Recently diagnosed with PC with a PSA of 1800. It has metastasized to my bones with lots of mets in my back. Just finished radiation to the lower spine. Now on Lupron and Casodex, started treatment early August, and my PSA has gone down to 241. Still seems high, but in the right direction.
The doc gave me a choice of chemo or the drugs such as Erleada, Xtandi or Zytiga. (I have read each drug results and am leaning towards Erleada?).
His advice was to go to the drugs, the nurses advice was to go to chemo, saying there are better results with early chemo.
Trying to make the best decision. I appreciate any advice, thanks.
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The existing studies show similar results whether you have chemo now or these drugs instead. So it depends on your individual situation. If you still go to work a chemo may stop you to continue with that while the treatment lasts. On the other hand you have to take e.g. Erleada for a long time and accept the side effects of this treatment during that time. When Erleada does not work any more, you will have to have a chemo. So the question is chemo followed by Erleada or Erleada followed by chemo.
You hit the cancer hard if you have a chemo and start with Erleada after you recovered from chemo. Usually doctors will wait with Erleada after a Chemo therapy until Lupron does not work anymore.
For guys that have extensive mets, chemo is a good choice. It also hits all the cancer, not just the hormone sensitive. It's over fairly quickly, then you can go on to a second-line ADT agent that is generally a longer term treatment. That is the route I took.
My very biased opinion (I had early chemo) is to go with the chemo first. It's attacks the cancer differently than a hormonal agent. If chemo works for you now, then it's something that can be tried again after a 2nd line hormonal agent fails. The chemo is also easier to tolerate when you're relatively young and healthy.
In my personal case, my MO added Abiraterone (generic Zytiga) more or less immediately after chemotherapy, without waiting for any signs of progression. This is what finally knocked my PSA down to undetectable levels, and side effects have been largely a non-issue (though hot flashes have been very annoying at times). I'm back at work and running/hiking/walking 30 miles a week on average. It's also worth mentioning that I'm only 51, which puts me at the kiddie table in the prostate cancer forums.
In general, if cost and side effects aren't an issue for you, my opinion is to get as much treatment as you can up front. This is based on my theory that if you have lower amounts of less active disease, then there's a lower rate of cancer cell division, which means a lower opportunity for it to make an error while copying DNA and randomly find a way to evade treatment.
I think there is a bigger fear factor with chemo that many people have a difficult time overcoming. I had this myself after watching my father die from cancer. The chemotherapy for prostate cancer is well tolerated in most cases and it is on the easier end of the chemotherapy spectrum. Once I found that out, it was easier to make the decision.
If I had to do it over, I would do chemotherapy again.
Hi, IMHO, do the chemos first. I was hit as the CHAARTED study results came out in 01/2015. Started Lupron/Casodex and then 2 weeks later Taxotere. After 5 sessions PSA still in teens (from 840), MedOnc told me "I'll give you more chemos until you tell me to stop, or the numbers plateau)" I had nine more on top of the standard six chemo protocol. Still worked 6 days/week and completed six marathons that year.
Stopped ADT after 30 months, did an 18 month 'holiday" and got back on in 12/18 as PSA got to 10.2. Getting an Axumin scans in a couple weeks as PSA hasn't dropped below 3.8 and was at 6.7 last month.
So, I want another round of chemo (either Taxotere or Cabazitaxel) to
re "fumigate" my body, rather than a spot treatment.
uptodate.com/contents/treat...
My best to you on your Journey (I now say Camino, as I did the last 112km of the Camino in Spain for PCa awareness month)
Hi, just had a blood draw pre chemo (doing a 2nd course, did 3rd of 6) and I still have a bit of anemia and low hemoglobin. Liver panel was pretty normal
those look good. many of mine are near the low end of normal except wbc which is always below normal. This month it is 3.87 and I'm not on any Lupron right now. I think you are doing well. what is a chemo round and 3 of 6? If I do chemo for the first time, is that my first round? and then they have a certain amount of injections furing the 4.5 month period?
Can or do they allow you to supplement with methyl folate or chelated iron pills to keep the anemia levels at bay?
Hi, I had a first round of chemos of 15 Taxoteres in 2015 (MO went outside the box and gave me 9 over the CHAARTED trial of 6 sessions). Despite those extra chemos, I still had 2 x one cm pelvic lymph nodes that lit up in the Axumin scan last Fall.
Yes, that's a round of chemos, one every three weeks. MO agreed to do a rechallenge with Taxotere to shrink those hot spots and maybe resensitize the PCa to Abiraterone and Xtandi.
I take Vit B12 daily , and Nitric Oxide prior to hiking
I think they will benefit you equally. However, for strategic reasons, I think you should consider chemo first. Chemo is usually given as 6 infusions with 3 weeks between, so in 15 weeks, you will be able to move onto and benefit from Erleada. If you start with Erleada, it will probably be more than 3 years before it begins to fail and you will move onto chemo. So you get to try both drugs sooner if you start with chemo.
I was similar situation last Nov, Stage 4, Gleason 9 and PSA 1386 and Mets to every bone in my skeleton and got into the Marrow on both Femurs.
They did combined ADT (Diphereline) and 6 rounds of Chemo (docetaxel), got my PSA down to 0.38, Lymph node 1.6cm to 0.6cm and good reduction in all my Mets.
1st Nov is next appointment with MO saw him in Aug, keeping my fingers crossed
They started me on Zytiga start of Nov, by Dec they could see my PSA climbing and by Jan it was 360. I'm back on Chemo, not happy about that but what can you do. 🙁
What was your Gleason score when diagnosed ? That number can make a difference in your treatment. Also don't overlook Radium 223 (Xofigo) which can be very effective against bone mets.. You may have to visit with a RO (radiation oncologist) to get the facts about this treatment..
Combining two therapies at once can be much more effective than just doing one.....
This is an interesting perspective Magnus. Most of the guys on this site say that you get better overall survival from adding the chemo or 2nd line treatments earlier. Why do you think it's better to stay on the thing thats working before changing to 2nd line drugs or chemo? Are there any study results that support this idea? I have to decide what I want to do. I just posted a similar post/question today. You can read it if you want.
To stop Lupron and casodex while they are working does not insure that they will work later. As a patient you might as all get all you can out of them.
You have to look at your life and the quality of life you want. My husband started Lupron two years ago. NO results past 6 months. Then used xtandi. Still no results. Started Chemo last July to January. Quit because he had no energy and didn't feel strong enough to continue. Started to feel a little better but started going downhill in late spring. At some point last spring they started Zytiga. He stopped all treatment this summer as he was too weak to handle anything else. He passed away September 21. HIs quality of life decreased each time he added a new treatment. The last year he has pretty much stayed home and watch Utube videos. Before starting Lupron, he was building a dune buggy, target practicing, hunting, and was social. Once he started lupron, that all decreased to nothing. My personal opinion is that he would have been better off not treating the cancer and living his life to the fullest for the time he had left. He had Proton radiation 20 years ago,and it had gone away until a couple of years ago. He still had some negative results from the Protons but still had 20 more years. He was 82 when he died. The cancer had not metastacized when he started Lupron, but had by six months later.
You just need to look at your age, how important it is to live longer, and what quality of life you want as well as how well you respond to treatment. If it starts to affect your quality of life, you need to re-evaluate your circumstances and treatments.
I'm 56 and trying to keep up my shooting sport (Archery). I had to quit Euro Field champs after one day this Aug, I just couldn't get around the hills. I still shoot on my range and can manage a 1 day competition if the terrain is not to extreme. It's mostly pain and weakness in my legs but I did have to drop 10# draw weight to keep shooting. It gives me something to look forward to, although I'm not a high level anymore (4 times World-Euro champ), I can still be in awe of the arrow flight.
Jobeth, I am sorry to read of your husband's death. My condolences. I also wanted to second your thoughts about quality of life. While my husband did not get 20 years, he did get 17 years post-diagnosis. The last 18 months probably would have been better had he not tried treatment after treatment. Your description was spot on: a once active person became very sedentary. He would say, "Maybe we should go do X," but when push came to shove, he just did not want to (and sometimes could not). In our culture, it is very difficult to say "No" to additional treatment, but I do think we need to have conversations around that.
I agree but whenever I try to have these conversations, all I get in response is: hit it hard up front, or here are the results of the Stampede trial. There arent any good studies that show how the quality of life and the longevity were as good for the people who did not add the drugs or the chemo.
Perhaps looking at some of the "Watchful Waiting" (or whatever that practice is called now -- maybe "Active surveillance"?) studies could provide a useful point of contrast?
You are quite right that once you head down the path of taking the drugs you won't know what "might have been" had you not. Hopefully you will find an oncologist who is willing to have the conversation you would like to have about just stopping for a while.
Though in the last three or so years my husband opted to try whatever was available, up to that point he was quite reluctant to try the "hit it hard" approach. AND, he had a great oncologist who was very willing to discuss options -- over and over again! The oncologist was also quite willing to say, "Let's try it and see what happens" when Patrick would suggest just stopping something that was giving him trouble. Not all medical professionals are of that ilk. So if you find one, treasure her/him!
In the end, it is your body and your life, not the doc's. There are individual tolerances for risk, individual determinations of what constitutes quality of life and so forth. You just make the best decision you can with the information at hand at the time.
And, yes, the decisions you make at 50 will quite reasonably be different from the ones someone who is 70 will make.
Sorry not to have anything more specific to offer -- other than to hope that you have someone to talk through the options with.
thanks, good points. I talk it over with you guys on here and with a couple different doctors, who never seem to agree. That's the thing which proves its a guessing game a lot of the time is that well know doctors in the industry for many decades dont even agree what to do. One is "save your bullets" and the other is hit it hard so to speak. Alot of it comes down to quality of life. Studies often say qofL doesnt vary much between 2d line drugs and just lupron but then you hear guys on here that have huge side effects sometimes. Thus, it's individual dependent.
those are good points and it's hard to get many people on this site to look at it this way. It's impossible to compare what happened on the drugs and compare it to what would have happened off of the drugs because you never saw what would have happened off of the drugs. I have been on lupron for 4.5 years and I dont like lupron but I have no way to know what my cancer would have grown to if I had not used the lupron. Thats why I am so unclear about all this decisions. Current studies show increased lifespan using more treatments but those seem to be in men who have only a few years remaining to live, so it's hard for me to translate that to someone like me, who is in his 50s and a little stronger than someone in their 70s or 80s. My quality of life on lupron is kind of like living like a zombie but I do have a PSA doubling rate of 3 weeks so I presume that my psa would be like 1000 if I had not started lupron. it's a tough topic. I am happy to hear that your husband had great success with the proton. I had zero success with my treatment at 50 years old.
You have likely heard that everyone is different. No truer words were ever spoken. Every treatment has side effects.
I can only give my anecdotal story. Stage 4 Dx, PSA 1300+, mets throughout my bones. On Lupron and my own Alkaline Therapy for 14mos, PSA between 1 and 2 for last few months. I wasn't given the choice. In my case this is working for a while. Your mileage may vary.
Thoroughly research all your questions till the advice offered seems like the best choice.
Just before DX when I got first 1200+ PSA it seemed clear to me I had PCa but system took much more time with testing and DX.I lost 55# in 2 mos and experience extreme pain over 7 mos.
I needed to start some type of treatment or go nuts.
Web search turned up something called Alkaline Therapy. Lots of variations and anecdotal stories.
I went for it.
I started 12 days on followed by 10 days off.
AT Dose: 1 cup water, 1tsp baking soda, 1tsp pure maple syrup.
AT Schedule: One cup BEFORE any food in morning. One cup AFTER last food at night.
My test treatment started just after PSA 1303 and rising a point a day. After 12 days on AT my PSA dropped to 392.
Wow I'm thinking this is working great.
I finally started SOC with Bicalutimide and Lupron in Jun 2018. PSA continue to fall over a few months to 1.8
AT recently reduced to 10 days on each month. No clue if it is doing anything.
I could no longer test the AT alone but continued until Jan 2021. Dropping AT for a couple months as a test now.
My MO and UO just snicker and roll their eyes but I keep them appraised of all therapies at all times.
MY story. Your mileage may vary. I make NO suggestion that AT replaces any treatment. Only added with MO's knowledge.
They gave me the choice as well, I did not have radiation, stage 4 with Mets in lymph node,spine and ribs. I chose chemo since the doctor recommended it, along with adt treatment. When I finished chemo I started on Xtandi, that was 34 months ago. So far PSA 0.05. You have to chose what you trust. The guys here are very well read but it ends up your decision. Good luck with the monster. 🙏🙏🙏
I'm getting number 5 of 6 total infusions next week, I get tired after the third day and my taste buds lights go out for a few days. But rebound quickly and feel great that I carpet bombed the hidden cancer creeps!
when you had your chemo success, was that the standard 4.5 months with docetaxel? I'm thinking about doing it now since I didnt do it four years ago when they offered. I still have low volume cancer though.
No George, it was not. It was a six month clinical trial. I started it six weeks after Mets were confirmed. Nothing standard about the trial.
Each course of chemotherapy lasts for 8 weeks. Patients were treated in weeks 1, 3, and 5 with doxorubicin 20 mg/m2 as a 24-hour intravenous infusion on the first day of every week in combination with ketoconazole 400 mg orally 3 times a day daily for 7 days.
In weeks 2, 4, and 6, treatment consisted of paclitaxel 100 mg/m2 intravenously on the first day of every week in combination with estramustine 280 mg orally 3 times a day for 7 days. 30 mg of Prednisone everyday through the three courses of chemotherapy. Plus Lupron/Eligard injections
I was 55 and in very good shape in 2004. I was one of nine with a complete response. There are some on this site who had the same medication, same doctor with different results. In my mine the different was a lesser scope of disease and hitting the cancer hard with very early chemo.
If the success rate was so good then what did they do with that type of treatment after the study was done? Was it ever incorporated into practices? Is it in anyway, similar to someone getting taxotare/docetaxel?
George, I am not a science guy. However both attack the cytoskeleton of the cell, weakening the cell’s structure and preventing it from successfully replicating. There have been many studies with varying combinations. I believe it was 2004 or so that Taxotere showed the best results. However, it was debatable ten years later.
There are still trials going on to kill cancer with a combination of these two taxanes. Even weekly vs every three weeks..... perhaps a discussion with your MO is best.
“My” researcher continued with this treatment plan until he died a couple of years ago. As explained to me, he was allowed to continue his research as he was recognized as a world class researcher.
He told me once that breast cancer and prostate concern are closely related. Dismayed at the amount of dollars pouring in for research for breast and not prostate cancers.
I bring this up because I have a cousin with metastatic breast cancer. Her treatment? Pretty much what I had. Let that sink in. Taxol and the Red Devil combination with the orals also.
I do know that early is better than later with either and in combination with ADT. My guy showed this before some of the well known trials bantered about. Tall Allen gave you some excellent advice a year ago.
Thanks GD, there are so many interesting stories from you and some of the other guys. It is kind of sad that all the treatments and SoC seem so disjointed. It does seem that things are not progressing as fast as we would like, other than with some meds. I wish the immunology and precision medicine sector would get more attention.
OK, it's late. take care man. talk another day. Be well.
Had same situation. Did cnemo first 2 yrs ago along with xgiva shots for bone can. Just started zytiga this mo. Chemo will bring psa down faster. I whould do chemo first if u are strong enough for side effects.
I vote chemo. My MO recommended early taxotere to me (or maybe I suggested it based on studies and she concurred). It, along with Lupron, worked great. I'm on Lupron only now and still have these other drugs in my quiver. Chemo while you're still strong enough to handle it well.
Have you thought about adding the 2nd line drugs now, based on the studies coming out that people live longer when they add the 2nd line drugs earlier? I have been using lupron only for 4.5 years?
My MO bailed on me, so I have a new one at MD Anderson. Scheduled to have my first meeting with him next month. So I'll discuss with him where to go from here, in light of new developments since I was diagnosed ~3.5 yrs ago. But since I have been undetectable for about 3 yrs (I'm also on Lupron only), I imagine he will say "keep doing what you're doing." We'll see.
I was fairly ignorant about it at the time, having not yet discovered this discussion group. I think a cold cap and icing down hands and feet during infusions probably could have saved me from losing some hair and nails, and might have prevented neuropathy of my feet. Uncomfortable, yes, but probably worth it. My best advice is hydrate, hydrate, hydrate! Even water tasted so bad to me after treatments that I didn't drink enough. And that made my side effects worse. So hold your nose and drink up.
do you do the chemo at your home or at the doctor's office? Wondering how you iced down your hands and feet if you were in the office? good info you provided, thanks
In an infusion center at a hospital. I DIDN'T do these things, because I didn't know about them then. Would have had to bring some ice in a small ice chest, I imagine.
I started with chemo and ADT just over a year ago. Started abiraterone 6 months ago. Abiraterone and ADT are now failing. Should I have started with Abi right away? Hard to say. Quality of life would have been better.
However I am now looking at Lu177 PSMA. Guess what, a prerequisite for Lu177 is chemo. I can now start Lu177 right away and without having just been beat up by chemo. Maybe early chemo was the right decision!
thats unusual to have the adt and abiraterone fail that quickly. Is that because your PSA and mets were at a high level/volume when you started on the ADT?
I had the same choice because Pathology found a small percentage of my PCa to be neuroendocrine. My MO offered chemo or LupronZytiga/prednisone. I work full-time and I am very busy and so I chose the hormone route. After my reading here and elsewhere I became convinced that I would have to stop working if I went with the chemo, and I enjoy my work. So far my hormones are working perfectly (undetectable PSA), and chemo can wait.
Chemo 8 cycles + lupron and xgeva. 25 months xtandi + lupron + xgeva. Psa <0.1 Last scans show extensive bone mets stable and no new mets. So my biased opinion is of course chemo first. Good luck.
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Looking for input on Chemo & Oligometastatic 
When to go back on ADT
Chemo with docetaxel?
What is PSA NADIR for ADT treatment?
Really wanting a break from the ADT drugs
