Prostate Cancer Radiation treatments

[Donder]

I've been on Lupron for four months now (2nd injection) and my PSA dropped from 139 to 0.28 with tolerable side effects, no metastasis. Doctors say I'm not eligible for surgery so later this week I will begin a series of 48 focused radiation treatments at Sloan Kettering. I've been told most men don't experience side effects for the first two weeks but beyond that no idea. Since I have a long trip by public transportation in New York City to the treatment center I'm wondering how the treatments might affect my ability to get around. I realize no one can predict my body's reaction but the experience of others in my situation would be helpful if I need to make alternative transportation plans.

[erjlg3]

Great PSA drop. My husband was quite tired and every time he came out of the radiation for about an hour he looked a little confused and he was always rubbing his head. That seemed to go along with the confused look. I don't think it was a fluke because it happened every single time. My best wishes to you.

[Craig51]

Affects everyone differently. I had six weeks of daily radiation treatments - and the only side effect was that I had to get up and go to the bathroom two or three times every night. And that was temporary.

Good luck.

[Olman in reply to Craig51]

As craig51 alluded to, it affects all differently. My experience was 40 treatments over two months if I remember correctly. In the beginning I wondered if they were actually doing anything, but as time went on it became apparent as I became weaker. At the beginning of treatment I was walking a minimum of a mile a day, but at the end of treatments walking to the end of the block and back was daunting. I live in the middle of the block. Good luck fellow traveler.

[AlanLawrenson]

I had proton beam radiation in Korea in 2013. In total 72Gray. It had no side effects on me at all other than an annoying small radiation burn of the rectum that appeared 9 months after treatment. I describe the whole thing in my new book on Amazon launched this week.

[bjorner3 in reply to AlanLawrenson]

Alan did you have a prostatectomy before proton treatment? Thanks!

David

[Dr_WHO]

I had surgery last April, started hormonal treatment last June. Was to start 38 rounds of radiation yesterday but I had to much "gas". They said that my diet was to healthy and contained to many vegetables. On Gas-X and will try again today.

Hoping for minimal side effects. Was told I can drive myself to the hospital and I can exercise every day. Was told that I could go to a family gathering about a week after radiation stops (if it ever starts!), and go on a scuba trip about a month later.

Have others have issues with "gas"? If so, how did you overcome it?

[van123 in reply to Dr_WHO]

Yes I had to change my diet to meat and white rice. I was also allowed canned green beans, potatoes, beets and that was it. Beef was limited to 4 oz or less and only on the weekends. Chicken, pork, and fish was fine for meat doing the week. No carbonated drinks. Drank juice with no pulp. As the doctor said, it was low fiber diet and not really healthy, but it kept the gas bubbles out. They gave me a Cat Scan before each treatment to ensure no gas, full bladder, and empty rectum area. I never missed a treatment.

[Hidden in reply to van123]

Wondering about the 'full bladder' requirement. After dealing with BPH for longer than I should have my bladder capacity isn't impressive. I read that the average comfortable full bladder holds 16 oz but they want me to drink double that. I wonder how much you were asked to drink. Radiation is two months away so I have time to practice. I realize that a full bladder is for my protection.

[van123 in reply to Hidden]

I would start drinking water 1.5 hours before my treatment. Every 15 minutes I'd drink a 16oz bottle of water. 10 to 20 minutes prior to my appointment, I'd put the clamp on. Then sip water until they took me in. This usually worked for me.

[Desanthony in reply to van123]

Another concern for me I have an overactive bladder so holding the water is going to be "fun"

[JoelT in reply to Hidden]

The full bladder helps to freeze the prostate gland so that it isn't a totally moving target.

Joel

[Fude in reply to JoelT]

Even without a prostate gland you have to drink till the bladder is full.

[Hidden in reply to JoelT]

It was explained to me that the full bladder 'lifts' away making the prostate more exposed and more easily targeted.

[Robertleeb in reply to Hidden]

I have a 10 min drive to my radiation center and 15 min wait, so I start my drinking water about 15 min before I leave the house and finish it before I get in my car drinking a 16 oz of bottle water. I have to time it right because they want it full as you can get it but one time they were running late and my timing got off , but I tried to get through the treatment and had to stop them in the middle of my treatment because my bladder was so full I couldn't control it and one the ladies that worked there ran and got me a urination bottle like in a hospital and she handed it to me, I barely made it didn't care who was in the room any more just wanted to urinate. it was a embarrassment but when you got to go that is all that matters. I think its different for each one of us but I hope you get a good idea how you can make it work for you

My Best

Robert

[Bluebird11 in reply to van123]

Van, thanks for telling your experience. How long ago was this and how many sessions. I never heard of the gas problem, but apparently it's a reality. Thanks.

[van123 in reply to Bluebird11]

I had the radiation treatments in April and May this year. I had 26 treatments. My prostate had been removed in Oct. 2015. The Mayo Clinic web site has an excellent low fiber diet plan, and the VA hospital gave me a handout with a low fiber diet.

[Hidden in reply to Dr_WHO]

I will start radiation in a couple of months but I am reading the preparation sheet for the 'CT Simulation Planning Session'. It says "to reduce rectal gas please take a gas reducing medication such as Beano -- NO Gas X".

[Hidden in reply to Hidden]

Why don't they stick a tube up your butt?

[dirtfisher in reply to Dr_WHO]

Had a problem one time with Proton radiation treatment but they had what they called the red robin which relieved the gas. LOL

[Desanthony in reply to Dr_WHO]

If I eventually go for IMRT my local hospital apparently gives out a diet sheet so that hopefully you don't get too much gas. However, I do not hold out much hope for me as I always have too much gas!

[RichGreene]

I'm at the end of a series of 33 treatments. I had some problem with diarrhea but I started a low residue diet and have no such problems now. I had no problems with fatigue during the first 4 weeks but have started napping an hour each day. Otherwise, no problems.

[Robertleeb in reply to RichGreene]

I'm getting close to my end of treatments too , a couple of weeks to go from a total of 40 rounds. I started the diarrhea too, took some Imodium , that works, I do my radiation around 11:30 am, and about couple of hours later I have the hardest time trying to stay awake so I take a nap.

must be a normal thing dealing with radiation treatments.

[Hidden]

Hi

Like others have said side effects vary by individual. I believe it may depend on how you feel before you begin treatment.

I was in top physical condition and 49 years old. Mine was 40 salvage radiation treatments 4 months after failed RP.

I live on Long Island. I had my radiation done at MSKCC. My routine was to book the 7:00 AM time for radiation. I would take a 5:00 AM train into the city and workout after the radiation treatment and then go to work. Towards the end of the treatments I had more fatigue but it did not interfere with my schedule.

Good luck with the treatment,

Bill Manning

[Donder in reply to Hidden]

Thank you for your energetic, uplifting story Bill.

Four months into hormone therapy I now experience hot flashes and some dizziness but that doesn't keep me off my bike, or out of Qi Gong exercises. I eat well as suggested by MSKCC team. And I'm in very good shape for a 76 year old architect. I guess what I needed most was the mental boost you and others on HealthUnlocked have provided. I'm psyched and ready for the several subways and a bus from Brooklyn to East 67th Street. Several friends have suggested I purchase a cane: with that and my age people will offer their seats they say. I'm holding that thought in reserve -- too much ego remains at this time.

Hopefully all has continued positively for you. I wish you the best of luck.

Don Raney

[Jmoskibike]

At 69 years of age I had RP surgery with removal of seminal vessels at my Urologists remomendation with a Gleason score of 7 and PSA of 4.2. with no incontinence. After surgery PSA of .2 but PSA levels began to increase and then double at 6 Mo. Increments. I had 37 Radiation treatments ( 5 days a week) follow-up treatments which after 2 wks. of treatments I experienced loss of energy but no incontinence. As others have stated side effects vary with the individual. I continue with 6 mo. Interval PSA tests with one coming up next Mo. Urologist said to expect PSA levels to fluctuate over time with hopefully low levels to persist without further treatment.

[van123]

I had no real side effects until after my 20th treatment which was just fatigue. I drove 2 hours a day for my treatments with no problems. I was talking to other people waiting for treatments who had over 40 treatments and they said after 30 treatments they found it hard to drive so they had someone drive them. Since you are taking public transportation you should be fine.

[Donder]

Thank you. Twenty treatments would get me nearly half way through. I may need to make alternative plans later on.

Don

[pjr2014]

Had surgery in Jan 2015 then 40 radiation treatments starting in May of same year. No discernable side effects. Good Luck

[1Max]

Proton therapy radiation or IMRT radiation?

[Donder in reply to 1Max]

IMRT

[Hidden in reply to Donder]

Do you know what the difference is between IMRT and SBRT? I know what the letters mean, but when to use one vs the other one?

[JimVanHorn]

Hi Donder, I had 40 radiations and drove to each treatment. I'm 71 years old. Then 3 years later I had metastases so I had 32 more radiations. The second time I had complications with a puncture in the colon and sepsis all over. Antibiotics saved me and all is well. Sweating stopped after three years and all is fine. My PSA has been less than 0.05 for 6 years, and I get

Eligard (Lupron) injections every 3 months plus Xgeva injections once yearly to stop bone fragility. You seem to be doing well and I'll being watching your progress. You can ask any question of our group as something happens we most likely have had similar things. Jim V.

[Hidden in reply to JimVanHorn]

Did they use SPACE-Oar with your radiation?

[Davisjl]

It has been over 12 years since my radiation (72 greys) so procedures may have changed, but I had virtually no side effects. I experienced SLIGHT fatigue, but gas was never and issue and I continued my regular diet and activities. Nothing was ever mentioned about having a full bladder and my urinary habits were unaffected.

[Hidden in reply to Davisjl]

The dose now is 79.

[j-o-h-n]

The 39 (8 weeks 5 days a week less 1 in Feb/Mar 2005, after a RPD in Sept 2002) treatments of radiation (at MSK - Dr. Zeleksy) was like having an x-ray at the dentist. No problems - no fatigue. However years later developed problems with my left Urinary tract and my left Kidney. Had to have a urinary stent (in and out) every 3 months. No more of them but only 25% use of my left Kidney. Also my Urologist saw the damage done by the radiation in my bladder. So beware of what damage the radiation may cause to the rest of your body. ASK the Radiologist. Good Luck and Good Health to you!

J-O-H-N 08/16/2016 Tuesday 6:55PM EST

[Hidden in reply to j-o-h-n]

Geesh. Are you saying they radiated your kidney? That's quite a bad miss.

[BigRich in reply to j-o-h-n]

I am thinking of going to your doctor. I have not made contact with the institution or doctor. Please contact me with your thoughts at [e-mail], include your phone number if you want me to call you.

Rich

[j-o-h-n in reply to BigRich]

You can contact me anytime you wish. i will try to fill you in.

718-544-6089.

p.s. when you call please remind me of who you are, cause my memory is like a sieve.

regards,

j-o-h-n Monday, 12/12/2016 2:22 PM EST

[Hidden]

After reading the other posts, I found out that, yes, we that have it, have it in so many ways.

1/1/2010 Diagnosed. Soon started 45 days IMRT radiation. Soon after began Lupron.

The radiation had little effect on me. I was able to do all my daily routines with no issues. As with the Lupron, after a few years, I started paying the price. I can't say for everyone, but my experience has been, at best, rough. I got all the side effects. Weight, boobs, hot flashes. Stopped working in early 2014.

4/16 In the ER for Melena, which is caused by Radiation Proctitis, which is caused by, the IMRT. Also, found my bladder blocked, and cathed me. Also caused by the rad.

4/20/16 to date Had four trips to the ER, admitted three times. All due to the radiation. Now it's the bladder again. Now I got a new Urologist, different story. Moving forward.

The point is, have a positive attitude now. Live the best you can now. Humor IS the best medicine. You will have side effects, no doubt, it's they way you handle them.

Peace, Joe

[John438]

I was diagnosed age 59 in 2014, with a PSA of 11 and a Gleason score of 7, 4 plus 3. My prostate was removed 9/14. Three months later my PSA started to go back up, so next step was broad beam radiation of the Prostate bed, 39 treatments finishing on 4/1/15. My PSA is now 0.15 however I had bad reaction to the radiation. First was the extreme fatigue which after a year is getting better, second was proctitis that lead to a cauterization procedure of the colon to stop the bleeding. Four months and two more doctors latter things are starting to get better.

Update, 6 months later things are not getting better. I am now in pain management and taking opiates, oxycodone which really constipates the hell out of you. The radiation made the colon hard and i feel like I have to go every 20 mins. I have been pretty much been chained to the toilet since March. On the upside I'm now taking Medical Marijuana to help with the pain and hopefully ween myself off the oxycodon.

We shall see.

[bitittle]

I am now just finishing my salvage radiation in the next two days. I will have a total of 35 treatments. I am 52 with RP 10/23/2013, G9, SVI, EPE N0 Mx0, neg margins. PSA rose in 6 months prior to radiation from 0.10 to 0.182. I decided to proceed with Salvage Radiation at UCSF. I am a vegan and changed diet from some of the heavy cruciferous vegetables to prevent gas. I also started Probiotics 1 week prior to radiation and continued till end of radiation. Very little gas problems. I am in great shape ran 25 mi per week for first 5 weeks of radiation. I started experiencing some minor fatigue and cut back to 15 mi per week. The fatigue may have been from 2.5 hours of San Francisco traffic every morning.😀 I am up at 4:30 am running, on road by 6:30 to make 8:00 am treatment and work till 6 pm every evening. Overall process was more of an incovenience than anything else. Piece of cake! Stay strong, stay positive and sorry to hear you joined this "Band of Brothers". I will keep you in my prayers.

Good luck!

Bill

[bhammel]

Probably non-responsive but I had 6 rounds of radiation in 2 36hr sessions while having epidural as only pain blocker. That is HDR brachethrapy with radiation delivered through 16 11'' steel rods buried in my prostate through my crotch in hopefully areas where cancer was located; the locations were guesses as my rectum was removed in 2004 due to colorectal cancer surgery which also meant no surgery to prostate gland area. To your question there was no pain before, during or after. Unfortunately the initial declared success proved a failure within several weeks and I survive the PSA bounces by means of Lupron injection each 4-8 mints. This all happened in 2008-9.

[pjoshea13]

You might not suffer this, but I had bowel problems (radiation proctitis) by the end of the first week of salvage radiation. The issue of public bathroom locations became a primary concern for me for the following 18 months. I don't know how I would have dealt with "a long trip by public transportation in New York City to the treatment center".

Meds for the condition never helped. Even so, I never had to resort to pads. I could manage the 20 minute car journey between home & hospital.

-Patrick

[Hidden]

I was told that I wasn't a candidate for surgery because I had TURP surgery 10 years ago. I'll go with radiation in a couple of months; taking eligard now.

[mshariff]

Donder,

You will be getting mild radiation exposures. Based on my experience and others, you will do fine. Stay hydrated and don't get constipated!

[Hidden]

Sorry, I have no experience with that. Can't say. But as you say, easy in the beginning, and tougher as they continue. Probably will need assistance at some point, or appreciate it. Might as well look into it now. Even "social concerns" committees at churches, or the social worker at MSK. Roswell Park in Buffalo provided paid taxi rides for people who had transportation difficulties. However I heard about it by accident, and I never saw it advertised, or a poster.

MSK is quite well regarded. Not eligible for surgery because of your general health?

Are they using SPACE-Oar? Curious.