Hi I am looking for information to ma... - Advanced Prostate...

Advanced Prostate Cancer

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Hi I am looking for information to make a decision if i do chemo or not ,on hormone therapy now PSA 680 now 20

Wazza52 profile image

Metastasis to my spine ,rib ,lungs ,right acl and pelvis on hormone therapy now Gleason 9 and stage 4, feeling good and healthy tho is it worth getting chemo how bad is it ,thanks

43 Replies

Currently, the best treatment combination for the newly diagnosed with stage 4 has been shown in PEACE 1 trial. For the first time, median overvall survival is over 5 years for stage 4.

The treatment plan for PEACE 1 is ADT plus Docetaxel plus Abiraterone. Don't know how long it's been since you were diagnosed, but it would be something to discuss.

I've done Docetaxel and found it quite tolerable as most do. You feel crappy mainly for the first week and the next 2 are fairly normal. It's well worth doing, I am coming up on 5 years next month. Back when I was diagnosed, only early chemotherapy was approved so I did that along with ADT. Early Docetaxel chemotherapy plus ADT had shown a median survival of 4.4 years.

Wishing you the best.

Wazza52 profile image
Wazza52 in reply to gregg57

Hi Gregg ,I was diagnosed maybe 2 and a half to 3 months ago I was getting hardcore pain in my left rib mainly went to chiro a few times didn't help with ribs and back pain had a x-ray found in lungs and spine then after 7 days in hospital to get pain relief under control and few scans and prostate biopsy found prostate as primary then started hormone therapy helped with pain straight away and now just trying to work out what action I should take ,I've always said I'd never do chemo but with a misses and two daughters it's a bit hard to say no to chemo ,cheers for your Rey

Pleroma profile image
Pleroma in reply to Wazza52

I second Gregg57's comments.

I did chemo soon after diagnosis. It is typically 6 sessions, 3 weeks apart.

The first session is really crappy. Get through that, and the remaining sessions are a breeze. Taking a Neulasta shot the next day to help with boosting white blood cell count is highly recommended.

Modern methods of dispensing chemo is a vast improvement over say 20-30 years ago.

Three years after my chemo, I did it all over again. No problems.

You get a bit of neuropathy in the finger tips and toes - which can be somewhat mitigated by packing those two areas with ice during chemo.

All in all, a good experience.

gregg57 profile image
gregg57 in reply to Pleroma

I don't know if you experienced this, but I found there was a psychological benefit to doing chemotherapy that I didn't really notice until after I stopped. During chemotherapy, I had a focus, goals of getting through each cycle and a feeling that I was taking the fight to the cancer. Having some suffering actually enhanced that for me, knowing the cancer was suffering more. I'm certainly not saying it was easy, it just helped me psychologically more than I realized. I was definitely happy to be done with it, but realized I missed that aspect of it.

Pleroma profile image
Pleroma in reply to gregg57

My way of dealing with the psychological side of chemo treatment was to patiently wait out the first week after each chemo session (when your system is depleted), then actively get my body ready in the next two weeks for the next chemo cycle.

For me that meant brisk exercise, healthy eating, mental stimulation (meditative reading). I am not one given to "positive vibes" as that is more often based in mere optimism than reality, but a good, healthy, holistic engagement with life post-chemo does wonders. In other words, I don't sit in front of the telly and rue my condition or engage in self-pity.

CAMPSOUPS profile image
CAMPSOUPS in reply to gregg57

Agreed. And also felt some sort of comradery with others at the infusion ward.

Almost pride at times that I was part of a group of people doing the most possible to thwart the cancer.

gregg57 profile image
gregg57 in reply to CAMPSOUPS

Chemo got me used to engaging the cancer and felt I was doing something to fight back. When it stopped it felt like I was just waiting for the cancer to attack and that was something that bothered me a little. I know that's just psychological , but it was there.

dhccpa profile image
dhccpa in reply to Pleroma

Did your fingers/toes recover fully? Did you bring your own ice, mittens, etc? Thanks

Pleroma profile image
Pleroma in reply to dhccpa

I still have 95% feeling in my fingers (so I lost 5%) - the same with my toes. The facility where I get the chemo provides ice packets but not the mittens. It is really only the tips of your fingers you want iced, but all of your toes (not your feet.).

dhccpa profile image
dhccpa in reply to Pleroma

Thanks

gregg57 profile image
gregg57 in reply to Wazza52

I said the same the thing about chemo when I was first diganosed. I told my doctor "No way I'm doing chemotherapy." But my doctor kept trying to get me to chenge my mind so I looked into it more. I asked myself if I would ever do chemotherapy down the road if it was my only treatment available. My answer was "yes" so I thought, "Then why not do it now when it will do more good?"

I changed my mind and told my doctor I wanted to Docetaxel at around 1 month after diagnosis (she said I had 6 months from diagnosis to decide).

At this point, I am so glad I did it. Best decision I've made. And it may well be the reason I am still alive at this point. It's really not bad at all, you can read a lot about people's experiences with it here. And remember, you are only committing to one cycle at a time. If you really can't handle it, you can stop.

If you are only 2-3 months out from diagnosis, I would ask about starting Docetaxel and Abiraterone in accordance with the PEACE 1 clinical trial. Your doctor should be familiar with this.

That will give you the best chance for longer survival. It's well worth it and you're done with chemo in 18 weeks.

gregg57 profile image
gregg57 in reply to Wazza52

Another thing that really influenced my decision was thinking about how I would feel later on about ignoring my doctor's recommendation to do something that could have extended my life. I didn't want to be thinking later "what if..." especially if things took a turn for the worse.

Foldem profile image
Foldem in reply to Wazza52

I went back the day after and had a saline Infusion. Never got sick at all. Good luck!

Vangogh1961 profile image
Vangogh1961 in reply to gregg57

I had Docetaxel and then radiation through MD Anderson. I'm only 60, so as recommended, hit it as hard as you can in the beginning and as you're able. I'm on Zytiga now with ADT. Stage IV with pelvic lymph and maybe 2 on spine, (one was iffy), but all invisible on scan after the chemo.

dhccpa profile image
dhccpa in reply to gregg57

How did your hands, feet, tongue, etc., do during and after chemo? Can you do chemo anytime before ADT stops working but is still stable? I'm 3 years in now, PSA is 0.6.

gregg57 profile image
gregg57 in reply to dhccpa

I had no problems with extremities even though I did not use any ice gloves, caps, booties, etc. I did not get neuropathy at any time.

Early chemotherapy is recommended because it was proven in clicnical trials to add to overall survival. My doctor told me she wouldn't prescribe it if I waited more than 6 months after diagnosis because the benefit of taking it after that point had not been proven.

So there might be a benefit for doing at this point for you, but not proven to my knowledge.

dhccpa profile image
dhccpa in reply to gregg57

Chemo was not offered to me back when I first started ADT. I asked MO last week about it and he discouraged me, although I think he will do it if I insist. He said let's discuss in three months. 2021 was my most consistently low PSA all year. Low of 0.5, nothing higher than 0.6.

gregg57 profile image
gregg57 in reply to dhccpa

Surprised chemo was not offered, unless there were questions of your fitness. Looks like you had a signifcant tumor burden at diagnosis and early chemo makes sense for that. Nowadays, it's chemo plus Abiraterone at stage 4 diagnosis, but that's very new and wasn't offered back when I was diagnosed.

When were you diagnosed? Looks like you were diagnosed at stage 4. Is that correct?

If you get a good ride out of ADT alone, you could add a second-line anti-androgen like Zytiga or Xtandi down the road and potentially get years out of that. Many of us here have.

Something to discuss with your doctor.

dhccpa profile image
dhccpa in reply to gregg57

It wasn't a fitness issue. I suspect the doubling up of chemo plus ADT hadn't filtered into this area across the board. Interestingly, I've consulted with six oncologists over time and gotten conflicting recommendations. The PCa specialist at Moffitt in Tampa, whom I saw a year after beginning ADT, said just stay on ADT. Not sure what they all would say today.

gregg57 profile image
gregg57 in reply to dhccpa

The standard of care for stage 4 PCa at diagnosis has changed over the years.

Originally, it was ADT alone (before 2015), then ADT plus Docetaxel chemotherapy (2015), then ADT plus Docetaxel chemotherapy OR ADT plus Abiraterone (2017). Now it's ADT plus Docetaxel chemotherapy plus Abiraterone (2021).

Each step in the progression has added overall survival. I do think it's the Onologist's duty to explain this to the patient so the patient can make informed decisions.

My Oncologist explained it to me and even pushed me a little bit. I was initially opposed, but then came around.

Oct18 profile image
Oct18 in reply to gregg57

So I have often wondered why I was not started on chemo early. I was diagnosed in 2018, Gleason score 9, about five Mets in my pelvis, ribs, and spine. My first line of defense was ADT and zytiga, followed by Xtandi after my liver enzymes were raised. Six months after diagnosis my PSA was .02 and I had radiation to my prostate and Mets. ADT and Xtandi continued for three years. One new spot showed up last spring and I had radiation on that. I just had a PSMA pet scan, my first, and six new spots showed. My PSA has risen to 1.77 and the next plan for me is immuno therapy followed by docetaxel. I am being treated at duke as I sought them out as being more expert on treatments than my local doctors. I’ll be 50 next month and I am still very active. Any thoughts on why chemo was put off? My doctor told me it was because XTANDI had the same benefits of chemo without the toxins

gregg57 profile image
gregg57 in reply to Oct18

It was found that ADT plus Zytiga had about the same effectiveness in terms of overall survival improvement as ADT plus chemotherapy. I think a lot of doctors find it easier to avoid chemo because so many are against it.

Just wanted to echo Gregg57's wise comments about using chemo early and following the PEACE1 protocol if possible ( docetaxel+abiraterone). It is new. You may wish to email the following link to your oncologist to kick off the discussion:

prostatecancer.news/2021/05...

dhccpa profile image
dhccpa in reply to Tall_Allen

Thanks. I'll do that.

My diagnosis scared the daylights out of me. Everything seemed to happen so fast and I knew nothing about prostate cancer and treatment.When I had my first MO appointment and she said chemo used to be given towards the end but now given up front I knew enough to know chemo is strong medicine and I was elated to be given chemo. It felt like I had a chance for longer survival.

If your on the internet looking for medical advice from people without oncology training you are headed for trouble. All your receiving here is advice from personal experiences and clicking on links that direct you to web sites that are filled with points of view from non medically trained individuals. Docetaxel works and it doesn't, let your oncology team decide what's best for you, not wannabe internet cancer doctors that dispense advice that could very well shorten your life. Get two opinions and follow the science. The internet is filled with people who seem to know what's best for you. Will you trust them with your life?

Touche

So why are you here if you consider the testimony of real patients to be worthless or dangerous? I value the testimony or real people who have experienced chemo or whatever treatment option is being discussed. Who better than patients to describe the effects or efficacy of a particular treatment? This is where fear of particular treatments can be allayed. Isn't that what this support site is all about?

Everyone has a different experience from chemo. My husband had no side effects other than hair loss. He used the gel ice gloves and socks, changing them half way through each session. He ate ice chips continually during infusion. He drank tons of water, exercised daily, never missed work, and never experienced fatigue, exhaustion, or nausea. We were scared to death, but it was easy.

Not to diminish other’s experiences in any way, but to help you understand that there is a whole spectrum of tolerability and you don’t know how you will feel until you try it.

I have had an unfortunate experience with chemo. Diagnosed 2014, prostatectomy, EBRT, then ongoing Zoladex until July 2018 when added Zytiga.

That now appears to have failed - multiple Mets through spine ribs and pelvis, so started Docetaxel. Two infusions so far and unfortunately two major infections resulting in hospitalization.

Culprit for the infection is suspected to be my Supra Pubic Catheter (SPC) which i can’t do much about.

Just over the 2nd infection and next infusion was due in 5 days time but has been postponed by one week until I have spoken with Oncologist. 2nd infusion was a reduced dose and supplemented with Neulasta, but didn’t help much. Apart from that I feel well and would be happy to finish the 6 rounds if I could be sure of no infection.

After the last scan when we found the multiple Mets, my Oncologist stopped the Zytiga as it “clearly wasn’t working” so my Docetaxel sessions have been just that, Docetaxel alone. Now I know Peace1 was for newly diagnosed, but I wonder if there is any value in adding Zytiga back in with Docetaxel? On the other hand I think I have seen reports that Zytiga is worth trying again after Docetaxel is finished to see if it might reactivate? Appreciate any views.

Stage 4 here in August of 16, my doctor went straight to chemo, taxotere. 6 rounds and a bone shot the day after. The chemo wasn’t to bad but the bone shot put me in bed. When the chemo was done I was put on Xtandi. Also I get a Xgeva and elagard shot every 28 days. PSA is 0.05 . So far so good 😀😀😀

You should get an opinion from an Sbrt specialist about getting a spot treatment of that metastasis on your spine.

Chemo sucks but you’ll get through it. The concern I would have is undergoing chemo with current Covid surge, it will take its toll on your immune system. I have similar dx underwent chemo 6+ years ago, I’m still here to talk about it.

Ed

gregg57 profile image
gregg57 in reply to EdBar

Saw on another forum : Chemo's a bitch and then you live.

I was Gleason 9 stage 4 with multiple bone metastasis at 52. I was immediately started on ADT to lower PSA then a few months later started Chemotherapy, 6 treatments of Docetaxel then followed up with radiation to the prostate. That was in 2017 and I remember before I started chemotherapy that I was reading a lot of negative information about chemo and l was worried too. I really had no idea what I was up against. I finally found the right information and fortunately did the right thing. You are lucky you have found this site early and you can get correct information from men who have actually had to go through these therapies. You will need to do your own research and try to understand the treatments that are available for you. Follow the science and don’t get lost in all the “cancer cures”. I know I was looking for the magic bullet and finally realized there wasn’t one.Good luck, follow the Peace1 protocol and get those bone Mets radiated.

Zero side effects from chemo. My husband tried chemo 2x, 2 years apart. Unfortunately neither treatment worked. He is 60 years old. Trying to get Lynparza linked up with insurance and specialty pharm at the moment. What a nightmere.

WazUP?,

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Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 01/09/2022 3:59 PM EST

Your oncologists are your best resource, but for whatever my story might be worth to you ... I'll be 70 this year, diagnosed stage 4 metastatic December 2020. Bone scan showed metastasis to my entire skeleton, I needed 2 transfusions due to the extent of marrow damage. After a couple of months of adt to allow sufficient recovery to survive chemo, I had 7 sessions of docetaxel, together with bicalutamide. At diagnosis, my PSA was over 3,800. It dropped to 6 initially on chemo, but started doubling every month to eventually rise to over 1,000. We stopped docetaxel and switched from bicalutamide to abiraterone. PSA dropped 90% or so per month for a couple of months but is now rising slowly again, last test mid-30s. I'm getting another bone scan and some ct scans next month. Nevertheless, I feel great, am slowly building back strength and endurance, am pain free, once the correct regimen was developed. We all respond differently. We are fortunate to have so many options available. My best advice is to pick a course if action, work it until it doesn't work, reformulate and go at it again, and never,never give up. Good luck to you in the years you have ahead of you.

Your questions must be answered by your MO. I refer you to the Stampede trial. With numerous metastases, chemo is the go, with HDT. Also, Zytiga.

One of the things we found in our more than five year journey with metastasized prostate cancer is that everybody responds differently to drugs. So honestly, you have to try them and see. That said, you can always stop them if you react badly. We’ve stopped a drug twice that he simply could not take. Pat did six months of chemo when he was initially diagnosed. They don’t give you the high doses that they give breast cancer patients because they’re simply trying to knock the cancer back. Not cure it. Pat used to say he felt like he was coming down with a cold or flu all the time. He didn’t feel great but he didn’t feel awful. He lost 30 pounds in six months because he didn’t have much of an appetite. The only thing that tasted good to him was coconut. Weird. So I made him coconut milk shakes every day with a high protein drink, organic coconut milk and flakes, hemp and chai seeds for extra protein. Anything to keep his protein levels up. We never missed a session. He couldn’t eat with metallic flatware. It’s a thing, look it up.

It wasn’t a cakewalk. But it wasn’t as horrible as he thought it would be. He said he would never do it, too. I simply didn’t give him the choice. And with an initial PSA of over 1500 he’s glad he did it. Because he’s still here.

Wow.His post puzzled me. Few days ago he commended our site and all of us here. He also recommended chemo to someone which is directly in opposition to what he said in this thread about not listening to people here.

Unless he has a good excuse (ADT brain, PSDT, etc.) then he is dead to me.

Totally uncool.

CAMPSOUPS profile image
CAMPSOUPS in reply to CAMPSOUPS

PTSD.And maybe I shouldnt be so cold. That type of behaviour actually does spell mental distress. An illness. A sickness.

WSOPeddie profile image
WSOPeddie in reply to CAMPSOUPS

Yes. I had that same feeling after I called him out for his 'message'. I suppose I could delete that. I think I will do that now. Done.

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