Amusing Story

[Javelin18]

I saw my MO yesterday. Since UCLA is a teaching hospital, I usually talk with a resident, or the physicians assistant, before the doctor comes in. This makes time with the doctor more efficient, and helps with teaching.

Yesterday she sent in one of her students to talk with me. Along with the usual questions they have about my symptoms, she asked if I had any questions. I told her I wanted to talk with the doctor about whether it was better to continue aberaterone or switch to enzalutamide while doing Lu PSMA, and discussed creatine for T cell energy in the hostile tumor environment, going into detail about the reasoning.

When she got up to talk with the doctor, she had a bit of a dazed look on her face. I asked her, “How was that?” She said, “They told me you were detailed, but I didn’t realize what they meant. I’m impressed with how much you know about your disease. I learned some things from you.”

The doctor came in and asked my wife how she thought I was doing, and my wife told her that she noticed I get confused when trying to remember when to eat before and after aberaterone, and wondered about me having brain fog.

I then talked with the doctor about creatine and as a T cell energy source with the tumor using glucose and ATP. She said, “You’re still sharp, even if you can’t remember the pills.”

[Magnus1964]

The more you know...

[noirhole]

Nice. Best way to live longer is be your own advocate!

[Hidden]

Great post ! I take 30 pills of nutrients per day . Sometime I forget the rountine . But after six years it is mostly like ground hog day . More of the same . I never really took anything before dx . If all that you’re forgetting is the before or after meal pill Sometimes then I think it’s minor . UCLA rocks .. Good luck ! Take care .

[Javelin18 in reply to Hidden]

Thanks, I’ve always been bad at remembering pill schedules. Getting lots of practice now. I’m also not bothered by needles after being poked about a hundred times in the last 10 months

[Hidden in reply to Javelin18]

I am hip about getting poked and prodded . I still don’t like needles much .

[Javelin18]

Thanks for the comments. I’ve got a reputation that proceeds me at UCLA. Usually new doctors have been warned to be ready for my questions. Some of them start with, “So I hear you’re an engineer.”

[Hidden in reply to Javelin18]

Haha😂👏👏👏 keep em on their toes Engineer!

[Hidden]

I have had the same experience talking with Doctors in training sent in to talk and I guess to get used to talking with patients. I think we advance prostate cancer patients get a laser like focus on our disease that is learned, and we get better with time. Except I do get brain fog at times… like forgetting the cartop carrier is on and driving into the garage, and not pulling into the garage far enough and closing the g-door, or taking like 5 seconds to remember what month it is.

[spencoid2 in reply to Hidden]

My brain fog is essentially gone but I sleep very little and can be very tired. Keeping up exercise helps but I recently had an occurrence that baffles me. I did not seem unusually tired and was listen to an audio book while finishing the last 3/4 mile on my driveway after driving most of the day. I just sort of spaced out an ran off the road. Was lucky that the Sprinter stopped at a 24.6 degree angle because the roll over point is said to be 25 degrees. No one was hurt and it was just $800 to recover the vehicle with no damage. I would love to learn what I did "wrong" so it can be avoided in the future. I sort of think that I had a visual hallucination. I have not been seeing very clearly and do know of a few hallucinations one of which was very atypical. A big solid block of solid white suddenly appearing. I had stopped taking Lexipro because it was giving me really bad nightmares and maybe that was what did it. I seem to be doing OK off Lexipro and am trying Pedicularis instead. Wish I could figure out how to get some sleep. Non of the usual stuff has worked so far. The nightmares have changed into repeating less threatening dreams. I had previously tried to take the top off our new travel trailer not realizing how low the branch was just 1/10 mile from home. I was totally exhausted at that time and swore to not drive when exhausted. I guess I let my guard down when so close to home. I thought i had learned my lesson and am still baffled at what happened when I nearly died in a potential multi rollover.

[Javelin18 in reply to spencoid2]

Sorry to hear about your accident, and glad neither you or anyone else was injured. . There are a lot of drivers in the LA area that either have poor skills or are sociopathic. I used to be able to react to threats coming from four directions, but find myself only able to react to things from two directions. I’ve had some close calls where I only noticed one driver doing something bad and almost got hit by someone coming from the other direction.

I worked on a navy base that had regular safety briefings in December and June. They talked about operational risk management and assessing your ability do a long drive before you start. Saying if you realize your going to be going to be tired, to plan your rest ahead of time.

Trying to heed their advice, I have my wife drive to appointments in LA. It’s hard to give up control, but I realize that I’m not up to it most of the time. I’m blessed by her patience with my back seat driving.

[spencoid2 in reply to Javelin18]

When I ran under the tree limb I was driving an unfamiliar vehicle and was dead tired. Fortunately all I did was rip the rack and ladder apart because I stopped before ripping off the AC. Fairly easy weld repair, got to practice my TIG But the recent accident I was not tired and was listening to an audio book. I would have had my husband take over if I felt in danger, I didn't. And it was just a slow drive off the road nothing sudden. The only thing I can think of was an hallucination. My vision is getting strange too. Had eyes completely checked and had brain MRI and all looks fine. Seeing a neurologist soon, maybe they can figure it out. I am reading the book Hallucinations by Oliver Sacks. A lot of interesting information. Maybe I should take some LSD to clear out the hallucinations. I have some that I was planning on microdosing with, maybe should macrodose.

[Javelin18 in reply to spencoid2]

Can’t offer an opinion on that. Way outside my knowledge base

[Hidden in reply to spencoid2]

Go macro!✌️

[j-o-h-n in reply to spencoid2]

I've mentioned this several times. Want to get to sleep fast? Close your eyes and start building a log cabin (by yourself in your mind) from scratch. From the underground foundation to the roof. Be detailed and use any tools or equipment you need to complete the house. I never get past the first floor...... ZZZZZZZZZZZZ

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 11/20/2021 5:37 PM EST

[spencoid2 in reply to j-o-h-n]

indian warrior seems to maybe help. i hope i can find my stash of herb. i know i harvested a lot but need to find it. recent crops are bad because we took a fence down and the deer eat most of it. i can get to sleep pretty easily by listening to piano music but then i wake up pretty much on a 1 hour timer and getting back to sleep is a challenge.

[Hidden in reply to spencoid2]

Please? No more almost flipping the sprinter . Close call. 😳

[spencoid2 in reply to Hidden]

never again

[Hidden in reply to spencoid2]

👏👏🥳🏋🏽‍♂️

[ellie2211]

What did your doctor say about switching from Abiraterone to enza?

[Javelin18 in reply to ellie2211]

She wants to continue with aberaterone as an adjunct to the Lu PSMA. She would like to keep enzalutamide in reserve for later treatment.

[cesces]

What about creatine as a T cell energy source

Is that a thing?

How does that work?

When is it worth it?

[Javelin18 in reply to cesces]

Nalakrats started a discussion of this a few days back. There was a study at UCLA in 2019 on mice.

newsroom.ucla.edu/releases/...

From what I have learned of the immune system there’s a hostile environment in the tumor, where the cancer cells use available glucose and ATP for energy, leaving little for the T cells. The study implies that in mouse model that creatine is a fuel source available to T cells which prevents them from becoming exhausted.

Creatine is used for energy during muscle exertion, so it has been used for many years by body builders. Creatinine, a byproduct of creatine, is released when muscle tissue breaks down, and is measured as part of the comprehensive blood panel. It is related to eGFR as a measure of proper kidney function.

My creatinine is low and my eGFR normal, so it seems safe for me to supplement with it. My MO is data driven in her approach, and without data can’t offer an opinion on supplements, as long as the dosage doesn’t create toxicities or interact with prescribed drugs.

[Schwah]

What did the dr say about the creatine?

Schwah

[Javelin18 in reply to Schwah]

She said that she can’t offer an opinion without understanding interactions with other drugs and supplements. She said that I need to make sure I don’t cause kidney problems, which are shown in eGFR blood test.

She also prefers, from a scientific management standpoint, to not create measuring noise with multiple supplements interacting in unknown ways with prescriptions. She wants to see a direct cause effect relationship between the prescription and its effect on the cancer, along with side effects. I’m familiar with this as parametric analysis in engineering. You hold all variables steady, except one, to see the effect of that variable on the system.

Something new she pointed out was that supplements can change the value of lab results, further complicating readings.

[Seasid in reply to Schwah]

If you load up with creatine, your body will produce more DHT. It is so for the healthy population. For us on ADT I don't really know. For us DHT is not good. I think if you wish to experiment with creatine better follow your body DHT production. Before loading and after loading with creatine. This is how I would do it. Creatine is probably good for the immune system but maybe not for us on ADT with PC. That is why vegetarian food is good for you if you have PC as it is a low source of creatine.

[Javelin18 in reply to Seasid]

That’s interesting. DHT is synthesized from testosterone. My testosterone on Lupron was below 6. After adding aberaterone it’s below 6. I’m not sure I have any available testosterone to make DHT from.

It does sound like something to be wary of. I’m still wondering why I have any beard growth, albeit extremely slow, with undetectable testosterone. I believe DHT causes beard growth. I had the growth before trying creatine, and it didn’t seem to increase.

[Seasid in reply to Javelin18]

I am not a Doctor but I know for sure that DHT is very potent. DHT will push out drugs and stick to the cancer androgen receptors. I am really not a doctor, this is the best explanation I can provide. If you are going to experiment with creatine better make sure that your DHT stays low. I would test it before and after loading with creatine. That is my idea. My oncologist flatly rejected any idea to play with creatine if you have prostate cancer. DHT is very potent.

[Javelin18 in reply to Seasid]

I’ll try to see what I can find about creatine and DHT.

I would call what I’ve been doing as supplementing rather than loading. My creatinine level has been steadily below the normal range. I haven’t taken creatine regularly, because I have a hard time remembering to. When I did take it, I was taking the normal recommended amount on the package. This brought my creatinine to the bottom of the normal range.

The problem see with supplements that haven’t gone through phase 3 studies is that there isn’t a feedback mechanism to tell if it helps or hurts. I’m naturally leery of alternative treatments in general.

The flip side of the argument is that the standard of care for my disease stage is likely to lead to death. I’m working hard to understand new treatments that are in trials , but am willing to take some risk if alternatives.

[Javelin18 in reply to Javelin18]

Sorry for taking that dark turn. This thread started with a funny story. I try to stay positive in my posts, but I do have in the back of my mind what I’m fighting against.

[Seasid in reply to Javelin18]

What was your creatinine level before an after supplementation with Creatine with the correct units? I believe you should talk to your doctor about this. Connection between creatine and creatinine is maybe not so simple as you think. My creatinine levels are monitored to alarm my oncologist if the cancer is interfering with my urinary system. The other thing is if I eat too much slow cooked meat. During the cooking process creatine in the meat converts into creatinine but this is happening outside of your body as a direct result of the cooking. That is why I prefer to eat row tuna occasionally if I can buy some. Tuna and beef are full of creatine. Do everything in moderation and you will be fine.

[Javelin18 in reply to Seasid]

Thanks I will discuss with my MO. The readings surrounding the supplementation with creatinine were .55 , .6 and .65 mg/dl. I don’t recall where in the sequence I supplemented. When I did the comparison, I took 5000mg creatine monohydrate once daily three days prior to the blood draw. I didn’t take it the day of the draw.

I like the idea of seared tuna as a source. Tastier and no stomach upset. I have some bluefin tuna that my brother caught.

[Seasid in reply to Javelin18]

I buy some yellowfin tuna not very often and eat it raw with japanese wasabi made in Japan.

[Seasid in reply to Javelin18]

I am not too concerned about creatinine. It is good to keep on eye on if you are supplementing with creatine and to estimate your glomerular filtration rate.

[Seasid in reply to Javelin18]

I tested my DHT levels on 15/11/2021 and it was 0.2 L nmol/L

[Seasid in reply to Seasid]

The blood sample was taken at 8.40 am. The test cost maybe 100 Dollars but be careful with the price before you test as they could charge you 1000 dollars.

[Seasid in reply to Javelin18]

I think it is better not to supplement creatine as our bodies produce then more DHT and DHT is very potent. I think the best would be for us to eat vegetarian food with no creatine. I am not sure in this. That is why I tested my DHT levels. Maybe I will one day start eating more meat and maybe even supplementing with only 2g of creatine monohydrate a day. But if I will do it, I will test my DHT level again just to be on the safe side.

[j-o-h-n]

Next time charge the student(s) a fee........

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 11/20/2021 6:19 PM EST