Hi Akai... it has been a while since you posted this. What is your update on the strictures or this new Optilume? I hope you are well. Thank you. -JR...
Hi Teddy… I have had intermittent hemorrhagic cystitis with clots for several years now. This started 2 years post treatment with intermittent gross hematuria. In my case, I had a cystoscopy done and...
Hi lanky… I agree with Michael T that you are basically doing a delayed triple play which many guys have done, especially 7+ years ago when it was advised for high risks, high Gleason score guys. So...
Not 10, but 7 (feels like more than 10!) You are getting treatment at one of the best cancer hospitals in US and you should do well with your treatment choices. There are so many tools in the...
I will read into this Akai. Sorry you got to deal with the strictures. Good luck old friend. Take care. -JR...
Hi Bill... Some travel (so I don't shrivel and die!). But we do it as safe as we can. ADT, not fun. I wish you well on this round of the journey. Take care! -JR...
Hi Ocean…. Like you I have had burning, but mine started directly after IMRT and has never gone away (5+ years ago). I have not had any UTIs. Mine is directly related to urethra damage from the...
Hi Bill… haven’t been on for awhile, so just catching up. Sorry to hear the recurrence news but it sounds like you are getting a jump on them the sink, again! If you ever head back this way let me...
I haven’t been on in a while (mostly on Prostate Cancer forum) but I thought I would reply to this thread as I have had a GCM for about 4 years for non-diabetic hypoglycemia. My A1C is great, I just...
Hi Gunner... A vent now and then seems most appropriate to the guys who understand the venting. You have been through a lot for many years and with a good attitude to take it all in. And to top it...
Hi all... I have been on healing well for many years under Prostate Cancer forum, but first time on this group. I have non-diabetic hypoglycemia for past 6 or so years. My endocrinologist put me on...
Good post and good news Dave. Always nice to hear of surgical success stories. I’m sure the G9 was a shocker but hopefully it won’t matter. Good luck on the ED front, with good wife support, you will...
Good luck buddy. Been in your shoes and I know it don’t feel good. Let us know. Take care. -JR...
I did radiation when I felt sensitivity around my nipples and worried about Gynecomastia. They did 6 grays to each side for 3 days total. Sensitivity stopped and so did the growth. They also have...
Sorry to hear about Fairwind... I remember his post also. Always rough to hear about guys who have been around here helping others deal with their own PCa journeys. I also wish him a smooth journey....
I didn’t get the email or letter yet of the new fee and I was just at POS to see Dr Lam a couple of weeks ago and signed all the paperwork. I guess I have to re-read what I signed. I still see Dr Lam...
Interesting topic... I have suffered from tinnitus in both ears for 30 plus years since my paratrooper days. It’s as if I still hear the jet & prop blast. Very loud some nights, sounds like an alarm....
Glad you got through the first round. I agree, the port is best. I had one put in for my chemo rounds and it made the treatment setup way easier, plus, they took blood draws and when I went to the...
Damn Randy, what a journey you have been on. I am glad Dana Farber is talking to you quicker. I hope you get the treatments you are looking for and you get positive Results. You mentioned how this...
Congrats Cyclone... always nice to find a doc you can trust, and who will care enough to read your file first. Take care. -JR...
Congratulations NJFred! We love the good news around here! Take care! -JR...
I will triple that Cyclone comment... Cyclone, we all appreciate your insight and help, especially for the high risk and stage 4 guys! Cheers! -JR...
Hi Donna... still seems like HBO would serve him well or at least some benefit. That is what it is for. Although the process itself is fairly taxing each day and if you have a facility close by. I am...
I just replied to that last post Donna. Maybe some help there for you. -JR...
Hi Donna. Sorry Randy has some escalated cystitis issues... they suck. How was he diagnosed? By cystoscopy? The first line of any treatment for cystitis is Hyperbaric Oxygen, especially for radiation...
I have recently had many episodes of gross hematuria. Started back in December but only a couple of times and not much volume. MO ordered CXBkadder test to check for bladder cancer markers. Nothing...
Cyclone... You can almost taste the yew! (And then you can’t taste nothing). :) JR...
Congrats Sonny. 60 is a damn long time. I did 40 and they recommended 10 more near the end and I passed. My Urologic Oncologist at UCLA also suggested recently, after diagnosing me with hemorrhagic...
Right Manich... My RT was both HDR Brachy and IMRT as part of my primary treatment. I did try edibles during my chemo treatments, however that did not stop the dysuria or enteritis I was experiencing...
Well fiddle... it seems the numbers for long term side effects that go south like mine are down to 5% or less according to the literature. And that is supposed to be dropping based on better...
Duck... it was for the radiation cystitis and radiation enteritis issues primarily but also for the radiation proctitis. It is said to help with all radiation damage issues although the main doc...
Thanks all for your support... I will update again after my cystoscopy on the 12th. Take care. -JR...
Unfortunately within the last few weeks I have had days of gross hematuria. Not just a little bit but streams of blood when I urinate. Honestly it is shocking to see, especially when blood clots come...
Sounds like you have a good start to your treatment journey. It helps to have trust and good experiences with a good cancer center. Listen to Mumbo, and the Rad Onc for the IMRT... crucial to miss...
Hi Minn, I had some gross bleeding also and I am 4 years past radiation. I did 40 hyperbaric oxygen treatments and I got some relief, it might be worth it for your husband also. There is another...
I agree Michael, a blow to the RO team at UCLA. He was a pioneer with SBRT....
I agree... get the cysto if offered. You might as well see what is going on, although blood in urine, mostly micro hematuria, that you can’t see happens months to years after radiation. Gross...
Hi Rancher... I had the port put in and for me it was a blessing in that other doc/hospital visits they would just take blood or give me meds through the port. I left it in after chemo for my monthly...
Interesting topic... I am currently sitting here with my face burning from applying Efudex. It is a topical chemo that you apply 21 days, 2x a day. Around day 8 it feels like you are applying lemon...
I was on Flomax 2x a day to help with the dysuria and I dropped down to 1x a day so I think it helped. For the RC, I had a gross hematuria event a week after I finished 40 treatments. The HBOT doc...
Good luck... welcome to the dive chamber club. -JR...
Damn Sonny, you made me cringe with the catheters updates... I hate those things. As a recent HBO treatment guy, I wish you luck and hope it gives you some relief. I believe it gave some improvement...
Interesting topic... I was just discussing this same thing with some friends. For me this journey changed my outlook on being a work-a-holic. Now I tell family and friends that I look forward to...
I also had the fiducials placed at the same time I was prepped for HDR Brachy. When I started IMRT I also had the 3 tats placed... although as my treatment plan changed 2 additional tats were added...
Bummer for the bleeding issues. I have had 4 colonoscopies in the last 4 years due to bleeding and previous polyps found. You have to go with whatever your doc orders but if they are up there, you...
Hi Sonny, sorry to hear about your issues. I agree a center of excellence like Mayo Clinic is a better option. I have had a plethora of radiation damage issues to almost all areas of my pelvic area....
Welcome Jesse, sorry you have to be here with the crappy hand you were dealt but glad to hear that the treatments so far are having a great effect. A supportive wife and great kids always helps (I...
Hi Hersheybar... just catching up on HW. Sorry you had to join this club and G9ers thread. You are young, which they say helps in recovery, but I know it didn’t make me feel any better about the...
Thank you Cyclone! Happy holidays to you too! I am a little better/and maybe a little worse. I had a gross hematuria episode two weeks ago after I finished the HBO. Was surprising to me and my...
That is a trend worth the targeted biopsy, especially with the family history. Good luck and keep us posted. -JR...