My doc stopped the orgovyx I was taking because after just 2 weeks my PSA started to rise 10 points, then the second month it had risen another 10 points.. So now I just got my first Lupron injection. I chose once a month injections to see how well it works. If it works I'll increase it to 3 month injections. In 5 weeks Doc wants to start me on Full Pelvic Radiation which brings me to a question.If anyone has had Full Pelvic Radiation could you tell me what side effects you experienced or are now experiencing.
How long you were getting FPR before your side effects started.
How long you've been on FPR and how your feeling or how it changed your life.
I really do not wish to go into this radiation blind. Any information will help.
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woppaginny
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I finished mine at the beginning of June. Five months later all my white blood cell counts are still very low and I’m still pretty tired. I thought I would recover a lot quicker but only in the last few weeks I can get through my day without taking a nap. I did chemo before the radiotherapy and I bounced back within a month after chemo so I was surprised how long it has taken to recover after RT. Other than that I’m fine and do long walks with the dog every day. Hopefully will get back to the gym in a month or two. Hope it goes well.
Was the Orgovyx keeping your testosterone down? If it was, Im not sure how switching to Lupron will change anything. I have been on Eligard (Lupron), Firmagon, and Orgovyx over the years, and I find Orgovyx superior from a side effects point of veiw, plus it seems to keep the T lower than the other drugs
Some men develop radiation cystitis -- and/or radiation proctitis -- even many years after the radiation is completed. This happened to my husband who had radical prostatectomy at 70yo, salvage full pelvic radiation (IMRT) 18 months after the surgery. 4-5 years later started with blood in urine. He is now in full-time 24/7 Foley catheter with drainage bag. It's been hell for him. As difficult as ADT side effects were for him, we wouldn't have had the radiation at all but continued on ADT and/or other drugs. His QOL is greatly diminished.
Have you tried HBOT, hydro baric oxygen therapy? I had bladder bleeding and needed a catheter a couple of times, all my bleeding was while I had stents in but my Dr. had me do 31 HBOT treatments, no bleeding since in almost a year. HBOT has very few side effects, the worse reply I got when I researched it was it didn't work, but I would say almost 80% of those that used it said it helped to varying degrees.
He did finally have 40 HBOT treatments that were successful in stopping the bleeding. Obviously, should have done it sooner; but wasn't recommended as there were still questions regarding the treatment's affect on any "stray" PCA cells. This is his story only. I just put it out there with the hope that radiation therapy is considered with the greatest care for late side-effects. So much has improved that you should be confident if you & your oncology team agree on whatever treatment, it will be the best choice given what is know. So many factors. Wishing you the very, very best.
The important thing is that your RO maintains strict dose constraints for upper bowels. Ask to see his dose volume histogram when his planning is done.
I've never had a problem showing a Doc peer-reviewed clinical data he missed. If you aren't an a*hole and send it as an email to be discussed on a future visit, it's not a problem.
wopaginny what's that? Hey Anthony (a/k/a Antnie or Tony) uncle Carmine says you're a wopaginny cause your car is blocking his or did you tear down his sign "You takea ma place, I breaka you face".....
p.s. Give Maria a kiss for me (but not on the lips) .......
When I asked she pulled up the planning data and spent 20 minutes explain it and her whole process. She is also teaching my granddaughter about it because she had expressed an interest in radiation oncology while in med school.
She believes in teaching patients and encouraging new radiation oncologist.
They are usually very proud of their plans, because that is what they actually do. Patients usually don't ask, so they don't get a chance to show off all the good work they do.
Yes T_A advise is very good.. And if possible make sure they use something new called I think Space Oar around your bowels.. I had an RP in 1995 & was good for 8 year.. Than they gave me 36 days 75gy of IMRT Pelvic radiation in 2003.. Only helped a little.. No real SE at the time.. Went in every day at 8:45 had a bite to eat & was back at work by 9:30.. I don't think they had Space Oar available at the time or I wasn't told or offered it... Things were ok but after like 9 years I started to get radiation Proctopathy.. (loss of bowel control) Doesn't happen every day but like 3 or 4 times a week.. Causes me to have to wear Men's DePends 24/7 Pitts.. And I'm 80 now & financially stable and finally in remission due to having a PSMA scan and SBRT to 2 hot lymph nodes, but I am unable to travel anywhere.. Sucks Can't take any bus trips or cruises like I would like to.. Just have to keep very close to home.. Very poor QOL.. Can't even go to the gym or local sporting events as I never know when I may have an episode that comes on very quickly.. And of course wife & I can't go to FL in the winter anymore either. Really SUCKS....
And I asked my Gastro guy when I had a colonoscopy some years ago and he said there was nothing they could do for my condition... Really sucks and I would never do Pelvic Radiation if I had the option again... Just my .02 cents worth..
Thanks for your input. I have been putting FPR radiation off since 2017 and not looking forward to it. I would like to have proton beam therapy but the only place around here to have that is many miles away. It is aimed directly at the prostate and not full pelvic. Safer from what I read. If there were any other ways to deal with this crap I do it. But I'm 78 now and short on funds anyway. I could hold out and not get FPR but then the future would not be to bright. Been thinking of getting a full orchiectomy,
I had the full Orchiectomy & don't regret it a bit.. Was an easy outpatient op.. I had a second opinion done on me 6 months ago & the highly acclaimed Doc said I did good by having an Orchy.. He said I would live longer than any of the guys on long term Lupron.. After a long time on Lupron etc. he sees many of them come in with one or more cormobidities.. ( heart issues, broken bones, early dementia Sarcopenia etc.) He doesn't see that much at all in the Orchy guys.. And an Orchy is once & done financially.. Good Luck.. (mine ran about 8K )
I only had radiation to my prostate bed but my brother had FPR many years ago and now mightily regrets it. The long term impact of FPR ruined his QoL completely. My brother has the same issues, now, as noted by Dynamo.
I am only 4 months post 44 treatments IMRT. Experienced only loose stools a few times during treatment. Been on lupron 14 months. DX Gleason 9. psa 106. No Mets. No problems so far. PSA now .01
Well here is one for the positive side. Completed pelvic and 25 weeks of radiation to the prostrate. I am coming up on 6 months. I had some diarrhea but that has gone away after 1 month. Experienced the low white blood count. That has resolved. Had some minor shortness of breath on steep hills. That has gone away.
After two months I am back to my normal stuff. Hiking 5 to 6 miles a day with dogs and doing 20 to 30 minutes of resistance training 6 days a week.
Hopefully it got all the microscopic cancer that may have left them prostate. Honestly the Lupron was much worse by comparison.
Grateful to hear some positives here as we expect that radiation is in the near future. Sounds like the radiation given years ago was much more damaging than what is used now. Are you on any adt now?
Improvements in irradiation technologies are a reality, but not the decisive factor. Radiation is a slow killer and there has been no change regarding this.
I was only on 6 months of ADT. Two months prior and 4 months after radiation. Honestly I started doing resistance training and aerobics 4 months prior to radiation and that really helped with the side effects and still does. I also changed my diet.
Supposedly my body will run out of Lupron in October and I then just have to wait and see if the testosterone comes back. Always something to look forward to with this cancer! LOL.
I had full pelvic radiation part of the EXTEND trial at MD Anderson. I had a spaceOAR put in. I had no symptoms, except my frequency came back during treatment, but went away after completing.
Radiation - I've posted this before so to those people who have already seen this please forgive me.
I had 8 weeks of salvage radiation to "the bed". 5 days a week (not weekends) for 8 weeks minus 1 day for a total of 39 sessions at MSKcc. The actual radiation was like getting an x-ray by my dentist. I never had any side effects during the whole 39 sessions. However, 2 years later my left urinary tract was "fried" as per my urologist (or from passing prior kidney stones he was not sure). So, I had to have a urinary stent placed up my urinary tract (through my willy which is really nothing - sounds terrible but it's nothing) to aid in passing my urine (which was never a problem anyway). So I had stents in and out every three months for many years and now I'm stent free, However today 15% of urine from left kidney and 85% from right kidney, but not a problem. So make sure you get a good radiologist. Also, I don't know if this would apply to you but guys here recommend SPACEOAR HYDROGEL to be inserted for protection of parts of your body. Make sure you ask your R.O. about the space oar and make sure you ask here on this forum before getting fried.
Radiation 3 years ago after RP failed to get the job done. Urinary bleeding started soon after and gradually got worse. Eventually had total urinary retention. Catheters and cystoscopies led to TURBT. Pathology report on tissue removed DX radiation cystitis. Urologist burned the area. Bled off and on for three months but it finally stopped and has been good for past year. Follow up Cystoscopy 6 months after TURBT showed all good. Fell on a hike a couple of weeks ago and noticed a bit of blood but was gone in a few hours. It was quite a crash so no big surprise. Urinary bleeding is a common side effect of radiation so it may return down the road. No bowel issues, fatigue or anything else.
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