u/GeekTX

I can't be the only one but I haven't seen any posts talking about it. FU5 didn't do me any good so I was put on to Gem/Nab and started OptunePAX a month later. I am now 5 months of 3wk on / 1wk off with chemo and my tumor is shrinking.

What I am noticing though that my fingernails start with what looks like a small bruise about 1/3 into the nailbed then starts expanding in all directions. Research says that this is a normal side effect of chemo and I am sure it is but ... I don't like it. :D As if we like any of this. LoL

My big problem here is that I work in IT and am on a keyboard all day long and this is having a severe impact on my ability to type. Are there any solutions or do I just deal with it and keep the nails cut as short as possible until they are gone or grow back and reattach to the nailbed?

I have been an OpenAI customer since the day they opened up to the public. Chat and API with a fair bit of use. I have been using Codex Oauth without a problem but Codex is really wearing my patience and want to try Claude. I have it connected and routed to my coding agency and my first request hit 53% session limit on the Pro account.

I dropped from Opus to Sonnett at that point made a repeat request to test between the two and that took me to 76% on the 2nd request. Only 53% difference in models. I then asked with Sonnett to complete the work from the first evaluation request and it completed it in another 23%.

How are you managing this? and does the pro account lack that much that I should go to the 5x plan now?

I want to state first that my body, my journey, my everything is unique to … well … me. There may be some similarities that you can draw that may align with your journey. I am probably going to push a few limits with my post and statements but I want to be 100% transparent. I have told my care team, across the board that I am willing to talk to anyone about anything about any part of my journey with the prayers that I am able to affect even 1 person in a positive fashion. This is a rather long post that I hope you will read through.

I am a man who has a deeply embedded Christian faith and give all Glory to our Lord and Savior Jesus Christ. I will not, on the other hand, discount modern medicine and practice. I believe with all of my being that the Great Physician is guiding my care team in all ways.

So, without further ado. My story, my testimony, My Journey.

A little background on me and my world. I work in the IT segment of healthcare … more specifically I create and manage IT departments in rural healthcare districts. I have been involved in IT for 45 years and the healthcare side of things since 1997. I have had a life packed with various traumas from losing my mom when I was 21 to murder, living through a pedo step-beast, and losing my son to suicide. I have raised children for the last 37 years of my life. I have housed several beaten and broken families to domestic violence until they could get back on their feet safely. I do not care for and have never asked for any recognition from anyone other than God. I was kind of an asshole the first 20 years and did some really dark shit and got deep into narcotics … late 80’s narcotics … not this stuff of today. I kicked narcotics by 1990, liquor by 1996, beer by 2011, and cigarettes took me the longes at 38 years and finally quitting on 10/28/2015 @ 8PM. I have a pic of my last ever cigarette.

Most of my life I have been able to afford and take care of my healthcare needs out of pocket and as needed. Sure, being in healthcare, I knew that there were some tests and visits that needed to be had that were eventually going to cost me real money. My first real surgery came when I blew out my right meniscus and ACL. Fortunately by this time in 2016 I had insurance because my wife had needed a spinal fusion. Her previous discectomies I was able to cover myself but the fusion was by order of magnitude more expensive than I could afford so insurance was my cheapest way out. Since then I have learned the value of the expense and these past 6 months has been no different.

Now for the meat of this post.

I was onsite at 2 of my facilities last year about this time in TX. I am usually remote from CO with the exception of some onsite elbow rubbing. Right before I came home I discovered that the community with the first facility was experiencing an outbreak of new and untestable COVID variant. I stayed isolated and went home. I drive on Fridays and by the time I made it home (14 hours) I was feeling pretty good, a little tired but good. About 2 - 3 weeks later I am still struggling to breathe. I go to a local urgent care. They ran a few tests, checked my BP and recommended that I follow up with my primary. I giggled and thought … the whole reason I am here is because my primary won’t see me for 8-10 months. I ignored that and went on with life. I had some C suite changes in a facility in July so I found myself back pretty quickly and exposed to yet another new strain of COVID. This time wasn’t as severe and I opted to ignore seeking professional care.

Let’s fast forward to October 2025 and the day the music died.

On Monday October 20,2025 the administrative assistant at one of my facilities announced that she was going on vacation. I announced that I was experiencing an elephant sitting on my chest and I needed to go to a doctor. I again trekked down to the same Urgent Care. I was hoping to get a diagnosis of long-COVID, walking pneumonia, or bronchitis …. Hell, I would have taken the flu or similar. After 4 EKG’s, 2 lung x-rays, and a ton of BP checks that were all shitty … I was told: You need to pick your favorite ER and either you go straight there now or we call an ambulance to take you there now. By 12:30AM the next morning my BP was at 238/184 and they were struggling to keep it down and I felt as though I was struggling to hold onto consciousness, if not life itself. I was ultimately placed into the cardiac wing as they fought to find the right combinations of drugs for my BP. I had a chest echo, abdominal and legs ultrasound, angiogram w/out stints (not needed), chest/abdomen CT, PET/CT w/ radiation, and an endoscopy with a biopsy. There were a million different labs and other random shit that transpired over the course of those 4 days. At the end of the day I meet Dr. Benton with Rocky Mountain Cancer Centers who is coming in to tell me that through all of this they have discovered that I have a 2CM mass on the head of my pancreas. I was tired and ready to go home and already terrified that my heart was failing. He tells me that they are going to be my caregiver going forward and that I am in good hands. Holy shit, I could have never guessed just how good of hands I was being placed into. He has me setup with one of his providers as well as a surgical oncologist.

2CM …. Oh God please, what do I do? How do I react? Do I kick and scream and curl up like a 56 year old infant and just bawl my eyes out? I prayed, for the next 48 hours that I was confined to that bed, I prayed. I need to face the reality that is Pancreatic Cancer. I need to understand things like survival rates, short, near, and long term. I need to understand the treatments I am going to go through and what that road before me will bring. My wife, my kids, my grandkids … damn it … sofa king much to try to keep in mind.

The day before Thanksgiving I was given my chest port. The next Wednesday I started FOLFIRINOX the following Wednesday and underwent treatment biweekly for 4 rounds. We did a PET at that time and FRED (what I named it) had grown to 4.5CM x 3.6CM. This was devastating information. I thought FOLFIRINOX was the most aggressive and effective treatment method … it failing to slow or stop growth scared the absolute shit out of me. Everything I had just gone through and now none of it is worth a shit …what a blow to my heart.

I’ll pause her briefly to discuss my daughter and her employer. When everything happened she told her boss about my situation and that she was going to need to take some time off on short notice to help me take care of things when my wife wasn’t/isn’t able. She works for NovoCure and her boss immediately told her about the clinical trial they were in at that time for their OptunePAX product. My oncologist wasn’t real interested yet about me going into a clinical trial and I am not sure that I was really ready.

Now we come back to the nightmare scan with over 100% growth. OptunePAX is no longer in trial and has been approved by the FDA as the first new pancreatic cancer treatment in 30 years. My daughter takes the bull by the horns and makes things happen. She started making calls and dropping numbers and next thing I know, not only is my oncology team getting trained but I am getting a prescription. That was some of the best news I had gotten so far.

At the same time I decided to try everything I could get my hands on. I am not saying that anything I have taken is a miracle cure or anything like that. I am saying take my testimony and make your own decisions. Basically, if we read that it had a positive effect on cancer, real or perceived … I am taking it. Note to MODS: If y’all do not approve of my list of alternatives and want me to remove it, I will oblige but please don’t take my entire post.
My list that I take daily: Fenbendazole, Ivermectin, Boron, B12, Fluvic acid, dandelion root extract, sour sop, burdock root, RSO (1.5g), and full spectrum CBD

1 month into all of that and changing to gemcitabine + Abraxane I had a CT. The CT at that point only indicated that everything was stable … no growth … just stable. By this time the OptunePAX has now delivered and my wife and I are getting trained on all the gotchas and how to change out the arrays. My daughter joined in on the fun and has been a tremendous help to my wife. I have been wearing the device, doing chemo and everything else since then. My oncology team is aware of what I am doing and approves of it all. I kept all of this up until 4/21 when the Good Lord decided to put me in the hospital again and force everyone to test and question everything.

For 9 days I laid in the hospital terrified of what is happening to me. Many sleepless nights were had and having ample conversation/prayer with God. Was my cancer growing and was I progressing from early stage to 3 or 4 or even terminal … I just wanted to know and understand and feel comfort. I had chest and abdominal CT, ultrasounds, blood tests, and a billion other tests. My fever spike to 102.3 and that is when they iced me down. Luckily the fever never peaked like that again and start staying lower when it did come up. Infectious Disease was going nuts trying to figure this one out … just the like the cardiac folks were going nuts in October trying to find the mystery BP issue. On Tuesday he decides it is time for a PET w/ radiation. He needs to get a better look into my sinus cavity and see if there is an infection there as he is running out of options. The PET was ordered and completed, to everyone’s disbelief, in the hospital. I was done with the scan and had ordered lunch already when the hospitalist came in to tell me the PET had been ordered. I got him caught up and he came back a few hours later to give me the news.

He tells me, and the ID doc does as well, that they cannot find anything in the PET that would indicate as the source of the fevers. He continues on to look over the rest of the read when I finally press … Good God man … tell me about the cancer … I need to know. Has FRED grown or shrank? Can I celebrate in any fashion? And then he reads (verbatim from the scan): “ The previous mass in the pancreatic uncinate process and previous associated intense hypermetabolism have almost completely resolved, with isoavid soft tissue in the mass now measuring approximately 2.0 x 1.0 cm SUVmax 2.4 previously 4.4 x 3.6 cm SUVmax 6.0. The previous suspected peripancreatic nodal metastasis has resolved. No pathologically enlarged or hypermetabolic abdomenopelvic lymph nodes are identified. No uptake is identified in the abdomen or pelvis to correlate with fever and nausea.”

There are statements of non-concern about reactive/treatment related stresses near my liver and lymph node in my neck … all likely related to the fevers.

We had a follow up with my oncologist today and we understood correctly what we thought we understood. I haven’t won my war yet but I have had a some very successful battles and can see a day in my near future where I may have beaten this things ass.

It is late in the day for me and I am tiring so I am going to post this and go to bed. I will happily respond to any questions anyone has about my last 6 months.