My first post - PCa diagnosed - looking for advice on HDR BT

Hitchhiker said...
OK, finally was able to connect up with FCCC this afternoon. Playing phone tag is killer - I tried using the online portal to ask my questions and they always call me instead.

So, FCCC I'm out for the entire procedure, because they only give two fractions, spread out over two days a week apart. 1350 CGy or 13.5 Gy per fraction, all at one time, for a total of 2700 CGy or 27Gy total. This is their protocol at FCCC. I asked if they adjusted the total radiation dosage based upon grade of cancer, and the doctor indicated no, but I was only talking to a resident and not Dr. Horwitz. Does this sound right? The total Gy seems a bit light, but I'll go back and run the calcs based upon with TA said under separate cover using alpha/beta hypofractionated ratios.

Glad the procedure is going well for you. OK, it makes sense to me now, you are having one fraction per implant. I actually had a choice at UCLA whether I wanted one fraction per implant or the traditional 3 fractions with each implant. This was over a year ago, and I guess the one fraction per implant was still a bit more experimental at UCLA. I opted for 3 fractions per implant when the Dr. told me "I have 10 years of good data on the 3 fraction method". If I were going in today, I might choose for the "one and done" method.

Hawaii-Guy said...
Glad the procedure is going well for you. OK, it makes sense to me now, you are having one fraction per implant. I actually had a choice at UCLA whether I wanted one fraction per implant or the traditional 3 fractions with each implant. This was over a year ago, and I guess the one fraction per implant was still a bit more experimental at UCLA. I opted for 3 fractions per implant when the Dr. told me "I have 10 years of good data on the 3 fraction method". If I were going in today, I might choose for the "one and done" method.

Yes, a single larger fraction per implant. Apparently that's the protocol they've been doing at FCCC for several years now. I asked if there were any other protocols available and there are not, at least not for low risk PCa. There are obviously different protocols for intermediate and high risk PCa.

Honestly, if I had the choice of a mult-fraction approach like you had, I would have given it serious consideration, even now.

Good to read your experience. I go in for HDR on Monday/Tuesday @ UCLA. I got a lot of tips from Michael T and I have the rest of the week off to heal the seat area. Looking forward to getting this part done then on to IMRT @ CMH ventura. HT sucks. Good luck on the healing Hitcher.

Checking in one week out from my second implant now. Seems like so long ago LOL.

I've definitely had good and bad days from the acute side effects. Some days I feel pretty good and don't have much trouble from urinary or bowel SE's, other days not so good. I think this is in part as I get back to more of a normal diet. For the first few days following the second implant I stuck to a low residue diet. Starting this week I've added in more fiber rich foods - like wheat breads, fruits, salads, vegetables, etc. Still some burning/pressure when I pee - using NSAIDs seems to help a bit in this area. Gonna try Aleve as opposed to Advil starting tomorrow I think - just to cut down on the frequency of having to take pills day to day. I'm still on Flomax as well - plan on staying on both the NSAIDS and Flomax for a while - at least 30 days, after which I'll revisit. I'm still avoiding all caffeine and alcohol for the time being as well.

I have about 2-3 hours of commute time back and forth to work each day, during which I have no bathroom access at all, so the short term acute side effects are concerns for me as a result. So far I haven't run into any problems this week. I'm still telecommuting 1-2 days a week to be able to rest more and to gradually get back into the swing of things long term.

Hopefully the short term acute side effects are falling away now, and the long term side effects will be minimal over time.

Hello fellow PCa gents.

I'm now two weeks out from HDR BT implant. Things continue to settle out overall. I've definitely noticed more sensitivity to my diet both from a urinary and a bowel perspective. Recommend avoiding acidic foods and drinks as a best practice. I need to pay more attention to improving my diet and exercise routine overall - I think this will help all around.

I had hemorrhoids prior to HDB and, for the first week, they were very muted, almost like the hemorrhoids were blasted from the radiation and temporarily out of commission, but they came roaring back this week and the rectal bleeding started again today. Anyone have any advice on how to best cope with hemorrhoids after radiation treatment? Are there any specific best practices? I'm not using any stool softeners yet because I'm not really having any issues in that area, but I've also read recommendations to use Mirolax or Metamucil to help - any truth to this?

I've had several nocturnal erections and another in the shower one morning with Mrs. Hitch but we chose not to take advantage since it wasn't yet two weeks out from the last implant. I'm kinda glad I didn't because I ended up having more pain that day for some reason - perhaps related to just having an erection. I'm a bit nervous about trying sex for the first time since I've read several accounts of painful orgasms after brachytherapy in particular, but I've gotta get back on the horse sooner or later so to speak. Bigger picture I'm very thankful that I can still have erections like this as I know many in our boat aren't so fortunate.

Been back on the commute bandwagon for the past week or so and so far so good. The bowel pain when having to hold it is still there but it is lessening in intensity day by day. Urinary discomfort continues to abate, almost no pain at this point, urinary stream still isn't what it was, and I've noticed I don't always void my bladder completely and I'm circling back to the toilet a few minutes later as a result. Aleve seems to help quite a bit overall so I've been taking one Aleve every 12 hours consistently along with Flomax.

Dewayne said...
Hitchiker,

I've enjoyed catching up on your progress since I haven't been on much in the past few months.

I had toe surgery on Dec. 31st, since I had blown thru my deductible last year....

Nothing like surgery on the toe to take your mind off prostate cancer for a while....LOL

I've never had the privilege of toe surgery but I've known a few folks who have undergone either toe or foot surgery and I've heard the recovery can be long and uncomfortable. We don't realize just how much we use our toes/feet until something happens - and we get sidelined in the process. Hope the healing process is going well for you so far! 😄

Dewayne said...
I had many of the same issues as you're having but be assured they will pass. The urgency subsided for me after 3-4 months if I remember correctly.

The first time I had sex it was like an axe murder scene so be aware and prepared for that. The next time I had sex my seamen was very brown. The next few times my seamen was invisible, meaning nothing came out. After a few months some starting trickling out. Now I can say it's better, but miles away from that 21-year-old kid that could hit the opposite walls in a single ejaculation! (sorry so crude).

That's my only side effect now - reduced seamen. So, I'll take that. I also went thru two or three months of painful ejaculation. It's all good after a year or so though.

I'm glad to hear that the side effects should continue to abate over time. Time can't pass quick enough now LOL.

Well, Mrs Hitch and I had sex over this last weekend and everything worked as designed. Orgasm did feel a bit weird as I could feel the prostate contracting on orgasm and that was a very odd feeling to say the least. I had some minor pains, burning and irritation and a bit of indigestion that evening but other than that I'm simply very happy that the plumbing still works! 😄

Dewayne said...
I had a very painful anal fissure that took eight months and several doctor's visits to heal. It came from the biopsy as it was hurting for my first HDR treatment.

Good luck. Keep your head up and moving forward. I haven't thought about cancer much in 2016.

Ugh an anal fissure sounds bad. Hopefully my hemorrhoids don't get much worse as a result of the radiation but worst case I will have to follow up with a specialist and see what kind of relief I can get longer term. In the interim I will manage best I can.

Definitely noticing continued sensitivity to diet on a day to day basis. Saturday evening I went out with my wife and daughter and had caffeine in the form of iced tea (several glasses) and a bit of a spicy meal and I paid for it that night. Definitively noticed more burning and discomfort probably from both the caffeine and the spicy food. Been sticking with water for the most part post treatment and avoidjng acidic and spicy foods.

As of today I'm a little over three weeks out from my last HDB-m implant. I realized while in the shower this morning that today was the first day that I woke up and felt normal - I didn't wake up and immediately start scanning for signs of any aches or pains from side effects. Progress!

Specific to my previous post, I researched the differences between grade 1-4 genitourinary and rectal side effects. So far, I'm having what would be categorized as level 1 rectal side effects in the form of increased frequency with light bleeding, mostly from my hemmorhoids, and occasional bowel urgency, though the urgency has lessened this week and I'm no longer experiencing pain or discomfort delaying bowel movements like I was previously. Outside of that, I'm not really seeing any other side effects beyond a slightly reduced urine stream. I do still have very slight dysuria but it is only intermittent at this point - I think it largely depends on diet and what I'm drinking.

Mrs Hitch and I went out for happy hour yesterday afternoon at Bahama Breeze and I had two tropical cocktails, the first alcoholic beverages I've had since I underwent treatment. I expected some increased urinary irritation, but didn't really experience any last night or today. Yay!

Hopefully I continue my journey back to normal life as the weeks progress.

Thanks to everyone who has contributed and helped from this forum, you guys and gals are quite the lifeline for anyone who is burdened with a PCa Dx.

Post Edited (HitchHiker) : 3/18/2016 3:09:23 PM (GMT-6)

Gents (and ladies of course!). Tomorrow marks five weeks out from my last implant. Last week was a good upswing toward normalcy. Rectal side effects calmed down quite a bit, and urinary burning has subsided almost completely. Finally finding a new normal somewhat close to the old normal.

I stopped the Aleve last Friday, and have noticed a bit more "presence" in the form of slight discomfort when sitting down, so the Aleve was definitely helping with anti-inflammatory and pain. Still, it's just minor discomfort that I'm more conscious of during waking hours than before. I've taken an Aleve periodically when necessary - mostly when anticipating coitus (Big Bang Theory anyone? ) as I do experience some burning and minor pain post orgasm so far. It's manageable though. In fact, the orgasms actually seem more intense now than before. Perhaps a nice bonus in turn for losing ejaculate.

Still taking the Flomax, I think I'm going to finish out the current 30 day prescription as directed and see if I can taper off the Flomax as well, or at least move from one pill twice daily to one pill daily.

Getting back to my normal diet as well, for better or worse LOL. Definitely nice to be able to enjoy the occasional alcoholic beverage and/or caffeinated beverage without significant negative impact.

Post Edited (HitchHiker) : 3/30/2016 7:14:36 PM (GMT-6)

Michael_T said...
Glad you're doing well. I think the most lingering SE for me it that it was difficult to sit on hard surfaces for quite some time. My urinary problems were pretty much gone and then I started IMRT (I had combo treatment) and that stretched stuff out a bit longer. But I'm doing fine now. I wish you continued success!

Michael, I agree. I've noticed since stopping the Aleve regimen that the "sitting on a golf ball in that area" affect seems to have returned to a limited extent. Again, it's not painful, just a conscious awareness that something isn't entirely normal. I'd rather deal with this than stay on the drugs, never been a big fan of drugs as a general rule. Glad to hear you are doing fine, I wish you continued success as well!

Thanks for checking in. Several years out, I'd say my urinary flow is about 80% of what it used to be with no drugs. Every once in a while I take a Rapi-flo just to see the effect, but overall I'm more than okay with this level.

Good luck on that first PSA! I was on HT so my PSA scores weren't meaningful until after that, but they've been pretty darn good since and I'm sure you'll do the same.

Tall Allen said...
You might want to try coming off the Flomax sooner -- if you need still need it, you can always get back on. With HDR monotherapy, symptoms usually don't last that long. Does daily naproxen prevent the orgasm pain? Maybe they touched a nerve with a catheter.

TA, I was on naproxen for about the first 30 days after my HDR monotherapy, but I have high BP as well so I was motivated to stop naproxen sooner rather than later. I didn't have pain early on, but that could have coincided with being on the naproxen now that you mention it. I will test the theory this weekend (when I next anticipate coitus ).

I'm pretty much on the Flomax by choice, I suppose I could try tapering off sooner rather than later as well, will give this some thought, thanks for your input as always.

HH, I had IMRT after my HDR brachy so that extended things. I was taking Rapi-flo daily after my IMRT and pretty quickly I cut that back to every other day. I was probably taking it once a week for several more months--the day I would take it I'd be back at 100% and then over the balance of the week it would drop down to 80% and I'd pop another. Then I realized, "hey, this 80% ain't all that bad" and I just stopped.

That said, I still take one on occasion just so I can remember what 100% used to be like and make sure I'm still okay with 80%.