Hi all

[Majedsh]

Hi allFor how long have you been fighting grade 4 metastatic prostate cancer

And so you have any tip or advice that can help my husband who was newly diagnosed 🙏

[Lslal]

Since Feb 2022. It was a shock to start with and the hardest part was having to tell my daughters.

I had triple therapy and all is okay. I exercise at least 6 days a week and have cleaned up my diet.

[fireandice123]

About 7 1/2 years. The details are in my profile.

[JohnInTheMiddle]

Starting my fourth year. Triplet therapy. Diagnosed as Stage 4B high volume. So far so good 😃 Fatigue of course. Working part-time. And working hard to maintain exercise, both aerobic and strength. This short summary covers a lot of details.

As you are able to, please be so kind as to fill out your husband's medical bio for the forum.

[shortPSADT]

15 years oligometastic disease, treated with SBRT every couple of years.

Also, Casodex from time to time, gym workouts 6 days per week, and a plant based diet.

[dhccpa in reply to shortPSADT]

Definitely an impressive run.

[Shellhale in reply to shortPSADT]

It seems what you are doing is working very well. Do you also take ADT at all? Husband has consult to see if lymph nodes are an option for SBRT in a few weeks. Also oligometastic.

[shortPSADT in reply to Shellhale]

ADT never, I hope. That's why I do frequent PSMA scans and use SBRT instead of ADT. Of course, Casodex is considered by some as a mild ADT and without many side effects.

[Shellhale in reply to shortPSADT]

He takes Nubeqa. It may be losing efficacy. So started Orgovyx just for a week on and then go off again. Because he doesn't tolerate it well. I am hoping SBRT will take care of these 3 mets. There was 1 new met that was larger. I am glad to hear SBRT gives you good control. I am hoping for the same results.

[shortPSADT in reply to Shellhale]

SBRT is nearly 100% effective on these mets. The only downside is "they" just come back somewhere else after a year or two, and I get them zapped again.

[Shellhale in reply to shortPSADT]

How many can you continue to zap? Is there a way to keep them from not coming back? Hopefully with these new meds coming out there will be something to keep them away.

[shortPSADT in reply to Shellhale]

Usually the max is 4, although some doctors will treat 5. Drugs like Xtandi and Zytiga or Lupron (and some of the newer ones that I am not familar with) can delay or prevent progression for a long time. It's just that I am not interested in going that route until I have no other options.

[Shellhale in reply to shortPSADT]

I don't blame you for not wanting to take hormone drugs and I hope you never have to worry about taking them ever again. I am hoping my husband has the same results.

[Brysonal]

I went metastatic in 2021 following a failed HIFU.

I had bone mets throughout spine, rib, shoulder blade.

I started hormone therapy and early Lu-177 in November 2021. 3 infusions followed by 3x Docetaxel, 20 vmats, 2 brachitherapys, some SBRT and Apalutamide and after 7 months of ‘throw the kitchen sink at it’ I went undetectable on both PSA test and scans.

No idea what did what!

I volunteered for the OVM-200 vaccine as I was stable at phase 1 trial. No idea what that did!

Just didn’t want anything left on the table’

yesterdays PSA was still undetectable. Currently on Apalutamide as a monotherapy.

Have booked a PSMA pet scan as a precaution as it’s been 18 months now.

Regards

[Scousegit in reply to Brysonal]

Wow you really have thrown everything at it and well done. This is really encouraging. Keep up the great work and let us all know how you're doing please. Good luck further.

[Shellhale in reply to Brysonal]

Can you tell me how Apalutamide has been for you as a monotherapy? Do you still have normal Testosterone levels? Thinking about switching for husband.

[cambridge749 in reply to Shellhale]

It is very important to have a good urologist/oncologist. The impact of some drugs on your cardiovascular health and bone health needs to be monitored. I am on Orgovyx and Nubeqa [darolutamide], after a reaction to apalutimide. It addition I had SBRT. I work out in some form [after consultation with a physiotherapist] 7 days a week. It is hard taking the first step. Both PSA and testosterone are unmeasurable.

Every person is different, but one factor to take into account is psychological. I do not experience loneliness and thought the SBRT was nothing so spouse did not accompany me. It was an unexpectedly lonely drive.

[Shellhale in reply to cambridge749]

Husband is also looking into SBRT. The drive will also be long for him so I will consider that. He can't tolerate Orgovyx. No side effects on nubeqa but PSA has been rising .

[Brysonal in reply to Shellhale]

Well I only did it due to having clear scans and decent length of time as undetectable plus my Helsinki MO said though I was stage 4 he had me in a curative path! I am being closely monitored. My testosterone rise is slow and not at normal levels. I had to add tamoxifen to prevent boob growth even though my breast buds are irradiated. Getting on fine working full time, heading to dolomites tomorrow with family, supporting my football team Playing with my grandson and living life but no sex. Enjoy a cuddle very much though!

[Shellhale in reply to Brysonal]

Thanks for your reply. Glad to hear how well you are doing. Clear scans that is a blessing!

[GreyDragon55 in reply to Shellhale]

going on 6 years and holding strong…have not missed a single day of work even thru the 7 weeks of radiation (first round) and then 3 days of radiation last year for a small spot in my sternum I currently do a 6 month Lupron injection and daily Xtandi…has not slowed me down at all and at 70 years old in April that says a lot…positive mind set and a good support system (family and loved ones) helps more than you would think. I’m holding good at less than 0.01 (undetectable)

[Majedsh in reply to GreyDragon55]

God bless you

[Shellhale in reply to GreyDragon55]

Yes mindset is everything! God Bless you with continued health.

[garythomas]

Since 2013.

[lcfcpolo]

Diagnosed 4 years and 10 months ago. Widespread to bones and lymph nodes. Enzalutamide and Lupron. Some repurposed drugs such as Metformin, Atorvastin, Mebendazole and Doxycycline. A probiotic. Also Your-Phyto and Prostaphane supplements. Melatonin to help sleep. Absolutely no idea what works, just trying to screw with the cancer.

[Boltonlanding in reply to lcfcpolo]

If I am reading you correctly, you never had chemotherapy? I am 3 years in with Eligard and Nubequ. The lowest my PSA has ever gone is 2.8 with 3.4 being the average. Because of age 78 and other health issues I refused chemotherapy. My urologist is happy it is staying level and my oncologist would like it lower, but understands !

[lcfcpolo in reply to Boltonlanding]

No chemotherapy. I wasn't offered it to be honest. Triplet therapy only came in later. It is my next treatment though once Enzalutamide stops working

[GoBucks]

Since 2017. Currently off all cancer meds since June 2022.

[Yzinger in reply to GoBucks]

what? how?

[GoBucks in reply to Yzinger]

After 4.5 years of Lupron & Abiraterone, all while<0.01, I stopped taking Abiraterone after June 2, 2022. My last 6 month Lupron shot was December 2021. I stopped in accordance with an ongoing clinical trial. ascopubs.org/doi/10.1200/JC... am not actually enrolled in the trial, just doing it. My T did not recover so about 5 months ago I started supplementing with gel. Last week I finally hit the low end of normal. PSA is still <0.01. I feel great.

[Orange95 in reply to GoBucks]

Amazing, I really hope it continues for a long long time.

[GoBucks in reply to Orange95]

Thanks. Can't decide if I'm lucky or blessed. So I'm going with both.

[Woodstock82]

70 months so far. Details are in my profile.

If he hasn't already, he should establish and maintain a regular strength-building exercise program. It doesn't need to be extreme or aggressive, but it should be frequent and regular. It is the best way to stave off the most common side effects of androgen depravation therapy.

Most treatment are hard on the immune system. Do all you can to support it, with both diet and meticulous hygiene.

Anemia and diabetes are risks to watch for.

Protect the kidneys, and stay well hydrated.

It's a marathon, not a sprint. Hang in there.

[Wgly]

Newly diagnosed with stage 4 metastatic PC in mid part of '22. Asked for the most aggressive treatment that at my age was radiation and casodex, immediately followed by Lupron, Xgeva and Zytiga. PSA dopped to undetectable by end of '22, and has remained so. In Jan '25 started drug holiday and so far so good. Age 84. This stuff can work (except for side effects)

[InqPers]

Since 2021. Oligometastatic, had triplet therapy including 24 months of ADT/Zytiga. Also had IMRT. In remission with no evidence of disease. Off all treatments for 1.5 years now. I get multiple scans per year and quarterly PSA checks. I feel almost too normal now and hope this will be a "long-term" holiday. My advice is to maximize treatment at the beginning if fit enough to tolerate. Gives you the best odds in my humble opinion.

[NecessarilySo]

13 years. I messaged you a few days ago about heat, lycopene, magnets. Beyond that, avoid beef. Eat a lot of black pepper, turmeric, and cardamom, also vitamin D3. Fight fatigue with coffee.

[mababa]

Majedsh, there’s no info on your husband. Everyone who’s fighting PCa is in a different phase so there’s nothing relevant that can be shared that could pertain specifically to your situation.

[Majedsh in reply to mababa]

He has acinar adenocarinoma Gleason grade 9 it has spread to lymph nodes which are nearby the prostate not away and to 8 spots in the bones 3 in the spine one in the fumur one in the shoulder and both sides of hipbone one in the leg

His psa when all this started was 38,now its 55

[Skilover]

It will be 13 years for me in June. Triplet therapy is the SOC now and for the last few years. But- it wasn't SOC when I was Dxd. So, I started on Lupron and added Abiraterone shortly thereafter and have remained on the 2 medicines. I did have the largest tumor (in my left acetabulum) radiated 2 years after DX and then again about 3 years ago. I also had a verterbra radiated about 2 months ago. I might have to add chemo in the coming months but have been trying to hold off from doing so with the radiation. My advice: do everything you used to do to enjoy life(or as much as you're able). Try and eat healthy(er). Be grateful for what life has offered you so far. Hope for the best and prepare for the worst (literally- "get your affairs in order rather than waiting til you become "really sick and are unable to do so or you find the tasks involved to be too large). Enjoy the small things in life and definitely spend time with loved ones. Look at the half-filled glass as being half-full, instead of half empty. Good luck to you!

[Skilover]

Also- find a experienced MO who you respect and get along with well. Ask questions!

[hansjd]

7+ years. see bio. Good luck with your PC journey together.

[dhccpa]

7 years now. Diagnosed with multiple Mets. I've done regular treatment since diagnosis and also numerous alternative methods. Been on Lupron all the way through. Recently had Provenge immunotherapy and full radiation to prostate and pelvis area. PSA hit all-time low of .39 on 3/14/2025.

Get on regular treatment and start exploring in detail.

[Majedsh in reply to dhccpa]

ThanksI ordered ivermectin and fenbedazole and cell defense

I didn't receive them yet

But when they arrive, is it okay to give them to my husband at the same time he's doing chemotherapy (daxetoxel)?

[dhccpa in reply to Majedsh]

I've never had chemo, but many have taken ivermectin an fenbendazole at same time as chemo. Some say the combo may work together.

Not sure about cell defense. What is in that?

[Yzinger in reply to Majedsh]

Please just be careful and investigate each therapy or drug mentioned. I am not against them but afaik no concrete data that these are safe or help. Just sayin', save the hate guys.

[IVA65]

July 2024 Gleason 4+5. Get on triple therapy.