I have been in this battle for almost 6 years (please see bio for complete treatment history).
Almost 1 year after extensive proton beam radiation, I began to experience internal bleeding. Subsequent colonoscopy, rectal MRI, and sigmoidoscopy revealed a 4 inch lesion in rectum that is radiation proctitis or radionecrosis. Cannot be cut out as it would not heal.
Surgeon recommended HBOT which is indicated to enhance potential healing and improve quality of life.
Anyone been down this road?
Best wishes. Never Give In.
Mark, Atlanta
Written by
vandy69
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If you can get that therapy do so, pure oxygen enhances the system to become more alkaline. Try to get reverse osmosis water as well, your circulatory system will thank you for it. And please please at least 30 min of cardio a day, walk, jog, stretch, whatever it takes, it's like money in the bank.
If you can get that therapy do so, pure oxygen enhances the system to become more alkaline. Try to get reverse osmosis water as well, your circulatory system will thank you for it. And please please at least 30 min of cardio a day, walk, jog, stretch, whatever it takes, it's like money in the bank.
This goes to show that after all the hype proton beam radiation can do the same damage as IMRT
The NIH says that HBOT is effective for certain conditions which include damage from radiation. According to the NIH: Soft tissue radionecrosis and osteonecrosis after surgery on irradiated mandibles are reduced by hyperbaric oxygen.
It is sort of a no brainer for radiation damage. All of its side effects are positive.
By improving circulation it can only help Hbot. My understanding is that it does more than improve circulation.
Sildenafil would also help improve circulation. Insurance won't pay for it's use off label. If you take the generic 20mg and buy it with a goodrx coupon it is fairly inexpensive though.
Trental may help red blood cells get through blood vessels constricted by fibrosis. I have never seen it used to reverse necrosis. It has only been shown to have very small benefit, and one has to take it for at least a year to see any benefit.
Yes. Ozone is a toxic gas. I'm not aware that it has any value in treating radiation injury. Hyperbaric oxygen means that you sit in a tank for a while, breathing in pressurized oxygen. The increased oxygenation encourages healthy cells to proliferate, and may reverse radiation damage.
Ozone therapy is usually done by inducing ozone to the body through anus for three minutes using a special machine. It is used as an alternative therapy to give more oxygen to the cells. I don't know whether this treatment scientific or not.
I am likely to be shortly undergoing Docetaxel for the first time very shortly, so are there benefits in using HBOT as an adjuvant for assisting healthy cells to recover whilst undergoing chemo?
I have read a lot about HBOT. If you decide to go for it, then I would love to hear about your experiences with HBOT. If it helps.. .how it makes you feel.. differences.. etc.
If it makes any difference. I have not heard anyone complain about HBOT.
I was diagnosed in 2014 with radiation damage to my bladder and rectum. My heamoraging was mainly through my urinary tract. I was told at the time that only about 7% of patients have radiation damage to organs after treatment. I was sent to a facility to have hyperbaric oxygen treatment over a course of 100 days. The science behind this treatment is that in a decompression chamber that mimics an increase in atmospheric pressure aquivalent to two atmospheres and breathing pure oxygen under this pressure helps the body to absorb oxygen at a greater rate dispensing the oxygen within the bloodstream to areas that normaly would not be able to absorb this amount of oxygen. This would in turn help vessels to heal organs with the increase in blood / oxygen supply to those organs. They use this treatment for patients suffering wound healing problems after surgery or diabetic healing issues. In my case it failed resulting in salvage surgery to remove the remains of the prostate, bladder, lymph nodes and appendix. The salvage surgery has given me a new lease of life for the past four years. Having just revealed that this treatment failed me does not prevent me from recommending it for you. I was witness to quite a few cases where this treatment was of value to other patients. The treatment is not invasive or carries any side affects so is relatively benign froma patients perspective. I would recommend it as a first option for anyone experiencing radiation damage to organs causing bleeding symptoms.
I have gone through 40 treatments HBOT for my radiation proctitis and unfortunately I have nothing to show for it, no change. I could no longer take the pain so I had a colostomy operation a year ago. Needless to say I still have pain from recital spasms but I can now leave the house without the fear of recital incontinence. But keep in mind I have been an outlier on every procedure for prostate cancer to date. Good luck.
If I may ask, what type of radiation did you have and where was it administered?
I had proton beam radiation at Hampton University Proton Therapy Institute at the recommendation of Dr. Charles "Snuffy" Myers. I wanted to go to the U of FL in Jacksonville.
Vandy 69, I believe you were to see your doctor within these past couple of days, so I was wondering what news you might have been given. Caring for you and your family, and yes . . . NEVER GIVE IN!
All-in-all, that sounds like a GREAT report!!! If only Ray's PSA ever was as low as even 1.4, rising from .4 !!! Everything really looks so encouraging . . . the non-cancerous lesion and the really fantastic news regarding stable liver! Oh, Mark, I am delighted to hear your news, as you fight and "never give in" for not only you, but as I've said, you're doing it for Ray, as well, in my eyes! Ray took Xtandi, after a short bout with pretty much unsuccessful results on Zytiga. I can't recall exactly when he began Xtandi, but I seem to think of it as being the best treatment tool of the various ones he had. He was on it for probably a year and a half, and actually was the last treatment he relied on as his health declined. I just know you will continue to do well . . . we're counting on you, Mark!!! "N.G.I."
Just wanted to check in after 2 weeks or so to see how everyone is doing on this beautiful Easter week-end. Praying that the return to Xtandi will really be miraculous for you, and that your PSA will stabilize. If y'all have been up to your world travels, please send pics as I love seeing the two of you "living it up and knocking that obnoxious illness out of sight!"
And as my dear Ray would always say to others, "Wishing you a blessed Resurrection Day!"
And as you, our friend, would always say, "Never Give In!"
When did you get Xtandi? I went to Uof M to get help and was not offered Xtandi.
I then went to Carmanous cancer institute in Detroit and was prescribed It.
In the interim the Psa had a rise from 40 to 120. Been on it nor for 21 months and am advised the doctors want to switch me to Chemo.If I had the drug when Psa was lower it may have been more effective.
I have had Xtandi twice--first in 2015-16 after Zytiga failed (both prescribed by Dr. Charles "Snuffy" Myers) and second in March of this year as a sort of "Hail Mary" after chemo (and it has worked for 4 months). Snuffy has retired so care is being managed locally in Atlanta. My Med Onc here had ridden shotgun when Snuffy was active, so my local guy managed chemo and has been with me for 6 years.
Mark, we are also in Atlanta. May I ask where you are receiving HBOT? We are at Emory and though we've mentioned it a couple times, no doc has stepped up and prescribed it. I would really like for my husband to do this.
I will be going to Emory-St. Joseph's for my 40 treatments. Same group (Hyperbaric Physicians of Georgia) also have treatment centers at Kennestone and Northside Forsyth. St. Joseph's is very close to my home and has 3 single person chambers.
David had a RP 9/2018. Gleason 4+3, tertiary 5, stage T3b N1. Pre-surgery PSA was 6.98. Post surgery, it was 3.14. Axumin showed nothing except some very mild uptake on hip lesions that were previously determined by MRI to be hemangiomas. The January round of scans showed that these lesions had grown. Now the thought is that they are PCa. He started Bicalutamide mid-Feb and Lupron a couple weeks ago. He's scheduled for ablation 4/10. We expect to end up with radiation at some point, but he'd like to try the ablation first. Our MO is at St Joe's. Dr. Kucuk. Surgeon was main campus. Dr. Alemozzafar. Ablation guy is John's Creek campus. Dr. Prologo. Although David doesn't have any acute injuries, he would like to use it as part of his treatment plan. Ideally we'd like to do it in a way that would be covered by insurance. Any thoughts for us?
The doctors I have spoke to about HBOT 3 of them said do not do and one oncologist was for it . I am unable to see any discussions on google about using for Pca. Just lookin for some help. Thanking in advance ,
I was recommended HBOT for a radiation caused rectal lesion, not for PCa. Tried it for 13 sessions, but could not complete suggested 40 sessions due to severe back pain which required bone cement in L4 vertebrae. Not caused by HBOT, but probably caused by radiation, 6 years of ADT, and gravity.
My husband had Dr. Omer Kucuk as his oncologist from 2010 until 2015. We absolutely loved his knowledge and gentle bedside manner. He and my husband, Ray, often would get into conversations about various topics because Ray loved to discuss just about everything in the world if he could find someone who would debate his opinions. We were at Emory Clifton Road until Dr. Kucuk began only seeing patients at his St. Joseph's office in 2015. Emory was much closer to us, plus we felt a warmer reception from the staff at Emory, like a real family atmosphere with all of the wonderful nurses, but due to the change in location of chemo infusions, we had to switch to St. Joseph's. I truly felt if my husband had to be ill with mCRPC, then no one would be better as his oncologist than Dr. Kucuk. He was such a compassionate doctor. I hope your husband finds that same genuine quality with him as we did.
Blessings on successful treatments at St. Joseph's. Please mention to Dr. Kucuk that the Bishops send a "Hello" to him.
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