My experience and being my own advocate

[Captsquid2u]

I was diagnosed with stage 4 advanced prostate cancer , Mets to the bone and lympnodes. This was approximately six years ago. I’ll be 73 in July. Had my biopsy done at NYU Langone, my psa was 23. I had been at a steady 11 for a year. My primary Dr. wasn’t too concerned. They called wishful waiting, or something to that effect. A week after my biopsy I went to pick up my biopsy report, that’s all I received! They told me I had to wait till another week to meet with the Dr. after receiving the paper, hard copy report, I stayed up all night interpreting all the medical terms. My entire prostate was perineutal, idk if I’m spelling it right. But my prostate was on on the verge of being completely cancerous. I had two bad cores the worse near the base of the prostate. When I met with the Dr. they wanted to remove my prostate. I thought this over and with the research I had done replied No! What I had concluded whether my interpretation of the biopsy was correct or not. Was that if they removed the prostate there would still be cancer Mets below from where my prostate was, calling for radiation, incontinence , etc. I have always been a firm believer that it’s my body, and I’m my own advocate. RWJ had me in the grave two years ago. I get a Lupron injection once every three months 4 pills, Zytiga with prednisone a day. My PSA has Been below 1 or slightly above that. Three months ago it started to climb and was 2. I , on my own , began taking 6 250 mg of Zytiga and in a month cut my PSA in half. Soon another month I’ll have it checked again. For pain, vertigo, General mobility I’ve been taking hydro o done 10 mg 4 or 5 times daily as needed. I exercise a lot, but am still afraid to ride my bicycle. I use to ride 40 miles a week. I miss that! I have no sex drive. Eat healthy, and wrote my first novel “slowing Down Too Fast”. And trying to get it published. Well that’s all for now. Had a catheter in my bladder for four years and took that matter in my own hands Not listening to the urologist. Now I piss like a 16 year old! But that’s another story. This one already is quite long. Cheers. CaptSquid2u aka Dennis Savini

[Shooter1]

After researching treatments, often you will be able to choose what is right for you better than your drs. But they still have a lot of knowledge that you can use to make your final decisions. Being your own advocate is important, sometimes no one else will be.

[Magnus1964]

You made the right choice on the radical prostatectomy. Keep up the good fight.

[Captsquid2u in reply to Magnus1964]

Thank YOU Sir Magnus! You too!

[rogerandme]

Bravo for taking control. Once I got over the shock of DX I was ready to fight... Good luck to you...

[CAMPSOUPS]

Thanks I enjoyed your post. Upping the Zytiga is interesting.

Please keep us updated on the results.

[Captsquid2u]

I will most definitely!

[Walkingwell]

Well done and good luck to you. Interesting to read all the details, thanks.

[d3is4me]

Great to read your journey FIGHT ON Gives me inspiration to continue making my own decisions

[addicted2cycling]

“We are each an experiment of one.

A unique, never-to-be repeated event.” -- Dr. George Sheehan

Congrats for Captaining your ship as you see fit. Good Luck and hope you can get back to bicycling.

[MateoBeach]

Welcome Dennis. Thanks for sharing your story.

[AussiBrian]

Welcome to the brotherhood, Brother

[Cooolone]

Glad to hear success!!! And wishing you continued success as well... And thanks for sharing!

Best Regards

[Scout4answers]

Welcome aboard Captain. You have found a ship where a number of us are trying to manage our own voyage down the PCa river. Some would say it is a ship of fools but I for one have managed every other part of my life quite successfully, so it is just what I do. Lots of good info. on here.

Knowledge is Power.Interested in knowing what led you to taking 6x abiraterone?

I just reduced mine from 4 x to 1 x (250 mg total) per day with a low fat meal because my liver enzymes had increased to 3x normal after 6 months of use.

Are you getting a Complete Metabolic Panel every month?

[GoBucks in reply to Scout4answers]

Scout, did you know that taking 1 250mg with food is the same as taking 4 250mg on an empty stomach? I learned that here, probaby from something TA posted.

[Scout4answers in reply to GoBucks]

Yes, almost every thing I know about PCa I learned here,

why this forum is priceless.

[Captsquid2u in reply to GoBucks]

I take 6 Zytiga pills from 4. I lowered my psa in two months! By half. And 6 on an empty stomach. Not four!

[GoBucks in reply to Captsquid2u]

Doesn't your scrip run out early?

[Scout4answers in reply to Captsquid2u]

What made you think that would work?

[middlejoel]

Interesting. Are you under thecare of an MO? How were you able to increase the Zytiga dosage if not? Good work

[TLate]

I would be interested in how you improved your bladder fuction. I still take Rapiflo to help with urination and would like to get off it. Had radiation and just finishing up 2 years of lupron injections.

[Captsquid2u in reply to TLate]

I juiced a whole watermelon rind and all daily, after reading the rind contains similar benefits like viagara. That an kegel exercises and pelvic exercises like I was screwing.

[j-o-h-n]

Greeting Capitan..... Why don't you copy and paste your post in your bio for future reference.... it will be helpful that way... BTW it's voluntary..

Bike I assume it's a motorcycle..... Let your girlfriend ride it with you sitting behind her..... would seem like a better ride 🤡to me anyway.....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/24/2022 3:55 PM DST

[Captsquid2u in reply to j-o-h-n]

No GF! Bike is my Peugeot Mixtie

[j-o-h-n in reply to Captsquid2u]

Better idea..... leave your French Mixtie alone..... get a Whatever and ride the Whatever!

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/24/2022 7:24 PM DST

[ukulele_grandpa]

Very interesting Capt. I admire your grit. I'm 86, prostate removed 17 years ago. psa went from 6 to so low I didn't think about it after a couple of years. 5 months ago my right hip was bothering me. I'm with Kaiser. After a blood test, psa up to 15 and several types of scans they told me I had a 3 inch tumor inside my hip bone with prostate cancer cells spread around my body...so they called it stage 4 and gave me 5 radiation treatments on the tumor and put me on Zytiga and Prednisone. It's been about 4 months. Just had ct and bone scan and am waiting for Dr. appt to explain my progress if any. I'm not to sharp with the acronyms so didn't use any. Hey, I'm an old man. I get confused! 😜

[Boywonder56]

Gotta tell ya capn.....you look strait out central casting.....congrats on your taking the prostate cancer by the horns......and winning...bw

[Poowater]

Being your own advocate must be based on solid research. Other opinions on any doubts must be obtained from oncologists. Be very wary of radiologists, remember its a thriving business with little positive outcomes. I favour ADT plus Zytiga with doxetaxal. Be very wary of layman and Hocus Pocus.

[jcoil]

I am being the advocate for my ex-husband, DC. I’m reading this blog and anything else I can get my hands on so I can be prepared for the next course of action. It helps me ask the right questions, suggest alternatives and calms my fearing heart. Thank you for your post. I will keep the increase in mind when/if we get to that point.

[lookingforamiracle]

I've had two TURPs and my bladder scraped to get/keep the pee flowing. Still have my original equipment prostate and peeing fine at the moment. Well not this exact moment. The cat was already out of the bag and in lymph nodes when I started 3.5 years ago though, and I wasn't offered prostate removal, but he seemed really keen on castrating me, which I declined more than once before I found a new urologist. That zytiga experiment is interesting. Maybe bigger is better, but I put off taking the 4 until it really looked like the best idea to me about six weeks ago. Zytiga with prednisone was first recommended by my doctors 2 years ago with rising psa and looking castrate resistant. I am very concerned of the side effects of disrupting another gland, and I don't know yet if it's gonna work. I hate these tradeoffs to keep on going. Like you, capt, I listen to what my doctors have to say, and get the benefit of all the experience of the men and women of this forum, but ultimately I am making the decisions about what and when. I have to say that there is an element of intuition in my process too. And I decided early on this road that I will look at this as an adventure. This attitude makes a difference to me. I love that you wrote a novel. I wish you the very best.