I have a question for all you warriors. I was diagnosed with the Beast in 2002 - 4 + 4 - had rp and rt in 2003. Psa has stayed low for 12 years and finally started rising above 4.0. My MO recommended Cassodex only in 2014 and that kept psa below 2.0 for 3 years - bone mets showed up on scans. In 2018, I had my first Lupron shot and psa dropped to .25 and slowly started rising. In 2019, psa was .85 so I added Cassodex to my Lupron and psa stayed around .5 before beginning to move again - currently 1.2.
2 questions:
1. When do I look at the next bullet - Zytiga or Xtandi.
2. Are the side effects worse than just Lupron?? I am very active in spite of the fatigue.
Your choices are docetaxel, Zytiga, Xtandi, and Provenge. You can get you have any pain or discomfort, you can get Xofigo. Xofigo+Provenge is particularly beneficial.
My m o says let's just keep watching it. Stay on cassadex and lupron for now. Have friends that are on lupron and Xtandi and that seems to work pretty well. All of them had a PSA well over two before they ever started. Thoughts
I just got my PSA results back 10 minutes ago and my PSA jumped from one two to one five. Scans on Friday. Does Xofigo just help with bone met pain or does it help fight the cancer
Consider combinational treatments, for example, starting with ADT + Zytiga, then add Docetaxel early. Choosing Xtandi or Zytiga first is a choice between your doc, as either one can be added later to ADT - if a change is needed.
There's Cabazitaxel (Jevtana) chemotherapy after Taxotere (Docetaxel), and as mention the potent combo of Radium-223 (Xofigo)+Sipuleucel-T (Provenge).
Please be careful with Google searches, as they're lagging and have obsolete PCa data results. There's been advancements in administering these treatments - with diagnosis: hormone sensitive or castrate resistance Prostate Cancer.
These Cancer Treatment Modalities are a great discussion points with your doc...
I am currently on lupron with 50 mg of cassadex. I am trying to figure out if I should switch to Xtdandi or zatiga in addition to lupron and my question to you is are there more side effects with Xtdandi or zatiga in addition to lupron The side effects of lupron of fatigue is not great but I can deal with them I was curious if Xtdandi or zatiga makes it even worse.
I'm on Zytiga, for me, it didn't add any additional side effects with Lupron. The required added Prednisone was a challenge, needed to reduce from 10mg to 5mg daily.
My hot flashes were severe, but eventually, my body/mind adapted, so all good.
Hey, we're all biological unique, my advice is to challenge your doc!
My treatments are working, but, don't know if Zytiga makes a difference over my quarterly Lupron/Zometa injections. PSA is holding at <0.02, which is great since was diagnosed with extensive mestatisis from pelvic to spine.
So, "challenge my Doc", meant to keep pressing with treatment options, like don't settle just with Standard of Care...
Lupron (Leuprorelin), is what you read here regarding ADT:
"Androgen deprivation therapy (ADT), also called androgen suppression therapy, is an antihormone therapy whose main use is in treating prostate cancer. Prostate cancer cells usually require androgen hormones, such as testosterone, to grow."
-- Wikipedia
Zometa is bone treatment:
"Zometa (zoledronic acid) (sometimes called zoledronate) is a bisphosphonate medicine that alters bone formation and breakdown in the body. This can slow bone loss and may help prevent bone fractures."
A typical Standard of Care Prostate Cancer treatment protocol is to administer ADT with Zometa quarterly injections.
So, to be coy, ADT is the food and Bone (Zometa treatment) is the prime Real Estate for Prostate Cancer cells..
Dam TCE! 12 years , then this . This is our our mutual friends nature . Your story Slaps a relatively newbie like me with reality . I wish you the best results and a healthy recovery . Good luck 👍
With confirmed bone mets you might also want to ask your doctor about the feasibility of one of the bone protective agents, either Zometa (zoledronic acid) or Xgeva (denosumab).
My own anecdotal experience with adding Xtandi was a continued increase in general background fatigue, and a slow reduction in the amount of time I could work hard, and in absolute peak strength levels. It came on gradually, and I adapted gradually. Some of the heaviest, most temperature sensitive, most risky household tasks were eventually switched over to hired or younger extended family help. I also had to find ways to "work smarter, not harder", and to be more willing to "ask for help" and to "pace myself" and to "plan ahead". This process involved some different conversations about roles and responsibilities between me and my loving spouse/caregiver. Personally, I experienced some emotional side effects as I felt some sadness and grief about the slow losses of the easy ability to do things that once fit the picture of who I was in terms of my "roles and responsibilities and capabilities" in life. Dealing with the mental/emotional aspects seemed on a par with dealing with the actual physical side effects, themselves.
Other side effects were mostly like an extension of what I was already feeling on Lupron.
I have not been on Zytiga. Others here may add their anecdotal experiences.
Collective data from prior Studies leading up to the original Approvals of these drugs can also be found in the Full Prescribing Information documents or their summaries.
Still on Xtandi. Yes, it "worked". If you click on my user name, you can read some summary details on my Profile page. Individual results & biology may vary, of course.
Morning Sir, have been on Lupron for about five years then added Xtandi about one year ago and now it is not working. Same side effects as you. Terrible. No quality of life.
Surgery next month then immunotherapy. But you were right on about side effects of Xtandi
It appears you have had Pca for 18 years after diagnosis, and now have Pca in bones where it likes to go, and maybe elsewhere in soft tissues.
I was diagnosed Gleason 9, Psa 6, inoperable, age 62 in late 2009.
Provenge is not known to give a high success rate. It may work for a few months only if the altered white cells in your body do not replace themselves with continued ability to keep fighting cancer. I knew a man who a few years ago said he had near remission with Provenge after having that treatment 9 years before, ie, just after if was released to become available for patients, and back then it was usd $90,000. Lots more now I guess/
Xtandi OR Zytiga can be used, but not together, and and here in Australia they don't allow docs to give these one after the other.
Extra time gained for Psa supression may be a year for these hormone manipulating drugs added to ADT.
Zofigo, or Radium 223 is possible for bone mets only. One other alternative is Lu177 for which you'd need a PsMa Ga68 PET + CT scan before you start with Psa at above 2.0 You would not have long to wait with Psa at 1.2 and rising.
I had chemo after ADT + Zytiga failed in 2018. The chemo failed. So I had 4 shots of Lu177 between Nov 2018 and May 2019, and then had Xtandi added on 3rd Lu177 shot. Psa went from 25 at Lu177 start to 0.32 a year later but now Psa in 11. I had my 7th PsMa scan yesterday and in a week I'll know what my cancer status is and maybe I get more Lu177. Maybe I get another carefree year of not having too much to worry about.
I talk to my onco next week, to see what is happening and not happening, and what options I have. I've had ADT since 2010, and no fatigue, and few side effects except extermination of any normal sexual capability which never mattered because I have not had a partner for about 20 years, except of course my defacto partner, ie, my bicycle, whose only demand to ask me to ride it 200km a week at good speed.
It is good if any man does to stay fit and healthy while on ADT. I have proved often that my health and fitness levels are just as good and often better without testosterone than men with a "full bottle" of testosterone in the normal middle of the normal range.
While cycling around my City Canberra for last 5 years, no man over 65 has ever overtaken me. Young men go past at 30kph while I am doing 25kph, but I am twice their age at 72.
I am continent, but RT makes me not delay when I get an urge to dump solids.
BMI = 22.5, waist 92cm, resting HR 48, and I have no co-morbidities such as high BP or diabetes etc. I have no pain while on bike, but do have some arthritis from living a long life working hard in building trades from 19 to 46.
Here in Oz, an announcement on radio today was made for Proton radiation to become available in Adelaide in about 4 years.
Claims were made that unlike ordinary X-ray beam RT, the proton beams go into body and only affect the cancer and they don't effect anything else. But I think that was BS spoken by a typical ignorant journalist and maybe only benefit of proton beams would be narrow beams which don't flare out like most X-ray beams. When molecules of hydrogen have their electrons removed, there is just a proton left, and that is many times more massive than any electron, so protons would seem to be like a big cannon ball able to smash cancer molecules to bits more easily than tiny little bullets we know as electrons. But those big proton balls would surely affect healthy tissue cells would they not?
Sometimes such radiation can be used on bone mets if there are only a few of them. But I had countless bone mets, so I needed systemic treatment, and targeted Lu177 was the best option I had, and it was available in Sydney only 300km away from where I live.
I have had no side effects from Zytiga other than some fatigue. I was started on it as soon as my PSA went above 1 after 2 years on Lupron. I still get the Lupron shot (every 3 months) and PSA has remained undetectable (<0.3). Dr says Zytiga (abiratorone acetate generically) is good for around a year. I’ve been on it 8 months. Metastatic diagnosed fall of 2017.
Clarifying much of the excellent information and suggestions above for my view.
1. Time to stop Casidex altogether. After it stops working it turns against you and can stimulate rather than block the AR.
2. A bone strengthening regimen is a really good idea going forward. Xgeva or Zometa.
3. Provenge combined with Xofigo if you can get it paid for. The dying cells from the Xofigo radiation may be enhancing the immune response.
4. Your next step is choosing which systemic treatment to add to ADT: chemo with doxetaxel (saving cabazitaxel for later if needed); Zytiga with prednisone; or Xanti? T_A has an excellent summary on his prostate cancer.news blog in December 2019 on “Optimal chemohormonal sequencing. .”
5. I would consider favoring Apalutamide or even darolutamide in place of Xanti if you can get approval for it. Better SE profile and possibly better efficacy. Being intolerant while on Xanti would probably justify the switch.
Congratulations on your long run with this. Stay out front!
FYI- I recently re-started Zytiga after 2 years without it. It was added to the Lupron I have been on for 8 years now. I THINK it has made more lethargic than I have been over the past 8 years including the previous periods when I had been taking it.
Covid is horror for the planet . It’s worse in the third world I believe.
I see you've been with us for awhile.... can you tell us your age? location? location of treatment center? Doctor's name(s)? Thank you!!! As you know all information is voluntary but it helps us help you and helps us too. 18 years, way to go..... keep on keeping on.
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