Question for those in similar situation

[LVRob129]

My friend just got diagnosed with T4 prostate cancer psa 910. Bone scans and CT show it has spread everywhere, bones, lymph nodes, back, hip, lungs.

Anyone have any success with treatments?

[Hidden]

Nuke it with chemo to start the show. Other treatments do a great job at hiding cancers, chemo kills it.

[Shooter1]

Get on ADT (Lupron) and follow up with chemo. I did 9 cycles.. My hip, lymph nodes, bones (only 5 lesions) all cleared up with those and the addition of Xtandi (which made me an invalid) until I couldn't stand any more and cut the dosage... Now 4 years after drs told me I had 12-18 mo max, I am still here. Best of luck to your friend.

[Kaliber]

Same here. Diagnosed 27 months ago ... psa 1400 - 1600 ... mets spread to literally everywhere , body chemistry totally failing. First offer of care inpatient hospice. Instead I choose ADT. Started Lupron Xtandi Zometa immediately. Now, 27 months later my psa undetectable at <0.1 and my T less than 20. I’m a Xtandi zombie , yes, but it’s 27 months later and I’m still chugging along , trashed by ADT but still alive to the surprise of my medical team and especially me. Lupron Xtandi a success for me , there are other choices that will be mentioned here too.

Tell your friend to come join the other warriors here and be in great company. We’d love to see him join.

Best wishes 🌸🦋🌼🌻🌈❤️❤️❤️

[bud_manning]

I to am stage 4. ADT is no longer effective for me. It bought me some time. PCa is a tough nut. and it adapts quickly to live without the testosterone. The "Kitchen Sink" principal applies here. The medical community is starting to realize 'try this and then that and then this' is not working well except for morticians. Time to throw everything at it. PCa even goes dumpster diving, salvaging nutrients from dead cells. People are turning to off-label drugs like metformin, mebendazole, doxycycline, statins, etc. that have proven to have strong anti-cancer properties. They are old off-patent drugs so no one will spend the millions to do human trials. Google off-label drugs to fight cancer, starving cancer, blocking cancer metabolic pathways. Some of these drugs are known to enhance SOC, chemo and ADT. My oncologist prescribed for me. If you have a caring one he might. You have to do the research. Show the doc you know what you are doing. That is the hard fast rule "You do your own research". I started the off-label in February. Trying to get the Onc try some new things and maybe old to go with the off-label. Praying for your friend. Keep us updated. May God bless us all.

[j-o-h-n in reply to bud_manning]

Greetings bud,Of course you're not ready to die yet..... You have a lot of life to live.... so full speed ahead.... and glad you posted...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 03/29/2021 4:53 PM DST

[Boywonder56]

Lupron/ erleada...

[2dee]

Yes I'm the same. Given 6mos in 2018. I'm still here. Follow the SOC treatments prescribed by your MO, UO, RO, etc. Get 2nd opinions to educate yourself.It will work for some time. Take what you can get...

2Dee

[Justcallmeamy]

Your friend has very personal choices to make. For some it is quality of life and for others it is quantity. Talk to your friend and help him figure this out. If he wants to fight, by all means help him find out what his good options are. If HE WANTS ONLY QUALITY, please respect it. Best of luck.

[maley2711 in reply to Justcallmeamy]

I don't think there is much quality when a man is going thru the last months of life with PCa?? Are you talking about ending one's life before cancer does the job? Really, I think it is .....are you willing to endure some probable very bad SEs from additional treatments/medications with a good possibility of living at least an extra X months, or would you rather have a shorter life and not have extra months spent with lower QOL?

Not really a matter of QOL vs more SEs.

[Justcallmeamy in reply to maley2711]

For sure I wasn’t referring to ending ones life earlier than nature. Although that is a viable alternative in many places and it is a very personal decision that we should not judge. Choosing Palliative care is also an option. My point was that everyone is entitled to make the choices they wish, unfortunately lots of people, including doctors don’t always allow room for this. Some want those extra few months to see their child married or the grandchild born. Some don’t want to suffer one extra minute. I have had 2 breast cancers and my husband in living with PC. Trust me, we have had time to look at the choices. Good luck.

[maley2711 in reply to Justcallmeamy]

Do we agree....it boils down to .... would you rather have a shorter life and not have extra months spent with lower QOL? The QOL is likely to be much the same at the end....horrible...whether you decide to try extending your life, or not.

[larry_dammit]

August of 16 my scans looked like a Christmas 🎄. Went in and started casodex. ? Prednisone , then in 2 weeks started Taxotere chemo 6 rounds with a lupron shot and a bone shot monthly. Rough start but still here. Been on Xtandi since finishing the chemo Good luck warrior 🙏🙏🙏🙏🙏

[Hidden in reply to larry_dammit]

Hec yah!🙏

[lincolnj8]

I had a very similar diagnosis. I was put in the hospital. cancer everywhere. Lit the scan up like a Christmas tree. In my bones, lymph nodes, organs, just everywhere. psa was over 800. They gave me 4 pints of blood (were going to do 6). The bones and liver work together to make blood. There is an alkaline phosphate number that should be around 100. Mine was at 3000. So 3 days in the hospital, 4 pints of blood (the were going to do 6). They started out on a treatment biocum? (I don't remember the name) for 3 months then on to Zytiga and prednisone (5mg). for 3 years now. psa undetectable. Alkaline phosphate number is 75. Many B-12 shots, especially in the beginning. They give me lupron, Zometa and bone infusions every 3-6 months for bone strength. 2 oscal pills a day plus a general vitamin pill. B-12 shots monthly now. Also Pantoprazole sodium for acid reflux. Hope this info helps.

[Hidden]

My friend was diagnosed in June 2016 with a 1505 PSA and extensive bone metastasis. Six months of chemo along with Casodex and Zometa to strengthen his bones. Casodex worked about 18 months. Switched to Zytiga and it worked about 2 1/2 years. Bounced around a bit and he’s currently trying Lynparza, as he’s positive for the BRCA-2 mutation. He was on full dose for two months but the side effects were too severe. He’s now on a half dose. His energy level and pain levels are much better but the effects on his mind are still pretty severe. So we are looking for another choice at this time. That said, he will soon be five years from diagnosis. It is fightable. Not always a pleasant fight. But doable. You’ve made a good step finding these guys. They are a blessing. Arm yourself with knowledge and make your decisions from there.

[j-o-h-n]

Tell your friend "there's always hope".........

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 03/29/2021 4:57 PM DST

[Hidden]

Welcome LBRob129! We are lucky in life if we have one true friend. What’s your friends age and health status besides the pc? The harsh truth is that stage #4 (meaning metastatic ) is not curable. The spread all over is the problem . Mine was all inside of my pelvis .I had a low PSA of 20 and I was T-4 non op. I did 8 weeks imrt and Lupron plus another test adt drug that I’m still on six years past dx. It requires harsh action to push an aggressive pc down . He will suffer drugs and chemical castration. They want to cut our testosterone. Stay by his side .With love luck and gods will he can survive for years. Not with out misery and suffering however. Keep his spirits up . He needs a strong Reason to endure . Good job finding this cite for him. We will give you the low down.. Take care . Keep him positive!

[LVRob129 in reply to Hidden]

He is 59. I went through prostate cancer 10 years ago but I was lucky it was localized. These heavy treatments sound bad for quality of life.

[bud_manning]

I came across this article today. Duke researchers have found a way to starve PCa without ADT. May even work with mCRPC.

scienceblog.com/521886/new-...

[Doseydoe]

My success came off the back of ADT (casodex and eligard) starting the day my biopsy came back with GS9, PSA 50, a cystoscopy showing a bladder full of tumours, scans showing three spots in my pelvis and only one kidney working. I started chemo ASAP doing nine bags of docetaxel. I had a TURP, a TURBT, a couple of ureteral stents and finished it off with 20 radio sessions. It took nearly a year of treatment but my latest PSA was 0.09 and both kidneys are now working fine. My take on it all is the ADT starves the cancer, the chemo kills it microscopically and the radio targets specific areas. From my understanding, what I went through is the standard approach and it worked. I am so grateful to my medical team and to the brothers and sisters here for their continued support. All the best, 😎 DD.