I've been reading this forum for quite a while now and finally joined.
I've had Prostate Cancer for around 2 years now. Things looked great after my prostatectomy, but then my PSA started rising a year later. Got a PSMA scan and no mets were detectable.
Decided against radiation and went with ADT only. My plan is to do ADT intermittently to get the best quality of life possible. Just trying to manage this.
I've been on Lupron for just over a year now and about to start my first "vacation". Anyone else been down this road. Advice? Concerns?
Also looking to find the best supporting care in terms of diet, exercise, etc.
Thanks in advance for any help. Great to be here!
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Cancerfighter57
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I had a similar recurrence at a much younger age. Salvage radiation without ADT gave me another 7.5 years of undetectable PSA with a lot fewer side effects than ADT.
They recommend here to hit it hard & fast early on so the treatment has the best effect & you have more years of life therefore.. I was on vacations whenever the PSA came down to 1 or2 but it always came back to 18 or 19 before I would go back on the gravy train.
Now I have learnt to keep it under control by staying on treatment, ie; no vacations.
Interesting story. Just wondering what was your gleason and biopsy info at the start of your journey? Maybe you mentioned it somewhere so forgive me if I am asking for repeated info. Thanks!
Hi dagreer, it has been a long journey, so, 2011 diagnosed with a PSA of 9. Biopsy confirmed Prostate cancer, had radiation, Lupron & casodex 2012. First vacation of around 2 years. PSA up to 19, 2015, had 2 shots of LU-177. PSA down to 1.6.
Second vacation 2016 to 2018. PSA up to 18.6, 2020. On Firmagon ADT 2021 to 2022.
Third vacation 6 months PSA 9 again & now changed from Firmagon to Zoladex & have learned from my own experience & advice from TA & others that vacations only give the disease a breathing space to multiply.
I try to stay healthy with exercise, clean water & the supplement tumeric every other day mainly for arthritis.
I hope you are aware your decision to reject radiotherapy of the pelvis and prostate fossa plus 6 months of ADT you were refusing a treatment which could have cured you or offered a long term control of the cancer.
Even using intermittent ADT, the cancer eventually will become castration resistant, and CRPC is lethal.
I had the same problem deciding about radiotherapy of the pelvis and fossa and I understand your decision.
In retrospect, I recognize that delaying to irradiate the pelvis even when using ADT may have been one of the reasons I am dealing with a lethal cancer today.
tango. Very sorry to hear that delay happened. After surgery failed in about 8 weeks for me and psa started to climb I went for salvage radiation. My RO in Atlanta about 8 years ago told me that since my psa was still very low, she didnt need for me to take adt along with 42 sessions of IMRT to “kill” the cancer. I was a rookie at the time and did not question her expertise. Now here I am, dealing with lethal cancer.
I'm not sure the evidence is conclusive yet re benefit of ADT with salvage......and evidence may be clear now, but not 8 years ago. Things change.....or the Doc did blow it?? Hopefully you were told why ADT was not advised.....I mean told re evidence, not some Docs gut feeling!!!
no. The RO Doc just said the adt was not necessary. So at the time my mind said “great”. When I next saw my Urologist, he said hmmmm that is unusual but she is the RO. She blew it for me. Now i pay the price.
I am experimenting with an adaptive dosage of Bicalutamide. I am documenting it in my "Bicalutamide Maneuvers" thread. As an engineer I know that any intermittent control scheme is inferior to a functioning control loop. Think here of your old AC unit controlled by an ON-OFF thermostat and why/how it gave its place to today's DC inverter counterpart. Unfortunately, Lupron's dosing is not adjustable.
I’m sort of on the same path as you. I’ve had two ADT vacations and am currently on my third round of ADT - Lupron only. I had RT after my first vacation. Like you I’m trying to manage this and have a decent quality of life. I view this battle as one of delaying tactics to keep the cancer at bay as long as I can without surrendering my QOL. A balancing act, and some would say a risky act, I realize. But it’s worked well so far. I’ll ride it as long as I can.
I found exercise and diet helps. I weight train, run, and swim. My diet is one of moderation. I still consume animal based protein, including dairy, though I’m consciously adding more plant based protein. I drink beer and cider in moderation. I take a variety of supplements - Vitamin D-3, lycopene, turkey tail mushroom extract, American ginseng, modified citrus pectin, magnesium, and Pomi-T. I don’t really believe they are curative though one can hope. Aside from the money spent what’s the harm?
I don’t know your reasons for avoiding RT but I will mention that I found RT very tolerable. Some diarrhea and urinary issues during the treatment that were managed with increased tamsulosin dosage and Citrucel. No side effects after RT ended.
I know. For that reason, If I were going to refuse either ADT or the radiation it wouldn’t be radiation. Bicalutimide or transdermal estradiol maybe, but not an LHRH agonist or antagonist.
Even intermittent Lupron Orgovyx etc is likely to eventually have far more onerous side effects than radiation. Then it stops working. The radiation could buy him plenty of the QOL he’s seeking and then get on the IADT if necessary.
Admittedly we don’t know his overall heath. FightingHard are you there?
Even at 79 the only way I’d choose IADT as monotherapy is if I had significant comorbidities and/or my testosterone was already low.
Yes he may not suffer, but he well might, and the drug accelerates aging regardless. In addition, being off ‘12 months at a time’ has potential but so is becoming castrate resistant within a short time. Much is not known about his condition.
I also have had PC for 2yrs. Gleason 9, but no mets. My Urologist did not even consider a prostatectomy but opted for ADT + Brachytherapy + EBRT. My PSA has been .008 for 12mths and I am now starting a vacation from ADT. I only had my last Zoladex implant a month ago. In 6mths I will see my Urologist again and then see what is happening. We have a plan for what could be ahead, I just have to wait and see, with regular blood tests.
For the life of me I cannot fathom why one would choose ADT over RT, which could be curative. ADT sucks, at least for me. RT was easy peasy. To each their own.
"The man is 79 years old with a slow growing cancer. I'd probably would do the same. Over treatment is also a serious problem."
Thanks. I really appreciate that at least someone here understands why I'm doing this.
People here are "shoulding" all over me telling me essentially that I'm a stupid idiot for not getting radiation. You people need to think of how unwelcoming you are with your critical comments. .
Happy 80th !He can Do what he chooses . It’s his life ! Everybody thinks that they are experts , yet ,no man has figured out APC ? If someone had ,there would’nt be 16000 of us here asking questions . Even the doctors are not always right . . We are all just doing our best , grasping for life and Hoping for limited suffering along the way . I just stopped a pill test drug Adt after 8 yrs on it . I chopped the juevos off in 2015 …so I will do almost anything not to have pc actively chomping me down for its lunch! I was 53 upon dx ,Doc said , I’ll never see 80 , a yr later I was clear and he said “ you’ve got 30 yrs left”! He saved my life . He’s a pc specialist , but still, I’m happy that he was wrong about a few things now in my favor . He said that adt ( Lupron ) on top of imrt would be the nail in my coffin as far as erections were concerned . I was wearing a foley for a yr and a half . Ever since I got it out every night I ve had night wood like I was a teen again . Of course with no t no balls and shrinkage of my package the old grey mare ain’t what she used to be . Having #4 non op at 53 makes 80 look like a very long shot for me now . It’s has all taken a great toll on me . F anybody that is unwelcoming here .. personally I’d do RT and adt and anything else to knock it back . Maybe he could see 90 that way ! Who knows , maybe not? Either way , it’s his choice . I don’t care if people think I’m an idiot here . Many do I’m sure . People are too critical and not empathetic enough . Imho .
Thanks dagreer! I’m trying to make others laugh . I don’t live in Alaska ,although I love that state . I’m in Az. I’m not 137 either it’s all just for fun . I deleted my real info after a member insulted my wife on chat . This is my 4 th name change in 6 yrs here . Take a minute to watch “ dr strangelove “ hilarious . Take care
Often others forget they do not know you or your full medical history when replying. There is no one size fits all with cancer. The downside to posting on any forum is, people are going to give their OPINION from their own personal experiences. Everyone has the right to their choice of treatment or not to do a treatment. Heck, some are using dog wormer!!! Remember, when posting here people naturally assume you are looking for feed back so you will get it. They mean well, some are not very considerate when expressing themselves and do come off as critical. You sound like you have made an informed decision for your circumstances and that is all that matters. My husband still deals with side effects from his 44 radiation treatments seven years ago! Age does matter.
Thanks so much. I think people need to be more sensitive about second-guessing treatment decisions. I do think there is a tendency to over-treat, especially to not consider age, life expectancy, co-morbidities, etc. I met a guy in a support group who is talking about doing a RP at age 86. Not for me.
Speaking of second-guessing treatment decisions. The most ridiculous thing I saw here was a woman sharing about how her husband had passed away and then someone asking her why he didn't go for the "cure" instead doing everything they did. Wow. How insensitive can you get? How is that helpful? Unless you happen to own a time machine, it's kind of hard to change it now.
Gonna be 80? Holy Shit that's old.....If I were you I'd do what is right for you, pick out of a hat. How's that for an answer. Regards and keep posting!!!
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