Hi everyone, here is my story, in mid Dec 2019 I was diagnosed stage 4 prostrate cancer having had no previous symptoms. My gleason score came in at 9 and a PSA of 50, quite a shock. It has invaded into my bladder and closed off my left urethra, so only one kidney is now working, having a stent put in next week, hope it is successful. Its also in my pelvis which now explains my stiff hip. I started daily Cosadex on Xmas day and had an Eligard injection 14 days later. On Wednesday 29th Jan I had my 1st Docetaxel infusion which I reacted to, but with the help of some type of cortisone shot, they managed to proceed. Now the Steriods have worn off, I'm feeling pretty tired. I'm eating a drinking and OK and apart from some mild pain, I feel as good as could be expected, cheers😎
First Post - Doing the Doxydoe - Advanced Prostate...
First Post - Doing the Doxydoe
Greetings, and welcome to the forum nobody wants to be qualified to join 
My history is in my profile, which I'm just about to update to add my newly found neuroendocrine PCa. Coincidentally, I'll be having a stent put in this coming Wednesday to fix a blocked ureter, and will be starting another round of chemo (different drugs) a week after that. I've also had docetaxel, and had a hypersensitivity reaction 5 minutes after the start of the first infusion. They added cortisol and more benadryl and kept going. I got through all six cycles without any major complicatons after that, except for significant problems finding veins for the infusions. I'll also be getting a port for this next round.
The nice thing about this forum is that no matter what you're experiencing, there's probably a least a handful of members here who have dealt with it before and are eager to help the next guy through the process. This weekend might be pretty rough for you now that the steroids have worn off, but you'll begin to bounce back rather quickly and then it will be onto the next cycle. Good luck!
Just finished 6 cycles of docetaxel in Nov. My experience with it was not as bad as everyone said it to be. On the fourth day after infusion, I generally felt tired, flu-like but after that it always got better. One suggestion is to exercise whenever it is possible. Take a walk, go to the gym, do some cycling. It helps a lot . God bless
Thanks for the tips on getting through, or living with this thing. Yesterday was day 4 of my 1st Doxydoe and the most uncomfortable so far. I like to keep fit so hope I can keep up my traning as you suggest. Thought's and prayers for you 😎
Just do what you can . Walking is good.. you’re getting hit from all sides now . It will take recovery . 🙏🏼
Welcome! I had both urethrasblocked with pc tumors. Foley and bi lateral tubes for a year and then stints until finally peeing again on my own. The adt and treatments can shrink the tumors and you will hopefully graduate from the stint back to normal. A bad urology is psychologically and physically draining . I’d wish this upon no man . The good news for me is I went into remission . I wish you the same. There is suffering . Beyond that there is hope for a better day . Take excellent care of yourself and you’ll get to a much better place. Good Luck 🍀. Scott Hang in there ! 👍
Hi Scott, wow, remission, I'm so delighted for you. I pray that it remain in remission "ad infinitum". 🙏🙏🙏
Your posts have given me much hope in this process so far. I send my best wishes for joy and happiness. Arlis
Hang in there Bear .. we’re all floating on the same tide. Flotsam and jetsam..🙏🏼
I'm in a much better place than when we first connected. Some emotional stability has returned but there are still days and moments of days when here it comes again. There is so much that's changed and so much of who we are and what we do is tied to that little head that gets us in so much trouble that anything to do with that(prostate) significantly rattles our cages. Those meetings I mentioned have helped me wrap my head around this new reality. Thanks for your help. Arlis
I like the way you describe it as a new reality, it's like changing channels and your now your having to play a different character. I feel your pain brother, hang in there 😎
I’m in 5 years with apc this month. Actually I had apc runnning through me for several years before I even went to the dr . Then it was almost too late. It’s a miracle that I’m even here brother. Just50 years ago they didn’t do what was done to me now. ( tubes out of back) 😖Five years castrated and still I have uncontrollable crying for no good reason at all . The good news for me is that those days are now far and few between . I was horrible for two years . A real Mad 😡 Man . Hang in there . In time you’ll get better . It’s not our dysfunctional little head that we are missing the most it is No T that drives frustration and neg emotions. we are supposed to go into zen mode and be calm to let pc go away . Yet lack of our male hormone drives us in the opposite direction... At first frustration and anger of the stages of grieving happened. I got caught in those two holes far too long. My passive wife experienced that madness. I took my anger out on her ... I’m better now. But still seeking forgiveness and redemption for her love .Dont do as I’ve done. Be kind to anyone close to you .. this apc is terrible on those that love us also . You’ve got a lot to live for . We will do whatever we can to hang out longer on this miraculous orb ..🌎
You're awesome Scott, you say so much in what you speak. Thanks. Arlis
If we can’t talk to each about this junk ? Then who? Try to keep each other afloat .👍👍😂
Thanks Scott, sounds like you've have had quite a journey. Mine has just begun andfor now I will take it one dance at a time. Everyone seems so familiar with all the medical terms, I guess I will too. I'd like to just hit the road and run away into the sunset in my van with the bride and hound...... has some merit me thinks 😎
I understand running away into the sunset.😂
Great attitude. You’re dancing . That’s what counts .
A year later lad...hows ye thinkin now...aye...having a crakin good time....al b.s aside...hope your still fightin the fight..b.w
Hi BW, I'm thinking it's kinda like a dream and I'm left wondering if all that really happened. It did and I'm so grateful to my medical team and brothers like here on HU. I trust you are doing OK too, cheers 🍻😎DD.
.1 ....4yrs in...hopefully many more
I would highly recommend that trip after your treatment.dx in 2016 I have ran the gauntlet as well and I take occasional roadtrips., the point is,live your life otherwise you get into a C FUNK RUT (Cancer) Each stage of my process hasnt been easy kinda like a gut punch with a very effective left hook. So find varied forms of distractions, good fortunes my friend.
Welcome to our exclusive club. This is an intense emotionally draining journey and unfortunately everyone's path is different. Had to have two stents in right ureter finally determined that it was not part of cancer and finally could drain my right kidney. Hated Casadex and Eligard but they caused the cancer to shrink half the size. Still having effects of Elegard and that was in May 2019 and this was all before RALP. Over 90 days past surgery NDPSA. If NDPSA until June, AMS 700 LGX will be implanted and spontaneity returns and no more shots or limitations on how often or long you use device. Best of luck in this journey. Arlis
Hi DBB, thanks sharing a small part of your story, it sounds like you've had a hell of a ride already. Cheers 😎
All these guy's have had a ride on this journey,. They will give you hope and encouragement and let us not forget, courage. This band of Brothers has helped me many times with dealing with this horrible monster that dwells inside. Welcome. Arlis
Great 👏...
surgeryencyclopedia.com/St-...
Stents are a piece of cake.... had many of them....
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 02/02/2020 10:42 PM EST (The Palindrome day)
I have 2 stents that are changed every 3 months now as opposed to 6 months. It’s an out patient surgery but it seems to take more out of me now than in the past.
to Hexadecimal 40....
I've never had a bad reaction to my in and out every 3 month "single" stents and I've had 27 of them. All of them were performed as an outpatient procedure in my urologist's office. I no longer have them done. Are you using the same urologist every time? Same equipment?
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 02/02/2020 11:42 PM EST (The Palindrome day)
Hi John, my urologist was unable to to it retrograde and has reffered me to this other guy who he hopes to succeed with an antegrade approach. My understanding is I'll be awake during the procedure, do you feel much?
I did the stints and tubes ,changing every three months. 3 days after a change I’d get a uti like clockwork. My plastic stents stayed colonized . Thus heavy antibiotics took me down hard . You’re ahead of the game if you don’t have uti’s .. it’s a totally draining experience. I wish you well!🧐
Mine ureteral stents are changed under general anesthesia in an OR via cystoscopy. My urologist does the surgery also. He changes them both with the same type of stents. On occasion I’ve had bad pain in the kidneys while trying to urinate. It does subside after awhile. The cystoscopy also causes post-op discomfort.
Thanks for the advice, I go in tomorrow to have one put in, I think I may have an external bag for a while to make sure the kidney is working. Did you have something similar at some stage?
Both of my urethras and bladder were shut down with pc tumors. I had tubes out of each kidney and a foley for a year or more. Good luck don’t fret . It must be mandatory for you to do so . Stints can get you thru .. Please let me know how it went today .👍👍😎
Hi Scott, well I have a stent in my left kidney now and no outside drain/bag, a great outcome. The procedure was bearable and the surgeon and his staff were wonderful. I had lots of after pain in my bladder and testicles which is slowly subsiding. I have gone from peeing blood, to rose and now kinda normal. Obviously bruised on my side and in time I'm told, the j hook inside the bladder will soften and feel much better, cheers and be strong my brother, 😎
Good job! Let us shrink down the pc so you can get the stent out.. My prob with the stints is mine were colonized a few days after installation with utis.. avoid those and your ahead of the ball. I had ball pain being castrated chemically plus rt. I chopped those puppies 9-17 and dropped lupron shots .. no more ball pain . Sleek ! No family jewels to protect. We just don’t understand how important and fragile our urology can be until we have a problem..It really is a miracle what modern medicine CAN do for us .. Your dr has you on a path to be better off .. It worked for me. I wish you the same. Heal up and recover well.. continued improvement to you . Scott
yep I once had a very high temp caused by a UTI and hallucinated...I still think I am....
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 02/04/2020 1:07 PM EST
My stints with the stents were always colonized with different utis.
cheers , I have stage 4 MCRPC as well , I did Zytiga and Eligard for a year and my PSA went from 78 to around 3 , then it stopped working and there was some spread , so next week will be my 8th docetaxel treatment , hang in there man .......
Hi MG, well its now a year or so since my post and what a year its been. Tamsulisin, biopsies, Casodex, Eligard, 9 shots of Docetaxcel, 20 IMAT radiations sessions, uteral stents, TURPs, TURBTs, catheders, canulars, blood tests,...... Phew! But today I go for another blood test to see what my numbers are. My last PSA was 0.01 and if it remains low my MO will keep me treatment free. No ADT, no nothing. I have responded well to the treatments, no stents, no incontinence and I while I have little Libido, it still works. All the best with your journey, cheers 😎DD.
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