Hi All,
Had pros. cancer in 2014 which was knocked out with guided radiation. Now, 9 years later my PSA went from .4 to .9 in 12 months. PSMA Scan shows a 5mm spot on a small pelvic node. No MRI or CT would have found this!
Dr's. starting me on Org., 28 days of Radiation and Abi. The whole hormone therapy part has me spooked. I almost feel like they are killing an ant with a sledge hammer. Please relate you experience with this treatment. I would like to know just how nasty it's going to be...
While I have not tried it yet it will be my next hormone therapy after I go off my current medication holiday. My MO tells me it will have less SEs than any such meds I’ve used previously (Lupron, degaralix, firmagon). Plus it’s oral so no painful injections.
"killing an ant with a sledge hammer" It's not an ant, and you need the sledgehammer. Yes, we are lucky to have PSMA PET scans that can detect what conventional imaging could not. But what you are seeing with it is just the tip of the iceberg. Even the best PET scan can only see metastases bigger than 5 mm and has only 40% sensitivity. Once cancer has metastasized, there are thousands if not millions of seeds in the area, all waiting their turn to spread and grow even more. Think of it as the mycelium of a fungus instead of seeds of a plant to get a better picture. You are only seeing the mushroom, but you have to kill off the mycelium.
Thanks Tall, that puts it in a perspective (unfortunately) that I had not heard. With a clean prostate for nine years and counting, of course it was very disappointing to see this in a node now. I have no idea why this little bugger showed up, but I am grateful I was directed to the psma test so I can get on this early. Now I understand why my Doc wants to hit the node and broad surrounding areas with the radiation to try to kill off other cells. Along with the 2 drugs. If you have any other input as to how this seems to go, please enlighten me. Thanks
georgerose9909 wrote -- " ... Had pros. cancer in 2014 which was knocked out with guided radiation ...... and ...... With a clean prostate for nine years ... "
Care to convey what your diagnosis was 9 years ago? Might be considered as simply *water under the bridge* but it is often helpful for those reading a post to understand where it all began. e.g. - I've been dealing with my GL 10 diagnosis and treatment since 2015.
TIA + good luck and keep posting
They expected the radiation to cure me. I did have a needle biopsy prior to diagnonis and that put me in the hospital for 5 days + 10 days of home IV antibiotics. The needle released some kind of sepsus that nearly killed me before I even started dealing with the cancer. Now I'm thinking that that's what released it into my system which came back to haunt me now, 9 years later.. My prostate is 100% clear of any disease.
Sounds like you had a TRUS BIOPSY that is known to cause serious infections.
That is very frustrating after so long. The best theory I have seen is called "seed and soil." According to the theory, cancer cells escape the original organ by undergoing a genomic transformation called EMT (Epithelial-to-Mesenchymal Transition). This enables them to remain viable as they travel (via lymph, blood, or nerves) and take root in other tissues. They then spend time altering their host tissues (primarily lymph nodes and bone for prostate cancer), preparing the "soil," so that it is conducive to tumor development. It can take years in the case of PCa to prepare the soil. Large enough tumors eventually start to leak PSA into the serum and become detectable on imaging.
Patient had radiation therapy many years ago; not surgery.
Side effects from the proposed hormone treatment vary a lot. Consensus is to exercise a lot to minimize them.
Thanks- corrected.
I've only had Lupron for 4.5 years. No other standard treatment. Very tolerable, but no libido and less energy. I worry about bone and muscle issues the longer I use it.
5/23
Don't fret............ everything is nasty............But you will learn to live with it..........we all do..........
Good Luck, Good Health and Good Humor.
j-o-h-n Monday 05/29/2023 10:25 PM DST
We all react differently to ADT and there are ways to help lessen the side effects. Myself, Orgovyx was ineffective and at 5 weeks my testosterone was still above 200. Switched to 1 month of Firmagon and then Lupron (6 month shot) for 1 year, my last shot (6 month) was Erleada and plan is once more before stopping - this along with abiraterone.
So a bit over 1 year and my only real side effect has been mild "hot flashes" and a touch of fatigue or tiredness that is easily overcome. Exercise and staying active definitely help - I'm out walking with my dog 2-3 miles in the morning and active all day with visits to the gym for weight training. Adjusted diet a bit and try to maintain a good sleep schedule. All help with the side effects.
Importantly, stay in touch with you doctors and let them know if something is uncomfortable or upsets your normal routine. There are some things they can prescribe to help. If anything is tough, it is the Prednisone - make sure you take it with food and realize it is necessary but can have nasty side effects - upset stomach, fluid retention, bone density loss to name a few.
It was not as bad as I had been told by some and I believe you have control over just how much it can impact you in some ways.
The biggest downside for me was my loss of a sex drive. Then again, once it's lost, you don't miss it as much as you might think. For me: weight gain, "manboobs", loss of muscle mass ....were challenging changes to deal with, but after 11 years, I have mostly come to terms with them and feel very fortunate to still be around, watching my 3 boys grow up to be young men (now: 16,19 and 20), and spending time with my wife, other family and friends. And, my recent introduction to and "addiction" to Pickleball has improved both my physical and mental well being. You can look at the glass as being half empty or half full- I am disappointed I have this disease and have to deal with the treatments, but glad I am still around and enjoying life. Good luck!!!
Hi
Glad to hear you are surviving the ordeal! If I may ask, what age were you diagnosed and how bad was the cancer and subsequent spread? I'm 67 and this is the first reocurrence in a 5mm node next to my pelvis. The doc's said 2 years should do it after 28 days of rad. Did the worse side effects (no sex drive, "man boobs" etc) appear during that time (2 yrs) or did those take more years to develope? Thanks!
Difficult for me to remember that far back but I believe the loss of sex drive occurred quickly along with the manboobs. The weight gain was almost immediate. From age 17 to age 54 I went from 135lbs to 150lbs- abut a pound increase every 2 yrs. When treatment started, I added 15 lbs in one month and 20 overall. In the kast 6 months I have lost about 5lbs (Pickleball and less ravenous eating at night helped that happen.)
I was DX at age 54 with about 4-5 mets. I had 3 "vacations" from treatment during the first 5 years. I had my prostate and 34 lymph nodes removed a few months after DX, ("experimental) although the latest info seems to suggest this was not helpful nor recommended. I have been on both Lupron and Zytiga for most of my 11 years. My largest tumor, located in my left acetabulum (hip) was radiated in 2014 (2 yrs after DX) and again last June when after my PSA began to rise (to .20) and my MO felt the PSMA scan indicated that tumor was the culprit. PSA has started to rise again (from <.05, to .05, to .06 one month later. When PSA approaches .20, I will have another PSMA scan and decide which treatment to try next.
Truth be told, I would be very happy to live the way I am living for many years to come. Everything is relative. Stay healthy!
ADT + Abi + Docetaxel for metastatic prostate cancer?
Does this say abi and Lupron is as good as it gets. 
OK to switch from 750mg abi without food to 250mg with food?
Need inputs on Abi side-effects for bed-ridden patient
