My Recent SF Surgeons Visit, Outlook, and Latest Infusion - The IIIrd

San Francisco hospital where I met my surgeon

My brother and I went to San Francisco together for the surgeons consult. The appointment was on a Monday, and we left the house mid-day, and got there well in time to find parking, get a coffee and head upstairs to the appointment. The facility was dedicated to Liver Transplant surgery and specialty, so there wasn't many people there, but a very nice facility.

I am so glad Chris went along, as what I am including here is a lot of what is, but so much better to hear it directly and understand the full scope of what's ahead. It meant a ton to me for him to take the day and go, and am so glad he did as he has been in tune and supportive of what I need. We had some fun after with a nice dinner, a walk around Yerba Buena after dinner, and nestled into a smaller quieter bar followed. I am abstaining from any alcohol as I don't tolerate it well and don't have any appetite for it, but gladly had some nice looking mocktails and we got to visit and have a nice time.

The visit to the surgeon was a key step in my ongoing treatment plan for the months and years ahead. The facility and intake was super nice, and the receptionist was experienced, and so kind! The surgeon did an excellent job with being thorough, reviewing my case currently and even historically, and explaining what's ahead more so than has been done so far.

All of the moments of this journey matter!

Meeting the Surgeon in San Francisco

The visit to the surgeon was a key step in my ongoing treatment plan for the months and years ahead. The facility and intake was super nice, and the receptionist was experienced, and so kind!

What the Surgeon Said

During the appointment, the surgeon reviewed all of my recen't scans (MRI, CAT and PET), this hadn't happened fully by my oncologist yet, so was a welome and thorough review of my case. My oncologist had very recently shared with me this was way more advanced and spread throughout my lymph system based on a written radiology summary, than the surgeons more thorough assessment that two key and large lymph nodes are prevalent, but it's not spread as previously thought. What a HUGE relief!

I hadn't previously shared this news, as it was too dismal to even think about it's implication let alone share it widely until I found a way to have my scans more thoroughly assessed and see for myself. I have also paused writing this update, as understanding and processing the last two weeks have provided uncertainty, some good clarity and shifts in uncertainty and direction. There is positivity, and also realness to the outlook and fight ahead.

I will share a lot here, but there are things I will reserve as they are just too personal or sensitive to the specifics of my case, but there is a LOT to still share and so glad you are here to share in that journey and further understand. Hang on tight and I will too.

We now know this is Stage 4 Cholangiocarcinoma

I am disappointed this was not caught early, I was proactive, I found it when normal Dr.s visits and blood tests didn't detect it. We found it even though it was the last thing I even gave a moments thought to wether I actually had cancer. We don't go into our screening appointments thinking we have cancer, It was the same.

My oncologist had read just the summary of scan results that it was spread in my lymph system from chin to waist, that it was fully metastatic spread, even though my other organs are clear. You can imagine the prognosis and treatment options are much more limited should that have been the case. This is not a slight to my oncologist, he is not a radiologist or scan specialist, and he read the scan report as it was written. The surgeon was able to read the actual visual scans and images more thoroughly.

I do have two large lymph nodes tangled up in the locations of the liver and just outside it, so much more a local spread. We would prefer no spread at all, but I can't tell you the relief that it wasn't as far as previously communicated . Maybe imagine a door either wide open with options, or narrows quickly with these different forms of news.

Options assessment: The surgeon having reviewed my scans with me, went into what needs to happen with each treatment including my current treatemnt, options for treatments at each step, and assessments along the way

Treatment adjustments: Imagine one of those Yes/No flow charts, each next step, is determined on the progress of the step you are in. Hope for ALL YES's along the way.

• I am not a candidate for liver transplant

• I am operating potentially on 20-30% of my liver capacity. My liver is working very hard to just keep up with daily activities and keep my liver enzymes normal before we started treatment. Treatment impacts this too, but I am not jaundice!

• The current treatment of Cis-Gen-Durv's goal is to shrink the tumor as much as 30%-50%!!!

• Potentially shrinking the tumor enough, as its inhabiting the majority of the center/and thick side of the liver, we are hoping for a resection surgery that would take 60-80% of my liver and the darn thing will still regenerate! We wish the tumor was smaller or on one side of the other versus in the middle of everything, as where it is now does complicates things.

• A resection surgery gives me a 70% chance of buying me a 5 year survival or longer. Don't please don't dispair if I don't get a resection surgery as I have outlined more below.

The Latest Genetic Test - The Tumor

I have been waiting on my genetic testing results. Genetic does not always mean your germline/inherited DNA makeup of who you are. This test is different and I'll explain. This test is by Caris Life Sciences in Tempe, AZ, and I got to work with them for 8 years in my previous job at Agilent in Clinicial Genomic Diagnostics, Cancer and Inherited Diseases. They test the blood and/or the tumor tissue to know the mutation of the actual tumor or disease. Your Dr. has to order this one, because you have or are suspected of having cancer. I have a favorable mutation called FGFR2 Fusion that is well studied, and has therapeutic clinical trials and targeted therapies targeting the actual mutation and associated molecular pathways versus a general chemo and immunetherapy I am currently on.

I got the right mutational Bingo card for desirable mutations to have. There are targeted therapies available and many additional treatment options. There can be many different genetic mutations for any single and same cancer type, and these mutations or body makeup can determine how one person responds really well to therapy for side effects, lifestyle and success of therapy. As a friendly tip, even though two people can have the same cancer, never compare two different or same cancer fighters to the other. I hope that helps explain why. We do like encouraging stories though!

Your next question is like mine, so you're going to transition to an available targeted therapy right?!

• From my own research and support groups, this is not immediately likely. I am on a good therapy that is the first line for nearly everyone with this form of cancer. If I respond well, it could shrink this tumor 30-50%, that's very significant. We gotta wait and see, and hope that it does the job!

• I know, well... but...targeted is so much better right?! .... good yes, 100% success, not for everyone. Don't leap frog a good lilly pad, and exhaust what could be good options too early.

• So therefore, stay the course, but know additional therapies are available should it come time I may need them.

• Each therapy and option buys me time and longevity. Each Yes/No along the way are going to moments of miraculous prayers, positive thought, medidation, energy you believe in, I'll take it! There will maybe be disappointments too.

• The surgeon has additional options too, not just drugs, not just resection... I may need some help in addition to drugs to help shrink a tumor, a pesky lymph node, or contain a spread. So here are those.....

  • Histotripsy is a noninvasive, incisionless cancer treatment that uses focused ultrasound waves to mechanically destroy tumors. It does so about 3 cm at a time, so it can't take the whole thing at once.

    • Video, this is my surgeons page, and under the About me section is a. video summarizaing Hystotripsy https://www.sutterhealth.org/find-provider/dr-casey-j-ward-1046250824

  • HAL - Hepatic Artery Infusion (HAI) therapy delivers medicine (chemotherapy) directly to the liver through the hepatic artery.

    • Video: https://vimeo.com/954815150?fl=pl&fe=sh

  • Y90 Radioembolization - In Y90 radioembolization, a radioactive substance called yttrium-90 (Y90) is loaded onto microscopic bead like particles of glass or plastic resin. These particles are injected into the blood vessels that feed the tumor.

    • https://youtu.be/7UPeCSPX1Lw?si=4FnyFd9Tb-UZrQ0U

  • There are more, and the Cholangiocarcinoma Foundation (CCF) has a great page that has more description on treatment options if you want to learn more about each -

    • https://www.cholangiocarcinoma.org/treatment-options/

So those are options along the way too in addition to targeted therapies along the way. Each option can extend my timeline, and we are hoping for a looonnnggg one, that is happy, healthy and postive!

The surgeon was excellent, thorough, and kind with saying what needed to be said. He is even open to additional 2nd opinions which I will likely seek out at UCSF, Stanford and MD Anderson He outlined what needs to happen to be considered for resection, and options for treatment if resection should not be possible, so we've got options along the way and it's a good thing . This is not a sprint, this is a marathon, and thank you for being here for the journey.

We will have a better idea whether resection is possible in October or November with a scan. I kindly won't share dates here, as there will become a scan date yet to be scheduled and dates may shift (there's a word in the online threads called scanxiety), then the radiologists report, and then a Drs appointment to schedule and review...it will be a process. This also all follows 16 rounds of infusions. I hope I will be able to share more before Thanksgiving of the success of the treatment I'm on now. There will be smaller updates along the way between now and then. I also know I'll just need time to process.

Goal: Resection Surgery!!!!!

Looking Ahead

But here's the real rub, and we'll say, 'You've got to be #&%$ kidding' and I agree. I haven't been in a hurry to write some real stuff for reason. Surgery is as close to curative as we can get, but this cancer is not very currative overall. I have not lost hope and am very aware of the outlook. The surgeons appointment was unknown what I would expect, and grateful that surgery is an option with the the more limited lymph node spead, I was nearly euphoric walking out of that appointment with relief.

Hope and prayers matter to the last fiber of my soul but this is very real in such matters... I know. Kindly, it's just not something I will talk about because we are leaning towards hope and longevity.

There are folks that have made it beyond 5 years, and surgey gives me a 70% chance of 5 years. It's a gift for a longer time to plan, enjoy time and cherish visits.

I will also get to know those that have been fighting before me, and their journey through the Cholangiocarcinoma foundation for whom I've already been in touch.

Link: https://www.cholangiocarcinoma.org

Even with surgery, there will be continued mop up therapies, long term monitoring and even possibilities for recurrence. Research based papers outline all the cases over years of following 100's and 1000's of patient outcomes based on stage, mutation, therapies, surgeries and longevity and I can tap into all of it. It gives me the edge to seek out and ask for the best of every option along the way and nothing less than that.

I still won't give this an estimated date, or prognosis. We don't know and will go after this with the longest longevity possible. As my scientist and friend Art that is fighting this same cancer diagnosed in Sept 2025 , and we worked together in the lab 20 years ago said, a year from now, that that new drug or therapy might come to market that will become ours to have. This journey will have its highs, lows and breakthroughs and we're here for it!

He had resection surgery just this Monday in San Francisco and prayers for him that it has gone as well as possible. The surgery anticipates a weeks stay in the hospital. He has been so kind to share his journey with me so far and gives me great hope my journey will follow as well as his has. It was just by coincidence I found the CCF foundation and that he was selected for a video testimony conference seminar in Salt Lake city the day after I found out my tumor was positive for cancer.

The Latest Infusion Experience, the IIIrd

Yesterday, I received my latest 3rd infusion treatment. This session was only 6 hours of the treatments so far and started at 8 a.m.

I was able to catch the commuter ride to work with Alex in the morning, and got me there well in time. Another friend in the area is starting nursing school in August nearby, and was in the area for getting those details in order, so was able to bring me home at 2 o'clock! The timing all worked out perfect! I don't ever know the exact time when I'll be done in advance. 6 hours minimum, and up to 8 hours is what's been experienced so far.

My next infusions are Tuesdays, June 16, June 30th and July 7th. I will update my calendar on this page to reflect that - under How Can I Help Tab.

I have a blood test about 2 days before each and every infusion. This checks my immunity, blood levels, liver enzymes and electrolytes like salt, Magnesium and Potassium. Each of these levels can change and indicate I may need a boost in any of these levels in the infusion appointment or even stop or reduce the treatments if I go into a danger zone. Did you know if my liver enzymes escalate too far, it could result in a chemo-induced hepatitis? Gack! This was mentioned to me last week, and definately gave me anxiety before this round of chemo as it could have been cancelled. My levels are elevated, but no where near the cancellation zone. Whew!

On the way home yesterday, was the best I have felt so far after an infusion. I had parked my car at my friends becuase we left so early to get to the appointment. My other friend that brought me back, I had her drop me and I drove the rest of the 5 miles home! She followed me out of precaution, and stayed with me for a bit. We even planned a little mid week trip in July before she starts school, I can't wait!

I got in a better part of a work day yesterday during infusions, and will today as well.

From the last two rounds on Tuesdays, I begin to fade off Thursday morning to mid-day into the woozies that is fatigue, loosing cognition and basic coodination skills (drunken toddlerism). This includes eating every 2 hours but am abundantly grateful for not being nauseas. Other side effects have been the night of chemo and the night following, terrible insomnia. It's not even a toss and turn, your just awake. Last night I was up until 3 am, snoozed till 7 am and am still very awake. Naps are likely. Also some inside jitteriness, sweating, and just a little numbnes in the fingers and toes, this is a neuropathy we have to closely watch. All quite minimal so far, but this is treatment 3 of 16 that gets me to October and will perhaps get cummulative. I hope it stays minimal!

This has been a long meaty one.... but there's more, positive and fun to be mentioned. Stay tuned....