knew my deadline. I wanted Dr. G to have the info, hopefully in the form of a conversation, from Dr.P before my meeting.

But, I had to have more than just my oncologist’s help, so I built a killer spreadsheet.  I analyzed all of the scan reports. Instead of TVs, projectors and audio, I crunched the numbers on my left lung, right lung, and liver. It  was crystal clear to me that this showed Lonsurf chemo was failing.  

It is very interesting that at one point last fall I had planned to have both lungs radiated. They were both mapped and scheduled for radiation. But then Dr. M wanted a biopsy of an untreated tumor in December for information for off label drug uses or potential clinical trials. At the last minute we excluded the radiation in the left lung to allow for biopsy access. If that hadn’t been done, I would be excluded for many, if not most, of the cutting edge trials. 

When we arrived in Phoenix yesterday afternoon I contacted Dr. P’s office to verify that he had contacted Dr. G.  Unfortunately, nothing had happened. I was crestfallen. Now it would be up to a slimy salesman (that is me) trying to convince a scientist that he was in error. “Just trust me on this one doc,” was what I heard in my head. 

It is Major League Baseball spring training in Phoenix.  The thought occurred to me that I was going to be me wearing the collar, 0 for 4 on clinical trials.  But Lee and I had a good birthday lunch for sister-in-law Susie and enjoyed a visit with my brother, Gino. Then Lee and I checked into our hotel and had a nice dinner and relaxed, game day was tomorrow. 

My appointment with Dr. G was at 7:30am this morning. I was told to be there at 7:15 sharp. At 7:25 with no one other than Lee and l on premises,  I was not feeling very confident. But the door was finally unlatched at 7:28, not that I was overly concerned or anything.  

Our meeting with Dr. G  was good from the get-go and then it got better. He reviewed the reports and suggested that Lonsurf was working., keeping my cancer in check. I gently disagreed and offered that that I had a spreadsheet that I thought illustrated that Lonsurf was not keeping my disease stable. I was shocked that he was genuinely pleased to look at it. It generated a conversation that he actually agreed with my analysis. However, he wanted to review my numbers.  What!!! He didn’t trust a salesman?😄. 

Dr. G. also stated he would call Dr. P. at lunchtime. Early this evening , the clinical trial nurse called me to let me know that both doctors connected and and they both agree I’m a good fit for this trial. One week from today we head back up to Scottsdale to sign the consent agreement and do all the tests!  Not only did I NOT wear the collar, I hit a home run. 

7:25…is anyone there?????

Dr. G waves his left hand over my face, an immunotherapy voodoo practice.

A hopeful Jimmy celebrates with an Americano and blueberry muffin!

I was able to complete one pet portrait this month, Maggie Mae.  A beautiful rescue border collie mix found malnourished and wandering the streets. She is now in a forever home and, I’m sure, spoiled rotten! Maggie..wake up there’s something I have to say to you…

Time For A Clinical Trial?

For the past few weeks, as the rate of disease progression has slowly increased, we have been much more focused on immunotherapy clinical trials. At any moment my cancer can mutate and explode. Cancer does not necessarily have linear progression. The fact that I have felt better in the last couple of weeks than any time since my treatment began can be “fools gold” by lulling me into a false sense of security. Dr. P strongly suggested during our meeting last week that the sooner the better was the best plan of action. The fact that I feel good and am in good health is the perfect time to do a trial.  

Finding clinical trials is a very confusing, time consuming, and an intellectually challenging task. The federal website of trials, ClinicalTrials.gov, is like a sink hole. It can swallow you up. There are thousands of trials all over the world. The site does a poor job of sorting them by type of cancer, trial purpose, and does a poor job of keeping them current. So trials shown as recruiting may be closed, new trials that are recruiting may not be listed. Then you must decipher if the trial makes medical sense for you, based on the science involved and the biological makeup of your disease. If you’re not an oncology scientist, good luck. You will spend hundreds of hours researching medical abstracts, with Google handy to explain the terms. That assumes you have the bio markers of your tumor, which many patients may not have. 

To my rescue has come a wonderful group called ColonTown. ColonTown, a private FaceBook group, has created a spreadsheet of trials designed to address the general characteristics of my tumors sorted by purpose and by state and country. ColonTown has a few thousand patients like me along with caregivers. It offers emotional support, but offers more than that. They have a subgroup devoted to trials and science only. Among its members are patients who are also oncology scientists who can explain the science of a trial, forward information on the drugs and many members can share their experiences with the trials. One trial I was investigating listed a drug only by a code number. I inquired among the group if anyone knew what it was and the science behind it. A fellow member and Oncolgy scientist found the code name drug on the drug developer’s resume (he was looking for a new job) with an explanation of how the drug works! Ha! I am now on the waiting list for that trial in Tucson.
Immunotherapy has had some success, but it has been limited to cancer with what is referred to as “hot” tumors. With colon cancer 85% of patients have “cold” tumors. Unfortunately I am in with the majority who have “cold” tumors. The goal of current immunotherapy trials is developing ways to turn “cold” tumors into “hot” tumors. I think of the tumors as “hot head” tumors or “stoic” tumors. With “hot head” tumors it is much easier to get a reaction. Just as with hot head people, it’s easy to push their buttons and get the reaction you want. Keytruda and Opdivo are two similar immunotherapy drugs that have had success with “hot” tumors, but virtually no success with “cold” tumors. Tumors that are “cold” are like stoic people who are not so easily manipulated. So with these tumors, instead of using one type of therapy drug to attack the tumor, they use two or more. These therapy drugs are called pathway drugs. Their goal is to find a pathway into the tumor for our immune system to attack. Early results are encouraging. There are other immunotherapy methodologies such as lab created viruses or proteins that are designed to breakdown the tumor armor, opening the door for our immune system to kill the stinking tumors off.

Last week I was turned down on two trials, one because of insurance, the other because of my polio history. Through ColonTown I found another trial. This was a Phase 1 trial that was basically testing the toxicity and dosage of the drugs. It just so happens that they had just finished with that stage and are now in the expansion phase. They called me early Thursday afternoon as they were preparing for a meeting on Friday morning to select cohorts for this study and wanted me to email them information, lots of information, so that they could include me in the review. So little Lee spent hours scanning 23 and 26 page bio marker documents into PDFs along with many other documents of scans, radiation notes, blood tests, doctor notes, etc. Some of these I had to go to Dr. P’s office to retrieve. It was worth the effort. Friday afternoon they called and requested that I come in to “seal the deal.” We have an appointment next Wednesday with the CEO and top researcher of Pinnacle Oncology in Scottsdale. They also offered another trial, but it is a “first in human” dosing trial. Although it worked in primates…I dunno. In either case, as with most early-stage trials, they usually fail. We are going into this with our eyes wide open and can always drop out whenever we wish. Still, the science is there. And there are thousands of brilliant scientists and hundreds of billions of dollars chasing this problem. I also remember the brain cancer survivor at the talk I gave last week. Her trial drug did not pass the FDA threshold of efficacy but has worked for her now for nearly 20 years! So here we go on our next adventure.

When I am doing a trial, I will be leaving Dr. P and the folks at Arizona Oncology behind. They are great people from top to bottom.  In April I will be featured on their parent company’s website, US Oncology. Below our two photos they took of me and the people who took such great care of me the last 22 months. Thank you Green  Valley  Arizona Oncology!

These are the fine folks that took such good care of me. I’m the most handsome one in the middle.

Kathy, my palliative care nurse and speaking partner, and I gave two public talks

Enough To Drive Me To Drink*

Well today started out great, unless you don’t like getting up early for no apparent reason. At least I thought I would be able to enjoy the beautiful sunrise. Too bad it was still two hours away at that point. But it was a big day with lots to do, so I had another spot of tea.

We started out the morning up in Tucson at the University of Arizona Cancer Center for my “Live Life Well With Crappy Diseases” 10:00 am presentation to their Brain Tumor support group. I didn’t bother to look at the address because I know where the Cancer Center is, I’ve been there recently investigating clinical trials with Dr. M. So we arrived a little early to set up but couldn’t find room #2920. When I inquired as to its whereabouts I was told their room numbers don’t go that high. Perhaps it’s at the other University of Arizona Cancer Center, they say.  I say “THE OTHER”??? Fortunately it was only a few blocks away, unfortunately I went the wrong way. But we eventually got there, arriving fashionably late. All was forgiven as I was an absolutely brilliant presenter, as usual.

Then it was time to rush back to Green Valley for my 1:00 pm appointment with Dr. P. The primary purpose of this meeting was to review my first CT scans in 90 days. Although I feel great, especially now that my cough has been dealt with, you need to look under the covers to see what the evil tumors are doing and to evauluate the effectiveness of my oral chemo, Lonsurf. 

Starting with my lungs, they found no new tumors, always a good sign. In my right lung, where I had radiation on one tumor near my airway, both of the reference tumors had shrunk. In the left lung one of the reference tumors was stable.  Two other tumors which previously were separate, but adjacent, are now one ugly mass. However, the size of this combined mass is still about the same overall size as the two individual tumors. So I’d call that a mixed bag, but pretty much stable.

My liver, where they did the radioactive isotope drop in November, looks good. The tumor has shrunk and is showing signs of calcification. This is a normal result of Y-90 treatment and the tumor should continue to shrink and die over the next several months. My lymph nodes are stable. All of my liver and kidney functions are great. There was one spot in my GI tract that will need an MRI but might be nothing. CT scans only show so much.

The Lonsurf seems to still be a good “treading water” option for me, slowing the cancer growth and buying me some time. We are continuing to examine and apply for various clinical trials. I am still on the waiting list for two in Tucson and I recently applied for a trial in Scottsdale but was declined because I am a polio survivor. The trial director didn’t think it would be a problem, but the pharmaceutical company rejected me. If you want to boycott them, it is F.Hoffmam-LaRoche.  This is the second trial for which I have been rejected. The first rejection was before I started Lonsurf last summer. They rejected me because I had not included oxaliplatin, a normal chemo drug, in my regimen because is causes neuropathy.  Polio boy won’t recover from the neuropathy, so I excluded it. So they excluded me, over the objections of the clinical trial director. Ahhh, the moutain is pink…it’s time for a drink!

*I didn’t say it was hard to drive me there.

Now for some fun stuff.  I recently discovered a company, pixels.com, which takes images and puts them on all sorts of fun merchandise. Perfect for Jimmy Art!!  They do apparel (t-shirts to baby onesies), coffee mugs, phone cases, note cards, towels, bedding, prints and more. Some items, like the shirts, you can customize the size of the image and choose your background color. Pretty cool. Please check me out.www.jimmy-asbell.pixels.com

Jimmy enjoys his new Jimmy Art coffee mug, t-shirts and note cards.
My latest painting!  Isn’t Jax a cutie?