Hello all,My 50 year old father was recently dx. with prostate ca. PSMA done yesterday confirmed mets to multiple bones and lymph nodes in chest, abdomen, pelvis, and clavicle. Gleason 9. PSA 3.74. Doubled in since May. We meet with the oncologist next week. He is having trouble peeing and hip pain. Other than those symptoms, he feels good. Spirits are down but that's expected with the diagnosis.
I am overwhelmed with information. Reading some of your posts have given me hope and I wish you all the best in your journey.
Anyone that was in a similar situation have any recommendations? What did they start you on initially? Did you work during your treatment?
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Scoobydoocrew
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Scooby, Tuff Nutt here. I have an extremely aggressive rare variant. First signs the cancer was raging, a swollen leg twice its size after a brain mri. Second, within one month after that I joke with my my deepest friends I have the hottest balls and penis on the planet so hot that we thought something was pushing against pudental nerve. Third when I peed it was like peeing the lake of fire and it got worse. Urgent care told me just cause you eat a jar of jalapeños it doesn’t manifest itself in your pee. Fourth my pelvis and ischiorectal fossa hurt so bad after just one month it I had to use a stand up Walker in church. Last when I did get the mri to discover where the cancer had spread it hurt so bad when they put a big old long hose with something as big as light bulb up my rectum, I screamed for an hour, please how much longer? When I drove home I had to push up with my left foot on the floorboard as I couldn’t sit on the car seat.
your dad in my opinion is pretty symptomatic as my MO stated in her notes for me.My MO gave me a shot of Degralelix in my belly. She told me at onset, record all I say. She explained differences between castration sensitive and castration resistant. Now the Degralex is very fast acting snd goes right to the cancer whereas lupron can actually increase the testosterone the fuel for the cancer . She predicted it would fail and it did. But I was able to sit down. But had stragglers that I could feel in my butcheek. 30 days later she started me on abiraterone to round up the castration resistant stragglers. Then a three month lupron shot and docetaxel chemo which I flunked, with an extremely weakened immune system WBC 4 or less I wound up pneumonia. By Gods grace I’m here today to as a miracle and to offer you what I know.
ok talk to your MO to see if Degralelis can start your dads therapy. My MO saved my life by taking it right to the cancer arresting its undifferentiated cell growth.
Talk to MO for most aggressive treatment possible.
I no longer have the hottest balls on the plant but I am one Tuff Nutt. And the cancer picked the wrong person to mess with. Bulk up, bulk up, bulk up. They want 5 days cardio and two to threee days weights or bands, people who do that do better. Sorry to gross you out but it’s reality, pray to God he will have mercy on your father and enlist friends to do same. tell your dad to fight for his kids, never give up. Best the one and the only Tuff NuttoCrack!
Thank you for sharing your story! Wow. You are an inspiration and I appreciate all the information. So glad you are here to share it. Sending lots of prayers your way too!
😍 your dad and I need them, please give me your dads nickname. My HOA has a pergola where I like to pray sometimes overlooking a lake, alligators too. Keep me posted on your dad treatments! It’s a tuff tuff situation to be in. Cast thy burden upon the Lord and he will sustain you. And tell him to think positive. The meds will make him want to cry sometimes. It did me, when my nurse daughter comes to me after realizing the implications of this disease hugs me starts bawling and says “Dad I hate this for you” what could I do except but to bawl with her? Tell your dad he’s got a FRIEND. Best
Father God who knowest all things hast all power and sees the plight of the men with this disease I pray for all, for courage for strength and most of all love for their families to overcome this wretched disease. Please give MrRichie the hope the stamina the strength the will to overcome and to show his sons and family what he is made of, to be among the first to be healed. Bless you father. In Jesus Name I pray. Amen. God bless you Scooby and may your father see your love. Best
I started with casodex, zytiga with prednisone, lupron and xgeva. Similar symptoms that your dad is experiencing went away quickly, but side effects kicked in. Mainly hot flashes due to lupron.
Don't know which country you're in but if the US the standard of care (SOC) is triplet therapy of lupron, Zytiga or Xtandi plus docetaxel chemo. Some other countries such as the UK it's doublet as above without the chemo. They will keep this going until it fails and then move to other treatments. Good luck to your dad.
After studying many options and spending one month on ADT only (which brought my PSA from 70 to 15) I converged with my MO (with my great surprise) to the protocol used in ARASENS clinical trial (which is basically what Tall Allen is suggesting).
It looks like it gives a good progression free and overall survival. It's a game of postponing while some new therapies get developed (and there are many being tested at the moment, even for bone metastasis, which are the real deal for us).
ARASENS uses standard ADT + Docetaxel (chemo) + Darolutamide, it is quite aggressive, especially for the chemo part. I am used to work with numbers and I consider it a good treatment based on the stats and considering that I am 50 and in great shape (apart from PCa!). My MO agrees with that and also many experts around the world (Dr. Eugene Kwon from Mayo Clinic is an advocate for chemo within triplet therapy from the beginning).
Also psychologically I think you are more in the mood of facing something aggressive at the beginning of the journey.
Then everyone is different, there are guys that have zero progression with ADT only, even for 10 years straight. They are exceptions to the rule, I feel more comfortable considering myself in the "average" that would fail it within 24 months.
Ah, have your dad get a complete genetic panel in case they have not done it already , as some genetic deficiency can drive you to the best cure (for example in some rare cases immunotherapy works very well with this kind of cancer).
I hope your dad will get better soon, it's a tough situation, very tough but not desperate nowadays!
Hugs,
Max
P.S. exercise exercise exercise, especially strength training which preserves muscle and promotes bone density
I forgot one thing: genetic panel should be repeated as the situation evolves. Cancer mutates, and when it does it may create some genetic flaws in its structure. So you could be for example BRCA2 negative today and positive in 3 years, and that could be a great advantage.
Hi. Thank you for supporting your Dad. Totally follow Tall Allen's advice here although still needs to be discussed with medical oncologist. I'm over 3 years in. Spread to bones and lymph nodes. Very high starting PSA. Started on Casodex for 1 month, then Lupron injections. Pain went away. Enzalutamide (Xtandi) started. However, even in 3 years the standard of care has moved on to the triplet therapy as outlined by Tall Allen. Check for the possible mutation as well. Consider counselling for yourself. Encourage your Dad to exercise. Good luck and my prayers.
My story is in my profile, but the short version is that I got very good results from ADT and chemo.
Chemotherapy was not nearly as bad as I had feared beforehand. I did continue to work (desk job) during the chemotherapy period, but I have to qualify that statement a little. On chemo days I would take the whole day off. And I was able to combine vacation days and holidays in a way that let me take a solid two weeks off during the recovery period after the last infusion.
Some people here will urge you not to do anything in the area of alternative medicine, but I for one am confident that my being 15 years in is due to lycopenes and heat, in combination with Lupron. Read my bio. I have managed to keep the met growth minimal. However, with G7 it is not the same as your father's
Def do as much research on your own as you can and as necessarilyso states look into alternative medicines, as ivermectin n cbd oil seems to be working well after 7 mo of soc for myself,,, good luck n keep the prayers going…😁😇😇
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