Zaps

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bldoink
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Zaps

Postby bldoink » Tue Oct 03, 2023 1:32 am

I got my first zapping of 35 hits of radiation today (yesterday now). I had cancer in the margins when I had my RP some 12 years ago. My PSA has been slowly rising the last few years and finally made it up to 0.3, while not at all high it is too high when it should be zero after an RP. The recent PET scan didn't show any hot spots which is good, I think.

The oncologist said he thinks I have a 70% chance of a cure so not too bad. Life goes on, at least for now. The first zap wasn't bad. It only took about 15 minutes total and no pain so far. There was more pain on a previous visit (but not much) when they tatted me with three tiny dots for aiming points.

I hope I don't get more nerve damage. I've adapted to my current level of nerve damage. I'll be pretty bummed out if injections don't work well afterwards or if I get incontinence. Oh well, just another bump in the road I guess.

At 70 I've already outlived many of my peers. I suspect I'll out live a few more of them. I just got word of two more that are on their death beds now. Plus another just had a stroke and another has a serious leg infection from a very bad bone break. The old "dropping like flies" seems to apply at the moment.

I'm sorry if this post sounds depressing. I'm not at all depressed. A little melancholy perhaps, but mostly from hearing about my friends. There are some down sides to getting older, although it seems like I just graduated from High School a couple of years ago. The one guy has had such a bad streak. A divorce, a couple of DUIs (didn't handle the divorce well), an RP, and now a stroke, all in pretty short order. And he's a really good guy. If you want to send any prayers his way he could sure use them. You can refer to him as E.O. The leg infection guy could use some too. You can refer to him as E.D. (no pun). He's also a really good guy who very successfully turned around a very messed up life. He's been an example and inspiration for many.

Thanks for reading. I'll have to post something cheerful later to compensate.
R.R.P 2011 Mayo Jacksonville, Dr. M. Wehle. Not nerve sparing. C in margins. Radiation 2023, V.E.D, Viagra and PGE-1 (80mcg/ml) injections @ 8 - 14 units. Originally Edex20, then compounded PGE due to cost. Inject. 12 yrs. It works. Treasure coast of FL.

riseagain
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Re: Zaps

Postby riseagain » Tue Oct 03, 2023 5:36 am

God bless you and your friends. Keep having faith. I'm not to far behind you. A quote from the late Jimmy Buffet " Getting old ain't for sissy's"
65 yrs old. Married 38 years to an awesome wife. Implanted on 8/4/2022 Titan 24cm XL. Dr Hakky. Loving the implant so far.

ftwabeck3533
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Re: Zaps

Postby ftwabeck3533 » Tue Oct 03, 2023 7:30 am

bldoink wrote: My PSA has been slowly rising the last few years and finally made it up to 0.3, while not at all high it is too high when it should be zero after an RP.

The leg infection guy could use some too. You can refer to him as E.D. (no pun). He's also a really good guy who very successfully turned around a very messed up life. He's been an example and inspiration for many.

Thanks for reading. I'll have to post something cheerful later to compensate.


My RP was five years ago at age 63, while my PSA is undetectable, that's only as good as the last test result. And a heartfelt, "Thanks for reminding me". You are my Doppelganger. My inspirational "leg infection guy" is R.B.

Keep us updated, it's all cheerful coming from you. To quote my wife, "You're winning til you lose". You got this!
Born 1955, Erectile Dysfunction, Robotic Prostatectomy (Oct 2018, Dr Bugg @ UCA, Birmingham, AL), PSA<0.007, Trimix User (30 mg Papaverine HCL, 1 mg Phentolamine MES, 10 mcg Alprostadil per 1 ML. My dose is 0.16 ML)

Old Guy
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Re: Zaps

Postby Old Guy » Tue Oct 03, 2023 8:56 am

Wow, you got a lot going on. Glad you are not depressed with your situation. As you said, life goes on. For some of us anyway. Prayers for your friends, and a few of mine too. Got one friend just had heart surgery and is recovering.
Passing those birthdays brings new challenges. My doc just told me that my high cholesterol is due to aging, not my diet, so I told her I'll just give up birthdays instead of my junk food!
Hang tough is all we can do. Hope you have no more nerve damage and injections continue to work for you.
Waiting on your Cheerful Post!
Nov. 8, 2019
4+ years, Coloplast Titan OTR
Married 36 years to my beautiful young bride
Always here to answer questions if you PM me

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bldoink
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Re: Zaps

Postby bldoink » Wed Oct 11, 2023 2:24 pm

OK, a more cheerful post, at least a little, nothing exciting though. My friend E.D. (no pun) had his 2nd leg surgery to deal with the infection. It appears to have gone well and he is now out of the hospital. We're all very thankful. He can continue to inspire other men who've had troubled lives, which he's extremely effective at. He talks to inmates telling and showing them that there is hope, that they can succeed and have productive lives, that they don't have to be part of the crappy recidivism rate, that they can beat substance addiction. I'm very proud of him although I personally can't claim any credit for his success. He inspires me.

My other friend with the stroke I haven't heard an update on. Of the 2 guys on their death beds, one has passed and is at peace.

My zaps are continuing. I just had zap #8 this morning. All is going well. No issues other than regulating my colon and bladder. They want your colon empty and your bladder full, but not too full. Apparently a full bladder pushes other stuff out of the way and lifts up a bit so stuff not needing zapping doesn't get zapped any more than necessary. The empty colon is smaller and easier to get compressed out of the way by the full bladder.

Unfortunately in many cases, mine included, bowel issues come with ageing, as in constipation and diarrhea. Plus being a prior R.P. patient my bladder controls are as stellar is they once were. All of this leads to diet and timing issues to keep the technicians happy for my zapping visits.

The bowel thing I have worked out. I eat a small bowl of greens in the evening and some avocado on toast in the morning. That works! TMI?

The bladder part is even harder to regulate. I can drink the same amount of water at the same time every day but have different levels of pee on board when I arrive for a zapping. Sometimes too much and sometimes just right. Today too much. I told them I drink the same amount every morning and I don't know what else I can do. He said it also varies due to your hydration. I guess that will continue to be a crap shoot as I don't know how to determine hydration prior to my water (coffee, tea, water) consumption.

If you've read this far I'd wager you're having serious regrets huh! Sorry!

My appointments are were at 9:15am every weekday. I don't like to be late so I arrived a little before 9:00 every morning, allowing for unexpected traffic jams. They always take me pretty much as soon as I arrive. I thought that a little strange. I finally asked. Well it turns out the 9:00am guy was always late so they just switched us, but I don't know if they told him. What, so now I have to schedule to be there at a quarter till to allow for traffic jams?? Somewhere around that time school busses become an issue. Oh well!

Still here?

Anyhow, they finally got my records from Mayo from 12 years ago. Gleason of 7 with cancer in the margins. I haven't looked them over yet. Chances are I won't understand much. He said neither treatment or outlook changed based on those records. They look like they were extracted from microfiche. I didn't know they still used that stuff in 2011.

Well I said I'd post good news. I tried. My one inspirational buddy appears to be successfully recovering, one guy is now at peace, I managed to get my old medical records (I'm keeping a copy), treatments are going well, my beautiful niece got married to what seems to be a really good guy, I'm feeling pretty good, and my very long to-do list hasn't gotten any longer. Oh, and it's no longer pouring down rain every day.

PS: As to medical records. I now strongly recommend keeping your own copies of all of your medical records. You may need them later or even much later. Offices close, doctors retire, doctors die, etc. They aren't legally required to keep medical records forever. Keep your own

PS#2: If you read all of that you deserve an award, or something.
R.R.P 2011 Mayo Jacksonville, Dr. M. Wehle. Not nerve sparing. C in margins. Radiation 2023, V.E.D, Viagra and PGE-1 (80mcg/ml) injections @ 8 - 14 units. Originally Edex20, then compounded PGE due to cost. Inject. 12 yrs. It works. Treasure coast of FL.

AnotherOldMan
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Re: Zaps

Postby AnotherOldMan » Wed Oct 11, 2023 4:41 pm

Getting old ain’t for sissies.
BETTE DAVIS
Married 50+ years. Use VED for sex and do
daily exercises with both water and vacuum pumps.

Old Guy
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Re: Zaps

Postby Old Guy » Wed Oct 11, 2023 4:48 pm

LOL, I got all the way through. You do sound a bit more cheerful.
I worked in nursing homes for many years as an Occupational Therapist. Folks there would ask the question as to why they were still living. I always told them the other option doesn't look like much fun.
The hospital sounds like they are treating you well. If you're always early and the other person is always late it just makes sense to put you in first. While I was going through my BCG treatments, once a week for 6 weeks, I was always early. It only helped once. Waiting for the lab to mix up my medicine some days took 60-90 minutes. The 2 hour treatment once took 4 1/2 hours. Oh well. As a retired guy what else would I be doing? Riding my recliner maybe. Playing with the dog? I'm in no hurry.
Sorry for your friend. I've lost many over the years, one as early as 4th grade. Got one friend recovering from open heart surgery, just messaged him to see how he's doing. (because this post reminded me) I once said getting older was not much more than going to the doctor and funerals. Our pastor just passed away a couple months ago.
Bowel & bladder. All my years never had any issue either way unless I was sick, thank goodness. After all the catheters that been stuck in me now I sit to pee and still drip drip drip after. My job entailed taking folks to the bathroom, wiping butts and even changing soiled briefs. We come into the world wearing diapers, some are going out wearing diapers.
OK, now you made me yak a long post. Hope every day gets better for you.
Nov. 8, 2019
4+ years, Coloplast Titan OTR
Married 36 years to my beautiful young bride
Always here to answer questions if you PM me

Lester33
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Location: Indiana

Re: Zaps

Postby Lester33 » Sat Oct 14, 2023 1:48 pm

Best wishes
IPP on 6/22/2018 by Dr. Perito, Miami, FL.
22cm Coloplast Titan, 2 RTE
Testosterone therapy
Cancer free eight years, married fifty one years, wonderful sex life

Gt1956
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Joined: Fri Apr 05, 2019 2:47 pm

Re: Zaps

Postby Gt1956 » Sat Oct 14, 2023 4:06 pm

Bldoink, first I wish you good luck. I have noticed that people that have a positive outlook seem to have better outcomes. Your outlook seems good to me.
You've touched a lot of topics in this thread. My wife & I came from a smallish town. Maybe 25-30,000 residents back then. Several elementary schools but only 1 jr high & 1 high school. Kind of everyone knew everyone place. One girl has started a virtual cemetery on a site. I think its Find a Grave. As classmates die she collects the info & copies it to her virtual Cemetery. I seem to end up googling a few people & I have found several that have died that she's missed. I think she uses the local paper to start her searches cause lots of families have members that are still local. She's up to 66 for a graduating class in 1974.
I like that your friend lectures on recidivism. We have a condo in Las Vegas. The number of people living on the streets is astounding. The system is unable to deal with them. Sometimes they'll cross the street paying little attention to traffic. Last week my wife saw that one was hit near our condo. She described it as a bloody pile. Almost not recognizable as a former human.
I wish you good luck in your treatments. Strangely, I've never had a blood family member with cancer. Two brothers died at around 80 with no prostate cancer. My dad & his two brothers the same.
My wifes family did participate in the BRCA cancer gene research 30 years ago. My wife is proud that she literally brow beat her sisters into doing it. Kind of self serving tho. My wife now knows that she doesn't have the gene. All three sisters did. Was kind of obvious cause all 3 had already had breast cancer. One niece absolutely refused the free test offered to study participants. Yup, she has went thru the whole ordeal. Word is now that shes in extended care. Better known as about the end. Even bone marrow transplant didn't work.
Oh, when this niece dies. Her mother at 78 will of outlived all four of her children. Two girls to cancer, one son to penile cancer & one son to suicide.
And you think your post wanders! Chin up, good luck. Remember, old age is for survivors. Go out there & survive.
68yo, HBP at 40, high triglycerides at 45. Phimosis at 57. Type 2 at 60. Dr. William Brant May 1, 2023 CX 21cm w/no rte's penoscrotal 6" girth @ 6 months

Lost Sheep
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Re: Zaps

Postby Lost Sheep » Sat Oct 14, 2023 10:53 pm

bldoink wrote:I got my first zapping of 35 hits of radiation today (yesterday now). I had cancer in the margins when I had my RP some 12 years ago. (edited for focus and brevity)

I am having RP Oct 24 myself. Slim odds that RP would be successful, but I am hopeful that I will be in the 1 of 7 men for whom RP gets it all. Or, at least gives me another decade for other therapies to get more refined.

lYou mention incontinence as a side effect of radiation. Usually incontinence is a common consequence of RP? Did you have that? I do not look forward to dealing with loss of control, leaking, dribbling, pads, etc. I have already started PT/Kegel exercises. Do you have any advice?
bldoink wrote:(edited for focus and brevity)
I'm not at all depressed.

I don't feel depressed or anxious over my upcoming surgery (or during the VERY trying decision making process leading up to it - radiation? RP, Open RP or Robotic? and how to navigate the Veteran's Administration red tape). I don't feel it, cognitively. But people around me have noticed a change in my demeanor. So I have to acknowledge there is something going on in my psyche. I would like to think I am immune to that human trait. No such luck, I guess. So, I will just have to accept it and deal with it as best I can...as you are doing.

Thank you for the inspirational example you are setting for the rest of us.

P.S. I suggested that FrankTalk might consider a sub-forum focused on prostate conditions.
Lost Sheep
AMS LGX 18+3 Nov 6, 2017
Prostate Cancer 2023
READ OLD THREADS-ask better questions -better understand answers
Be part of your medical team
Document pre-op size-photos and written records
Pre-op VED therapy helps. Post-op is another matter


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