I have Dr appointments with both my Rad Oncologist and Urologist (Wed & Thurs resp.) this week. I thought I would run my recent history and thoughts by my educated brothers here!! I have a somewhat more faith in the knowledge and experience of this group, than my professionals. My PcP has no clue about aPC other than what I’ve told her. My Urologist cuts for a living and last visit was talking about snipping my balls due to my adverse side effects to Eligard / ADT. My RO, I believe should be out of the picture at this point but just wants the annual $$$$$! Sooooo.
History: (what I can recall)
Dx’ed 4/2017 w/PSA 11 (no T results) Gleason 8 with no met cancer spread to adjacent glands or bone. I opted for a regiment of 1month of Bicalutamide and 44 RT with 18mo Eligard. (bicalutamide was inadvertently refilled for 6mo’s(long story))
Treatment:
*Last 3mo Eligard injection was Nov 9th 2018 (completing my 18mo treatment (20mo actually because of gaps while changing Dr’s)). PSA=<0.1 and T=18.
*6 month Follow up May 9th 2019 W/PSA=<0.1 and T=19. Side effects the same!!! Action, wait 6 more months and retest.
*6 more months is now. PSA=0.1 and T=103. Severe side effects mostly unrelenting / worsening to include speech issues!! Action, TBD!!!!
Summary:
I am thinking that it’s going to be another 6 month of wait and see?!!!!
Are my thoughts in line or do you think that there is a possibility of surprises?!!
I know I’m going to hear “what are you, some sort of dip-shit? You got this licked!! Keep fighting!!!” And I get it!!! But I really want to get this ADT behind me to “mostly” see if I’ll get my brain back. My body’s recovering would just be a bonus at this point. I can live with that easier than being soooo stupid!!!
No joke, I’ve learned a hell of a lot on this site but unfortunately, I forgot most of it!! CRS syndrome (can’t remember shit).
Constructive comments please!! Thanks in advance!!
Jc
Ps: FYI (and this is for the facts, not a pity parade!!!) I’ve been keeping a log of side effects as I’ve been going through this hell. Not in any specific order but I recently rated pre-ADT and NOW!!! I need some relief from this shit!!!
I never really presented it listed like this to Dr’s but I plan to this week!!!
List of ADT issues
My old normal 4/17 * Now 11/10/19
Ratings 1= good & 10= bad
1*10= Cognitive decline (items included within list below)
I’m in RI. I searched the area for MO’s and there are a bunch!! Good, bad indifferent...who knows!! I’ll bet someone here does!!
I checked into the PCRI website and will send my info to them as well.
I didn’t plan on coming out of there any lighter and feel good about having some time on my hands to make my decisions!!
Looked into the Vantas and see the SE’s are similar to Eligard (severity unknown) so I’ll be stirring away from that for now!! If I’m told by my Uro or RO that I should return to ADT, I’ll sit on that info until I hook up with a MO in the very near future!!
I will look into the supplements as well. I read a lot of your post and feel that you really know your way around that stuff!! I am approved for RI Med Marijuana and tried it briefly. For a host of reasons stopped short but things have changed so I can try again now!!
Already sent PCRI helpline questionnaire in!! I’ll give that until tomorrow so I don’t double dip!!
Often questioned the metering of THC because out of ignorance, I bought vap! Need to go see my bud-tender again!!
Spent time studying estrogen patched as an alternative to Eligard! Like what I read but like not needing anything too!! I like knowing of other options because I hear that patches come with a fight because not SoC!!
I don’t believe that I’ll need to make that decision in the foreseeable future!! You got to believe!!! Right?!!
I like Nalakrats advice👍. I would also try CBD oil for neuropathy and melatonin for the sleep problem. Just remember not all melatonin is the same. If you need a brand recommendation send me a chat.
Once again, out of ignorance, I tried CBD only in vape form!! The younger me, didn’t mind the bones but not now!!! I read a lot of material about the benefits and plan to try again and will likely try oils as $$$$ allows!!!
For years, I have enjoyed a beer or two after a days work or just hanging around on a day off!! I also enjoy a glass or two of wine with / after dinner. Likely above moderation but...... so be it. After experiencing a couple adverse reactions from combining the above with my now taking Ativan for extreme bouts of anxiety, thus prompting me to give up yet more quality in my life. I noted in my list that sleep had improved upon doing this. Being forced to wake up for pee breaks and pain now and thus improving my sleep patterns and decreasing my insomnia!!
Prior to this, I took 5mg x 2 of Nature’s Bounty “Bi-layer” time-release Melatonin. I don’t know how or if this helped me get to sleep but nothing helped me “stay asleep” possibly caused by my alcohol consumption.
I send you a chat for your information in case of future needs!!
My good, I meant use the CBD oil topically on your feet. I don't see a chat from you so I'll just send you the melatonin brand I use through thi chat feature on this website.
Like we talked about before. I feel ADT really has affected my mind in so many negative ways. Many I have to just laugh about when they occur. Hey if we can't laugh about it what's left to enjoy?
Old info. Just carefully write down your questions in descending order of importance.
Have someone with you to also document the answers for review.
I try to keep it lite but levity wasn’t in the cards yesterday!!! Very confused and aggravated prior posting out of despair!!! It really really sucks out loud to know things but you just can’t bring the pieces together!!!
After reading the comments within, these will be kind of do nothing / dog and pony meetings with no action planned on my part at this time. I originally stated that I was going to give them a copy of my list but now I have second thought about that!!! I feel I need to just walk away and peruse an personal advocate to help with my decision making!! I’ve been using HU / Malecare for this and I am quite satisfied so I plan to continue.
My RO yesterday, admitted to knowing about these cognitive complaints and quantified it as about 5% of all ADT patents!!! Those with severe symptoms being far less!!!
He is a rare one though that admittedly had a colleague that had them and had to leave the practice!!!
"Are my thoughts in line or do you think that there is a possibility of surprises?!!"
Oh yeah...always surprises. But being informed can lessen the blow.
I'm working on a book about this whole experience and don't mind sharing the opening portion of a chapter on the disease. Send me your e-mail and I'll send it to you. [drwrite@drwrite.com]
And BTW, my Oncologist made the point that Oncologists and Urologists don't play nice in the same sandbox.
Sent you a message with my e-mail address. Got to go to a separate device to e-mail you but will do so soon!!
I have learned a great deal on this site but as stated have trouble retrieving that at this point!!! Its 24/7/365 of where’s my keys!!!!
This post was a beneficial refresher in the fact I learned to take no action at this time. Get an advocate and regroup prior to making life effecting decisions!!
I know enough that I am not under extreme pressure to make snap decisions since I have seen my numbers prior to my appointment!!
I have in fact fired 2 urologists for various reasons and ended up back with my original one (who left his practice for another network / hospital) which now turns out to be a mistake!! I plan on these being a type of closure meeting for both my Uro tomorrow and RO today.
I had the same thing, G 4+5 (contained), 78gy proton, 18 months Lupron/Casodex. I believe 18 months is standard now, so you are done. 11 months since ending ADT, PSA less than .1, T =54 (up from 12). Still hot flashes, etc. See my uro next week, maybe T shots?
Sounds like you're unhappy with your docs, not good, find someone else, don't put up with that.
Very similar!!! From what I’ve read, I’ll be surprised if they give you T and feed the beast!! I know mine and your’s coming back slower than anticipated but I plan on staying the course naturally. Especially if I hope to avoid IADT in my immediate future!!!
Below is a excerpt fro a response to lulu700 (above). And I have in fact fired Dr’s along the way. I am not completely dissatisfied with these guys, they both listen well (compared to others) and my RO recognized my cognitive complaints where others would not. They (as I suspected) have worn out their usefulness or were originally in the wrong position of control.
Mine was a recipe for disaster from the start!! My PcP died and I was going to a walk-in for my medical needs in the interim between locating a replacement! They actually ordered the PSA bloodwork at a regular yearly DOT physical. Being a kind of low rent setting, I searched out a Urologist on my own. Which was this Urologist. Knowing what I know now, that should have sought out a Medical Oncologist. Live and learn!!!!
I couldn’t be more surprised if I woke up and my head was sewn to the carpet!!!
I went to my Urologist today who suggested that I receive testosterone therapy!!!! Explaining the my T of 100 is enough for the PSA to react if cancer was active. With my PSA at 0.1, he has no problem referring me to a specialist!!
No promises for relief of my side effects but nothing ventured, nothing gained!!!
Sooo, I was misinformed before I responded to your comments!!! Sorry for that!!!
OK, saw my uro, he says to do another PSA in three months. He said of my 58 T level, that it may take a long time, which is unknown, to come up. I asked about supplemental T therapy, he answered, "no way!", at least no way with my G4+5. He also said it would be ok with G6, and maybe ok with G 3+4, but not ok with anything higher. In addition he said that if/when my T level goes up, my PC may return if there's just one cell wandering around.
I’m sorry to hear that!! The differences between is you and I are that I’m cute, I’m G4+4 and my T at 103! My Uro stated that 103 is high enough for the PSA to act up if active cancer was present!! Maybe 35 is not because he told me that my earlier 19 might as well be zero!!!
I am being referred for T therapy with an agreement to meet with Mr T and talk in depth regarding the pro’s and con’s prior to commencing any treatment.
Second option is the waiting game to see if, in a number of months, see if my T rises on it own!!!
I understand that I will be monitored very closely and if in event the PSA does raise (quickly) then we stop and I’ll need to revisit ADT or surgery!! He will not support Estrogen Patches due to my past coronary artery disease!
The intent is not to attempt 500 or greater, but maybe 2 or 300. just enough to hopefully reverse some of my side effects!!!
i’m excited about a faster attempt to return the old me but more confident in the slow and steady!!! Listening and talking won’t hurt anything!!!!
My t has been 3 for years now .. I feel your pain .My Docs say the same “ no way” ..” just one cell” ? Hmmm? We are told that there can be 2-3 million pc cells not able to be seen on scans . I was 4+4 ...The good news is that we don’t have pc chomping us down at the moment ..run with it . Live well and love life . Thanks for getting back to us .. Scott
Nah, just back on Lupron. My take from uro's comment about "one" is "who knows", but why take a chance with T therapy, wait and see as T levels come up naturally. That's what I'm going to do.
With whats left of my squash, I’m sit around thinking! Here I’m thinking of changing my mind!!!!
I know opinions are like A-holes. Everyone has one and most stink!!
But here’s mine!!
This beast is most likely going to get us!! Not in and of itself but it’ll cause it!! It’s only a matter of when!!
Variables are how much money you can throw at it, how well you you can take a punch and another, maybe luck!!
We fool ourselves in thinking the real fix is just around the corner, when all thats there is..... another corner!! So I follow the SoC and allow my QoL to falter!! I exchange good years (by turning them to shit) for what “should” be shitier years by design (old age)!
You guys talk about one of them little bastards lying in wait, well I agree!!! For 99.9% of us!!! We take leaps of faith with our Dr demands but they’re not the ones having their legs taken out from under them!!! Their claims of understanding is like a DINK writing a book about raising children in poverty!!! Not living it!!!!
You can stay a PoW by sitting in a cage getting poked by sharp sticks or run for the jungle!! You get caught, all you do is take a beating and start over!!! I’ve been taking that fucking beating for the years!!!
If with the status-quo, I come out on the other side, I’ll be too freaking old to take advantage. Just sit all day feeding pigeons?!!!
Fuck it man...... run!!! Just watch where you’re running!!!
The good news for me is that my GP told me that he thinks that heart problems will get me before PC does, so I can say the I beat PC! (but I don't have heart problems yet, so I'm a little worried)
Metering = I meant that I read that guys take Xmg at a time. The way I bought it, you need to feel it before you know it’s working. Didn’t like going around buzzed all day!!!
I was sitting here trying to organize my thoughts prior to meeting with these guys (to ask the right questions) and found myself confused as to why exactly am I going to these guys anymore anyway!!! I’m deathly afraid of being sentenced to years of ADT and continuing my nightmarish quality of life!! I know I’m preaching to the choir with you but I thought it would be fun to actually post my lost of side effects and see what comes of it!
Mine was a recipe for disaster from the start!! My PcP died and I was going to a walk-in for my medical needs in the interim between locating a replacement! They actually ordered the PSA bloodwork at a regular yearly DOT physical. Being a kind of low rent setting, I searched out a Urologist on my own. Which was this Urologist. Knowing what I know now, that should have sought out a Medical Oncologist. Live and learn!!!!
My first impulse is to continue to beat this beast into submission but for what, if I give up all that’s good in my life!! Prolonging my life to be a nonfunctional, stuttering, boring, grouchy, fucking eunuch is not living in my book. It’s simply existing!!! I’m starting to find alternative that my find the middle of the road. We’ll see.
As far as I am concerned, the members here offer what they have found to be genuine / working treatments whether they are natural, prescribed or supplements. Most of these come with an out of pocket costs. A man like me that used his brain as much as his arms for a living and lost all that, simply cannot try all or any of these! Being fired for.......well..... look at the list, limits my options! I have trouble enough supporting my yacht and race horses never mind my health!!!!!
Yes, I really really really need to get back to my ideal fighting weight of 225#. I maintained that weight for yyyyyeeeeeaaaaarrrrrssss! Now @ 285# it disgusts me but one can only be so miserable! Got to get relief from some of my “Steven King” list of horrors before adding to it!!!! Plus now my A1c is reflecting this being >6.0 for the first time ever!! And yes, I have a history of coronary artery disease too. What a fucking train wreck...am I right?!!!
Dear sir , I relate to your plight . I’m in the same boat . But you have the family and that wonderful porch to maintain . I’ve been unable to work and on the appreciated but poverty of $40 a day from ssdi ..for myself my wife and dog . My wife just got a serving job at a local Thai place at 56 years old . Not my proudest moment . I’ve failed in just about every respect in this society . poverty ain’t no joke . Still I’m alive . I have love from my wife and puppy and I search to find some solace in my chemically altered existence .. you aren’t alone in this bs . I m 2 years ahead of you in treatments . It is amazing how low we can go and still exist . I’m thinking that I should be more than grateful that I have no visable signs of pc or Psa . My mo says he’s got 100 guys that that would kill to be me . APC is what is for us men . A real MF ! So basically Ive felt like shit everyday for almost five years without t . I try not to complain or explain on hu because we have so many members going down in flames as we speak . I’m one of the lucky ones . Whoo hoo ! What a freakin ride ! I appreciate you speaking you truth . We share that ... If you need help . We can come and swab the deck of your yacht nd care for the race horses too . Brother I am all of these things that you describe. I m at the behest of ssdi and Medicaid ,...no money for out of the pocket miracle treatments .. I had much anger and rage at being whittled way to near zero . Finally I’ve decided to go mellow and find happiness where I can . No more big ego or dreams of ruling this earth . Diminished capacities is me .. I had a great mentor on this cite three years ago when I joined . Nameless 9999 he was . A active military vet of many wars he had me working out five days a week although I was in complete lethargy with no energy . I started to feel better . Then he said “ living with APC ain’t living” and took his own life . I was devastated for months afterwards . The man I was following decided to check out baby . And I understood this .. I’ve come close over the years at calling it quits . I thought that every guy with a stage #4 dx should be handed a secret decoder ring containing cyanide tablets . I think that you can adjust or a least accept the bs and keep living . Day by day brother .. hang in there ,you have so many reason to endure .. Good luck with the docs ... they basically see us as no Psa and that we should be grateful to be alive .. even in this altered state we must make the best of it ..who’s to say if APC comes ripping back on me that I won’t wont want to continue at that time . For now I owe it to my innocent bride to survive .. I bitch and complain cry and commiserate with myself ,this helps no one . Especially my wife . All I can say to you is to Hang in there it can always get better but also it could always get much worse ... I can no longer count on my strength or cognitive abilities to get me out of this . It’s like standing on shaky ground ... unich away ! Keep striving to save yourself . 😂😫😭👣
Well, you’ve managed to roll wisdom, sympathy, misery, inspiration, humor, darkness, light and much more into one paragraph!
We all find our niche to deal with adversity be it health, financial, emotional etc. Most of mine are sitting on that porch, one has been in my bed for 44 years and then a sprinkle of humor.
Like the day I posted this, I have my dark days filled with self pity and gloom and doom but I have not been in this that long. Sure I want the old me back but I am fully aware that I am so much more fortunate than thousands of men, women and children that have it so much worse than me. That thought actually the slap that gets me out of my occasional funk.
In addition to this, As I have become more educated in the world of aPC, I don’t believe that I had a lethal Dx. My diseases was caught by accident via bloodwork during a yearly physical exam. I have never felt a symptom of this disease. I have never really dwelled on death but I have a new appreciation for it. No normal person walks around thinking that “I’m going to die” but aPC sure puts mortality in the limelight and in perspective!! So, maybe it’s not (naturally) in my immediate future, I have now prepared for it!!
The simple truth is that ADT (alone) kicked the living shit out of me!!! Physically, mentally, emotionally and trying for spiritually. I hang my hat everyday on the fact that “this too shall pass” when this crap gets out of my body. Am I a fool..... we’ll see!! Will I be the old me..... I doubt it, but am I comparable to Nameless... no!! He obviously knew and accepted the inevitable and decided not to wait for it! I recently had a cousin that did the same (only with COPD). Whereas my feeling are mixed, but I understand am so sorry for the pain he was in while making that decision. We communicated often and I had no clue!!! No-one did!! So please, if you’re having those thoughts again, talk to someone that can help. Fuck the pride!!!! I’m not there yet but I know the wear and tear that the 2 years of my shit has put on me so far, and have no clue how I’ll react if it continues for another 2 or more years!!!
So, you’re 2 years ahead of me, and have settled into mindset of “say la vee” which could “Very well be me” in a couple years..... I know this!!! Until then, do what I can to fight it and I do my complaining exclusively here under the cloak of anonymity which makes it possible for me!
Good talk!!! Stay strong!!!
Jim
Ps:
This post has been one tremendous vent for me! long over due!!!
Jimhoy,I’ve had close to five years practice . We must find peace of mind in all of this . Living with no hormones is a sob.. plain and simple . Ask anyone that does .. the docs they deny much . They figure “ you’re still alive “ “ make the most of it “ . Because they see so many stage fours going down in flames . You and I are on fire,but APC is not running us down in to the pit right now . Enjoy whatever you can ..✌️
Not feelings those symptoms of APC is a blessing . Take it from me . That’s my fear not to go back in the jaws of the beast . It’s like I escaped hell . Even adt and castration don’t compare to the brutality of pc gone wild . Let’s not let that happen .. R.I.P. nameless .a man that’s seen many wars fears not death . You are cracking me up now .. You’re going to get to a better place . ..I’m not relinquished to modality I’m seeking life each day . Vent on ..it helps me to bante4 with brothers in arms . Today was a great day . Chalk one up to the good side . I say as long as the good outweighs the bad I’m sticking it out ... TGIF
Don't do more than 18 months of Lupron or you will develop CRPC and then the real problems begin. They gave me 6 months of Lupron and I had horrible side effects and will NEVER do it again. I use PCSPES daily along with bicalutimide every 2 months and my PSA is stable for 3 years now. Be careful of the "Scare mill" the wrong type of docs put you in like they tried to do to me.
There would have to be one monumental surprise to prompt any discussion of resuming Eligard in my foreseeable future!! I wish I had posted this prior to my confirming my appointments so I could save on my co-pays!!
I noticed you commented about PCSPEC on a previous post and I started looking into it but it fell through that gapping cracks between my ears!!!
I had saved the web page and just went there again. I’m sure my Dr’s won’t offer anything about that so I might bother you about it at a later date.
As others make their recommendations regarding supplements and natural treatments, tough decisions will need to be made to stretch the same nickel! Not that you can put a price on cancer cure but reality dictates that I have to!!
Wow! If you view my profile you’ll see my numerous treatments including intermittent ADT. I hated trelstar , Lupron and casodex but didn’t react quite as badly as you have. Nevertheless I switched to estradiol and am glad I did. ADT is a man killer imho.
But I’ve really taken this disease by the horns and lost 40 lbs. by eating mostly plant based foods, and exercise daily. If you are sedentary , you’ll feel awful. I also take metformin, celecoxib, rosuvastatin, dutasteride and duloxetine.
Bottom line is I need to dump the vape and buy drops. Try 1, 2, ? A night until I find a comfortable amount.
Supplements;
Going to try to work them into the budget!! SSDI won’t make anyone wealthy!!!!
PCRI;
Responded my e-mail by leaving a message late the evening (called the east coast from LA) saying that they do not recommend MO’s. They are much to small to do so (in their words). I have however developed a list and started research on some candidates. Thanks again for the heads up!!!
Update;
Met with my RO yesterday who summarized my condition exactly how I expected to hear. No surprises and it ultimately another 6 mo wait and see! The appointments just happened to land as they did but I met with my Onc today and expect the same!!
Executive decline is an extension of cognitive decline where your occupational skills are effected (e.g. multi tasking, create / comprehend spreadsheets, scheduling / planning, budgeting, etc) as I understand. I never had my own private portajohn!!!
I don’t think anyone plans for this kind of shit!!! I kind of live like a scrooge to maintain my savings to support my wife after my demise. She may not tour the world but I believe she’ll have a roof over her head!! Once aging, there goes your QoL!!!
I’m still under the insurance umbrella from my union. At 63 (64 on the 25th of Nov (anyone wondering, I take a size 12 Caribbean cruise)) I can buy my cadilac plan until I am eligible for Medicare. That’s only $12,000 a year, plus a $4,000 initial payment out of pocket but I’m sure medical could dwarf that number really quick!
When ever I go to the Dr’s or hospital, it’s always in the back of my mind that they’re coming after my savings and won’t stop until they get it!!!
Been through the legal route and unless we both go down, I’m told they can’t do that. The kids will get screwed thought!!!
I know it would be next to impossible to do, but I would try to put my pride on the shelf and “work the system”. We’re worked had all our lives and watch people that don’t, live pretty good on programs. They shouldn’t have a pot to piss in or a window to throw it out of, but they have the cars, houses, cloths, etc that workers do?!!!! I look at as being better than knocking off convenience stores for money!!! Anything for my family!!
When I was referred to my Oncologist by my Urologist, he told me he was a little surprised, as "Oncologists and Urologists don't usually play well in the same sandbox."
I get that from a number of people!!! I have made a list of local MO’s don’t have much choice other than go by their ratings and profile.Got some time to massage this as one of my two has already advised (yesterday) to wait another 6mo and test again.
As far as asking for a referral, I did that for my second opinion at the time of my Dx. I ended up one door down in the same office!!! I don’t see that as unbiased!!
Just sent this to bobdc6. I might have caught a break!!!!
I couldn’t be more surprised if I woke up and my head was sewn to the carpet!!!
I went to my Urologist today who, after a brief chat, suggested that I receive testosterone therapy!!!! Explaining the my T of 100 is enough for the PSA to react if cancer was active. With my PSA at 0.1, he has no problem referring me to a specialist!!
No promises for relief of my side effects but nothing ventured, nothing gained!!!
Point being, the Dr performing the T therapy will be testing PSA and T quite regularly so the 6mo thing is off the table!!!
This is awesome news my man . I want you have a great outcome .. Good luck ... Maybe you can put the executive back on the incline and get some good days going on . Very hopeful for you . 🥳
Don’t really know what to say! I surely don’t want to say the wrong thing in my diminished state. It’s not like you lost all to the bottle!! You were robed like so many of us!! All to different degrees but still robed!!! There is no shame in this!! If you have survived for two years in this situation, then you’re a proven surviver!! If down sizing your house helps you survive longer, so be it!!! Sounds like you would do that whatever it takes for you wife!!! Please hang in there.
Jc
As far as that PoS cousin.... fuck him....DON’T DIE and he gets NOTHING!!!!!
I am from California, Here are some of the most common signs that you have Dupuytren’s and it may be progressing :
Lumps and pits start to form in the palm. The lumps may be sensitive to the skin's touch and feel attached.
Thick cords may grow from the palms to the fingers and expand. The last two fingers (ring and pinky fingers) are most commonly affected.
Both hands may be affected, but one is usually worse than the other.
Over time it may become difficult to lay your hand down flat.
Although the contraction isn’t painful, it can become increasingly difficult to use your hand. It can become harder to shake hands, wear gloves, and even wash your hands.
Straightening your fingers may become impossible, and stretching or splinting your fingers won't help and may make the condition worse.
I hope these steps will help in solving your problem control easily. If you want to know more about Dupuytren's contracture,Early signs of dupuytren contracture.
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