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Old 11-23-2010, 06:10 PM   #1
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Radiation ulcerations: Gone from bad to worse

Well, I am an extremely depressed individual right now. My ulceration issue does not seem to be improving. I am following all the directives given to me by various "specialist". I am taking the proper medications and all the recommended dietary supplements. I have been taking pain medication as needed, which is generally most of the time though I have been trying to taper off. It is a double edged sword. It relieves the pain but causes constipation which aggravates the situation. I have been dealing with this for two months now.

At the same time as this problem started reared its ugly head, I started having urinary problems. Initialy it was more frequency, then more urgency. I was getting up every hour during the night. Then things got more complicated. I was having trouble going. Eventually I couldn't go and ended up in an emergency room being rigged up with a catheter. My clinic in Sarasota was telling me it was a result of the colorectal problem and when one improved the other would.

I consulted with some specialist in Boston. I had a urodynamic test and flow test performed. On a scale of 1 - 6, I was a six in reference to blockage. The doctor showed on the xray screen where the blockage was. It was quite visible - where the urinary track passed through the prostate.

My cancer clinic refered gto a Dr. Rucker, a urology specialist in Sarasota who specialized in "green laser" treatment. I was scheduled to go there next teusday to be treated. After reviewing all my records and test results, the urology clinic called today to tell the doctor thought I was not a good candidate for treatment. So where does that leave me? I have know idea. I am cathaterizing myself and have been for 2 weeks now. I had hoped I wouldn't be doing this for the rest of my life. It is not looking good. I don't know what my options are now or where to turn. The cancer clinic told me to find a urologist. Gee, that was really helpful of them.

One of my consults with a radiation oncologist in Boston commented that I had received a very large dose of radiation, and was quick to add that he wasn't questioning the treatment as such. It has left me wondering. Was I treated to agressively. It seems like it now. My problems are not common.

I suppose I should be grateful. I am cancer free. I picked the clinic in Sarasota so as to avoid the problems I now face. What if my colon doesn't heal? And what about ED. I think that is a forgone conclusion. I invision myself wiht a colostomy bag, having to cathaterize myself and suffering from ED. Not the quality of life I was seeking. I think I got cooked!! And to make matters worse, my T-level has gone from 40 to 4. Everynight I wake up with the sweats.

 
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Old 11-23-2010, 07:23 PM   #2
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Re: Radiation ulcerations: Gone from bad to worse

I'm so sorry to hear about your battles with the problems caused by the radiation therapy. It sounds like a nightmare.I wish there was some magic pill that would make it all go away, but it sounds like there will take more effort and time before you can resolve it all. I've heard of argon plasma coagulation to close up ulcers -- has that been discussed, or have you developed a fistula? I'm hoping your catheter will open up your urethra without having to implant a stent. My prayers are with you.
- Allen

 
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Old 11-26-2010, 03:13 PM   #3
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Re: Radiation ulcerations: Gone from bad to worse

Hi again B,

I responded earlier today on another threadwith some leads from Dr. Myers that might help.

He was probably treated by the same radiation expert who treated you (basing that on Sarasota), and he has written about how he coped with the complications and side effects after deliberately aggressive treatment for his own challenging case. It's clear he had to blaze some of these trails himself, not getting all the help he needed from the doctor who handled his radiation or from others. (That said, he clearly has a very high regard for this doctor.) Dr. Myers did not have to do the research on resolving the side effects himself, but he did have to navigate his way through to the key pieces of knowledge and weave it all together.

I have not had to go this route myself, yet, but my impression is that many men in your circumstances can achieve a lot of improvement, as Dr. Myers did himself. I hope you are one of them.

I may have already mentioned this, but consuming soy (or soy supplements) appears to help with hot flashes and sweats, as do fans. (I credit both for helping me.) If that is not enough, there are several drugs that are highly effective for the vast majority of us.

Take care,

Jim

 
Old 12-02-2010, 05:35 PM   #4
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Re: Radiation ulcerations: Gone from bad to worse

Quote:
Originally Posted by Tall Allen View Post
I'm so sorry to hear about your battles with the problems caused by the radiation therapy. It sounds like a nightmare.I wish there was some magic pill that would make it all go away, but it sounds like there will take more effort and time before you can resolve it all. I've heard of argon plasma coagulation to close up ulcers -- has that been discussed, or have you developed a fistula? I'm hoping your catheter will open up your urethra without having to implant a stent. My prayers are with you.
- Allen
Well, Tall, I did see something similar argon, I think. It basically flash-freezes everythiung and in so-doing seals the ulcerations. I am giving it more time. Everything is so super-sensitive right now. I don't think I have a fistula. I am still passing a fair bit of mucous with some blood from the inflamed tissue. I think I may be getting better in that I have managed to reduce the amount of pain medication I need to take. That was really complicating things by causing constipation which would seriously aggravate the condition and have going backwards. I am trying to manage my diet and fiber intake and hope I am going in the right direction.

The urinary issue - well, we are hoping it will come around on it's own. I was rejected for treatment by a "green-laser" specialist. He felt everything was far to sensitive for any kind of procedure which would run the risk of perforating the urinary track, which would mean a colostomy bag for the rest of my life.

There is a link between my colon issue and my urinary issue. Hopefully when I clear up the former, the latter will improve as well.

Trying some different med's as well.

The Clinic also mentioned an option of running a tube from my bladder exiting through my abdomen. NOT INTERESTED! I want this fixed, if not now, eventually. Thanks, Tall.

 
Old 12-02-2010, 05:58 PM   #5
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Re: Radiation ulcerations: Gone from bad to worse

Quote:
Originally Posted by IADT3since2000 View Post
Hi again B,

I responded earlier today on another threadwith some leads from Dr. Myers that might help.

He was probably treated by the same radiation expert who treated you (basing that on Sarasota), and he has written about how he coped with the complications and side effects after deliberately aggressive treatment for his own challenging case. It's clear he had to blaze some of these trails himself, not getting all the help he needed from the doctor who handled his radiation or from others. (That said, he clearly has a very high regard for this doctor.) Dr. Myers did not have to do the research on resolving the side effects himself, but he did have to navigate his way through to the key pieces of knowledge and weave it all together.

I have not had to go this route myself, yet, but my impression is that many men in your circumstances can achieve a lot of improvement, as Dr. Myers did himself. I hope you are one of them.

I may have already mentioned this, but consuming soy (or soy supplements) appears to help with hot flashes and sweats, as do fans. (I credit both for helping me.) If that is not enough, there are several drugs that are highly effective for the vast majority of us.

Take care,

Jim
I guess I will have to get Dr. Meyer's books. I really thought after my first year check-up in July that all the worst was behind me. This outcome was not in the lireature, nor was the possibility of this happening ever mentioned.

I was quite surprised when I read the report that Dr. Dattoli had staged me at a t3a. I staged myself at t2b. But what do I know? Logically, I guess,a t3a would need a more agressive treatment.

That being said, I think it would have been appropriate to discuss this with me and outline the risks. I may have considered other options. One of the reasons, one of the biggest reasons, I picked that clinic was for a a good outcome that would not leave me dealing with bowel issues, urinary complications and most assuredly, ED in view of everything else.

I am doing my dammedest to eat all the proper foods and take all the appropriate supplements. Don't know what else to do - but, I guess, get Dr. Meyer's book and see what I can learn. Thanks, Jim

 
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