My first day at UFHealth Proton Institute. I agreed to what looks like a new procedure for them. Instead of sticking a balloon up my bum before each proton therapy procedure I get a one time Space OAR procedure which separates the rectum away from the prostate. Results have been excellent says my doctor. It's done when they implant the gold markers. Hopefully less time to prep for each proton radiation session, no balloon discomfort and less embarrassment for the two months spent there.
http://www.spaceoar.com/what-is-spaceoar/
Perhaps this procedure will get much better results than IMRT or EBRT (which I think the results were for the most part based on?) since Proton looks to be less destructive to healthy tissues beyond the prostate and is not coming in at all angles of attack to the prostate. Also from what I understand the patients of UFHealth Proton institute report less side effects rectally so far with Space OAR in so much that my doctor definitely recommends it over the temporary balloon implant method.
It turns out BCBS never agreed to anything and the $1,269 they referred to was only an estimate of out of pocket costs if I use BCBS. Although financially things seem to be up in the air they reassure me that since Medicare A and B will have kicked in by the time I start the procedure and I will still carry BCBS I should not have to pay anything. They imply they will fight BCBS if it refuses to pick up the rest of the Proton tab. Let's hope it works out.
I chose Proton mainly due to comparisons of the many procedure resuts and side effects published on this web site. I'm not just talking Proton results but comparisons to the surgical and other radiation procedures. Also my Oncologist was a Da Vinci robotic specialist and although he gave tons of literature on his specialty he gave no on his affiliate radiation therapy and would not share any results of his patients, being a Da Vinci robotic specialist, pointing out doctor patient confidentiality. I asked for at least a percentage of his patients regarding impotency and incontinence but his said he was too busy for such follow up data on his own patients and depended on the figured reported to him from, well...who knows where (his company maybe?). That was a real eye opener to me. Don't be afraid to ask questions! I wasn't. It's my quality of life at stake here! From then on I decided it's the patients results I should be looking for, not so much doctors opinions. Meanwhile UF Health Proton sent me a brochure which included about 80 names with phone numbers and email addresses of their patients who were willing to share their experiences. I randomly picked around ten of them and their emails and return phone calls convinced me to proceed with Proton Therapy.
Today is May 12th 2016. On May 10th I had the fiduciary markers placed as well as the new SpaceOAR procedure. I was leary about SpaceOAR after hearing one story of how painful it was but the patient was only given 1 Valium if you can believe that! My prescription was filled before I got there. I had four 5/325 Hydrocodone and about 10 Valium in the bottles. Knowing how some doctors can down play the pain during the procedure ("You will feel some pressure") I swapped out the Hydrocodones for 10/325's saved from my last kidney stone procedure. I snuck an extra hydrocodone (I was only permitted one) and two more Valium (the nurse permitted three but said no more than 5) when no one was looking so don't blame the staff; that was my call. I'm not advocating what I did to anyone but I will say I am allergic to pain. On the table I found myself still trying to control the shakes as the five Valium seemed to work but did not seem to have that much of a tranquilizing effect. I was expecting to be in lala land but noooo. There was pain as the anesthetic needle went in, about five times I was stuck, the needle slowly and carefully inserted, but the pain was bearable. I was very happy for that extra Hydrocodone. Surprisingly the fiducial markers and the SpaceOAR were less painful; just considerably uncomfortable. I was also surprised at the minimal side effects afterward. When the drugs wore off there was a slight soreness of the perineum area but that quickly disappeared and it was like I never had the procedure at all. Hats off to the Doctor who performed my procedure as well as the rest of the very friendly staff there. GREAT JOB!
The next day, May 11th, I had to do an MRI with a full bladder. That was a real chore and I counted every second trying to hold my urine for about 23 minutes. I know it was that long after they took my watch because I counted every minute on my fingers as I rattled off the seconds in my mind. It would have been more tolerable if they hadn't placed a clamp down on top of my lower abdomen which added to the urinary urgency, however all went well and I held out. All in all I would definitely go through the two day experience again and nothing was unbearable for those two days. Today I have no side effects or discomfort at all.
I am scheduled to begin the Proton treatments in about two weeks. Best wishes to all of you.
I am about half way through the radiation treatments. Still no considerable side effects; just loose stools, which they say can happen as I am required to stay hydrated. Had a bad experience the second or third treatment session when I got onto the treatment table with my bladder exceptionally full. I couldn't wait till it was over and I had to go real bad. When I got to the restroom nothing came out except a few drops and the pain was intense. Finally I was able to urinate. Since then I have learned to go into the treatments with a more normally full bladder. Right now I can urinate well with no burning or pain and I only get up once or twice a night to go which is about the same as before the treatments started. The staff is great and the procedure seems like it only lasts 5 to 7 minutes once I am on the table, since I chose SpaceOAR instead of the infamous balloon therapy.
I am learning to watch my diet more and not eat out as much, eating plenty of watermelon to help stay hydrated, cooking for myself or making sandwiches. The Third and Main apartment complex where I am staying is $1400 per month and this includes lights and water. I chose the least expensive deal which has a full size fridge, stove, microwave, dish washer and small washer/dryer. It also has a living room and a bedroom cable TV which is included in the price, as well as free, fast WiFi. It's a one bedroom apartment and I love it. The parking area is gated and the whole place seems very secure. I am working out almost daily in the little gym area on the third floor, usually by myself as not a lot of the elderly patients go there. I have about 21 more days to go which is about 15 more treatments (No treatments on weekends; Saturday or Sunday). It's been pretty much a long vacation here so far and I'm hoping it stays that way.
Yesterday was my last proton treatment.
I woke up this morning with, well, let's just say I believe my libido so far seems about the same as before I received the treatments. My urinary function also appears the same without burning during urination. Stools are softer but it's probably due to the strict self imposed diet of watermelon and salmon burgers that I put myself on. Two burgers for lunch and two for dinner with watermelon for breakfast and in between meal snacks. I hope to improve my diet further in the future.
I think I should mention that after the biopsy which was done before the proton treatment my PSA shot up to 12.5 from 7.5 but from research I found this was normal due to the biopsy, so I started my treatments with the 12.5 PSA number. My PSA is down to 7.7 at this time. I understand that I must be patient and give it time to lower further; my next PSA is in 3 months and I hope to keep you all up to date.
My stay at the 3rd and Main apartment complex was quiet and relaxing. Although I chose mostly to keep to myself except for the prostate patient group support meetings, I did join the Jacksonville Radio Control Club and flew my RC jets there, making some new friends. You can click on this link.
Since I play the keyboard at my church I also spent an hour or two each day practicing various songs. It helps to bring a hobby or something to keep oneself busy.
Well I can't think of much else so I'll just say I'm still glad I chose UFHealth Proton Therapy Institute in Jacksonville and I thank God for feeling well.
Just a note to say that I just got my latest PSA; it has dropped from 7.7 to 5.0 through a 3 month period. The 7.7 reading was taken around the last day of Proton therapy. No urination or rectal side effects.
I had my follow up January 19th. I stated that I had some re-occurring diarrhea and some hip pain. The doctor did a rectal digital exam and noticed something lumpy and advised an MRI as well as a sigmoidoscopy. The MRI was good and the sigmoidoscopy revealed nothing cancerous. I had back pain before the proton therapy but not diarrhea. Perhaps the hip pain could be related to the back pain. I have a neurologist appointment February 1st. The diarrhea is still unexplained, since no matter what I eat it seems to re-occur, although an Imodium every 3 or 4 days takes care of it, and it seems to be getting better on its own. Time will tell. My PSA has dropped to 2.8 from 5.0 and a cancer blood test (CBC) revealed nothing. The hip pain seems to be getting better also and I am reading it is not a common thing with those who have had proton therapy so I cannot say for certain these are side effects from Proton therapy. For now I am listing nothing definite for side effects. I'll try to report more soon.
Just got my new April 3 month interval PSA reading. It has dropped to 2.0
The diarrhea I was experiencing is pretty much gone.
I'm still fully functional sexually however I believe libido has declined. I'm not so concerned about it at my age since it has been declining before the proton procedure and I believe it is just a natural part of life. Others may purchase Viagra and other drugs to hold on to youthful urges but that's not for me. I guess I can understand if married but I am single.
I wake up about three times a night to urinate but I seem to have a hard time sleeping at night at my age; I have a prescription for ambien and when I take it when I wake up at night the first time, usually around 1:30am I take the drug and don't usually wake up again till around 7:00am so urination episodes are cut from three times to one time. I have never wet the bed.
Unfortunately according to my neurologist I now have a diagnosis of lumbar lordosis and lumbar stenosis that is apparently unrelated to Proton Therapy. My dad also has problems with his back so it's probably hereditary, like the prostate cancer. My feet and legs go numb after walking up to a mile, so much so that I feel unstable. After sitting a short while things are back to normal though.
It is now 1 year from finishing my Proton therapy at Jacksonville. No major problems in any of the side effects areas. I've lost about ten pounds and was able to discontinue years of blood pressure medication. I think the previous months of diarrhea helped, although my bowels now seem back to normal. Getting back into exercise with biking since my back won't allow me to walk more than a half of a mile before numbness and instability set in but the 4 bulging discs in my back are unrelated to Proton therapy since I had the problem before the therapy. Fortunately after sitting for a few minutes I am back to normal. I was diagnosed with Lumbar Lordosis and Lumbar Stenosis. As of this July, 2017 my PSA has dropped to 1.3
My PSA has dropped to 0.7 and no side effects as of this date. Still have the Lumbar Lordosis/Stenosis back ailment but finding stretching helps relieve the back symptoms which to my knowledge are unrelated to the Proton therapy. I had back problems before the procedure. Other than that things are looking great, thank God.
Just got my April 2018 PSA back; it's 0.7 which is the same as 3 months ago and three months before that. Hopefully it will remain at that level or become lower from now on. Before the procedure PSA was 7.5 then jumped to 12.5 after biopsy, which some sources say will happen. No urinary or rectal side effects at present. I still wake up with an erection some mornings and have no doubt I could perform as a husband if I was married. So this coming July it will be two years after Proton therapy. So far I am still pleased with the procedure.
My PSA has risen from 0.7 to 0.8 which is of not to much concern to me since it seems a small bump which I have been advised can happen. The SpaceOAR seems to have worked only partially as I do get occasional loose stools. I was put on Dicyclomine but it makes me nervous, sleepless, irregular heart beats and my eyes hurt so I stopped. I do take over the counter Loperamide occasionally with no side effects or I just let the diarrhea run its course. A diet change helps but I'm not always in a position to choose what to eat. Urination is no problem. No blood in urine or stools. I was feeling tired for the longest and wondered if it was the radiation but since my BP has gone down and I got off of the Diltiazem I am feeling normal again after many years. So far so good; things could have been much worse.
PSA has dropped to .5 as of October 2019. The loose stools are no longer requiring medication. Libido is lessening to be honest. I could have Viagra prescribed but sex is not a priority in my life at this time and if I have to I know I can still perform without it.
PSA is still at .5 and libido is still there. Loose stools are not a problem unless I go with spicy foods. No incontinence.
Libido still there. Still have morning erections occasionally. Of course no wet dreams at age 74 but can have relations if I wanted. PSA is at .6 and previous PSA was .7 so that's still good.
No urinary incontinence. Still sensitive to very spicy foods but seems to be improving. All in all still no regrets after 8 years. Some years after my procedure a fellow church member testified of his faith before the congregation during a church assembly, saying he was choosing not to undergo any surgery or have his prostate fried or frozen. His cancer spread and he is not with us today. I believe in God and put my trust him during my procedure. I thank him for these 8 extra years. My brother died last year after hiding his diabetic condition from the family and even his wife. Very tragic. My Dad is now 96 after prostate surgery but his libido, he confessed, was lost to the operation. Another reason why I chose Proton.
Buddy's e-mail address is: buddy1065 AT live.com (replace "AT" with "@")
