Radiation Proctitis Update- Hyperbaric Oxygen Therapy Approval Difficulties!
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- Опубліковано 28 вер 2024
- My first Radiation Proctitis video posted a year ago- and I still haven't gotten the treatment I need! After trying everything my radiation oncologist suggested I really wanted to give Hyperbaric Oxygen Therapy a try- but it has been an uphill battle. My latest step was getting a colonoscopy this week in order to have a "definitive diagnosis" to take to the Wound Care Center. From the photos they took with the colonoscope my poor rectum has seen better days!
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A few years ago I convinced myself I was in-shape enough to climb the highest mountain in Texas- Guadalupe Peak- • Guadalupe Peak Climb &... Things didn't go as planned!
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Glad you were able to get the treatment, cant wait to get an update on the results
Hi Parris, Im on the same journey unforntunately. What did your PSA nadir get to ? did it get to 0.1 ? Also did you ever receive a PSA PET scan ? All the very best and hoping you acheive the result you want from your teatment protocol.
Hey there. Sorry to hear you are going through this too. My PSA did get down to undetectable. That happened after finishing the chemo and radiation and about a year on Lupron. I did have three scans (I think they were PET scans- with something radioactive) over the course of three years and fortunately they didn't see any spread.
Try radiofrequency
My husband is having HBOT for radiation cystitis. 11 treatments so far and it’s been a miracle. No bleeding or pain since first week.
We are on the same adventure at about the same time. You are ahead of me so thanks for sharing, it really helps.
Do you fast at all?
For the past few years I have done intermittent fasting each day- mostly 14/10 but this year I am doing 18/6 and finding that works pretty well for me. But multi-day fasts? Not since I finished chemo. I did 48 hour fasts around each chemo infusion and that helped to reduce the chemo side-effects.
Also paris, Did you have a... Prosectomy first.? Then... Radiation?
The plan was for me to have surgery after the chemo- the idea being that the chemo would shrink back the cancer and the surgery wouldn't have to remove as much of the tissue surrounding the prostate. But while I was doing 4 and half months of chemo I continued to read and research prostate cancer treatments and ultimately decided to go with just radiation instead. They told me that I was going to need "follow-up" radiation after the surgery anyway so it just made more sense to me in that case to skip over the surgery and just do the radiation.
Did you get Spaceoar or Barrigel as part of your radiation therapy?
I expected to do the SpaceOAR- and asked about it on my first visit at the Proton Therapy center. I was told it wasn't necessary because of the "precision" of that particular type of radiation treatment. So I didn't get it. But yes, I wish I had.
@@parristx That's why you had the bleeding rectum? No space O a r? Yesterday he was ready to not give me the space.Or because he thought I would be squeenish. That it might not make a difference.But he's doing it anyway . I am so glad. Do you think that's why you had the problem?Would you recommend paris?
Long shot but look up intravenous vit c with iron tablet. I have been impressed with what I read so far.
I will look into it- thanks!
I have an embarrassing question about lupron or adt....can you have an type of orgas***........ anything?
That's a very legitimate question. And for the first year after starting on Lupron my answer would be "yes." But going into two years with no testosterone a sex drive and firm erections become more of a distant memory. Orgasms are still "doable" but much less intense. By year three the best way I can explain it is- you know that feeling when you need to sneeze, but you can't quite manage a sneeze, and then you "half-sneeze"? You are left wondering- "Did I really sneeze?" and feeling rather unsatisfied by the whole experience? It is like that. I finished my three years of Lupron last fall and I would say it took about four months after it wore off before I managed a really good sneeze. 😁 Keep in mind that my experience may not be representative- some men seem to keep on keeping on and others never really recover even after stopping Lupron.
@@parristx So you really think it was necessary to be on Lupron THAT long. I am starting proton therapy in a few weeks and I am only going to take three lupron shots. I am not taking anymore because I really don't believe in it. I really don't. How could taking something that will make you sick and weak help you fight off cancer.,?!?!
Paris I listened to all your videos. I recently saw one about your bladder control problem that you had during radiation. First question was it... PROTON or PHOTON . This is my dilemma . I am considering surgery or radiation. I don't think I might be a good candidate for radiation.Here's why. I pee at night at least FOUR times. More like six or seven times,. I always peed as long as I could remember at night. a lot!!. And when I do p at night it takes me AWHILE to start, I stop and go,, And I dribble. It takes me a while to pee. But I always😅 hmm THOUGHT this was NORMAL! That EVERYONE was like this !!So my question is, do you think that I am not a good candidate?Because I have a problem retaining my urine now. What is your opinion on this. I am thinking that I will not be a candidate.Because I will have a really, really tough time.With urine retention.
I had Proton Therapy treatment- I had to go up to Dallas for that as only larger cities seem to offer it. And I really can't advise you on whether your existing urinary issues would be a problem with the potential urinary side effects of radiation treatment. But if you ask a doctor who has taken several hundred men through the treatment I bet they will have worked with patients who have issues similar to yours and can advise you accordingly.
@@parristx Thank you for the reply paris. I saw the proton center center yesterday. He prescribes flomax. going to give me around forty treatments of proton therapy. Lower doses each time sparing my uretha.So I shouldn't have a problem with .... urine retention. I am going with proton therapy. Not .... Surgery. I listen to probably all of your videos by now paris . But it seems like every procedure you had you had major side effects.
How is the treatment going my mother has the same condition in the rectum she’s been thru 4 colonoscopy’s and nothing has worked she’s having to go to the ER every 2 weeks how is it that 60% of people are getting radiation therapy and they don’t have a proper treatment for this situation it’s stressing
You know, Paris. If you had that Argon treatment completed it would bring a whole new meaning to "blowing up the toilet"! 😅 We are pulling for you and I hope everything goes well! Just about time to get the garden into the ground!
🙏
You're amazing, Parris!!
🙏🙏👍👍🙏🙏
I would love to know how this works. Here I am dealing with mild radiation proctitis from radiation sessions to treat rectal cancer. I am cancer free, but am now dealing with this pain in the @$$ proctitis. BTW, I am will you as far as refusing the argon gas. NO THANKS!! BTW, I had the pleasure of being awake for my colonoscopy. Another pain in the @$$. Yay me!
What are your symptoms
@@karlitoskingtv8084 none now, but they were blood in stool, urgency and frequent bowel movements. I limited caffeine intake and started taking vitamin c. Problem solved! First time in a while I actually feel normal.
Ok I hear you my mom is going thru the same situation with all the symptoms except she’s loosing way to much blood she’s having to go to the ER every two weeks . Did you get a colonoscopy done ? Is your problem is the rectum ?