Metastatic prostate to bones, bladder and liver. Stage 4 and Gleason score 10

[Roshni-light]

Has anyone had experience with metastatic prostate to bones, bladder and liver. Stage 4 and Gleason score 10. My husband of 36 years was diagnosed about 15 months ago. Started using Lupron, Xgeva, zytiga & Xtandi and tactotere. Nothing has worked and now he has completed 10 rounds of radiation. Also started Jevtana and developed severe diarrhea which required hospitalization. We discovered the progression to liver with multiple lesions. He has lost 10lbs in less than 10 days. PSA remains high at 112, are these symptoms of the body not being able to keep up with cancer? Oncologist has never seen such an aggressive form of cancer that refuses to respond to any treatments. How much time is left?

[NPfisherman]

Has he had genetic testing done yet of the cancer? He may have multiple DNA abnormalities which may indicate immunotherapy drugs that could help. The Checkmate 650 trial info is posted online and there are multiple trials using these drugs like Keytruda, Opdivo, Yervoy.... Clinical trials site below:

cancer.gov/about-cancer/tre...

It sounds highly aggressive and possibly could be neuroendocrine type. Nalakrats posted info on Decitabane....post before yours....This is a possible treatment for neuroendocrine type..

May God grant his Doctors the knowledge to help him .....

All the best,

Fish

[Roshni-light in reply to NPfisherman]

They did DNA and gene testing and found nothing of value. The liver lesions were found within 3 weeks of a prior scan . Clinical trials are an option, but our oncologist doesn’t feel he has time for the washout period.

[NPfisherman in reply to Roshni-light]

Did he have Provenge? That might be an option.... Also, perhaps using "right to try" for Darolutamide (new drug--not yet approved)... or the approved drugs....Keytruda, or ......Opdivo and Yervoy--Checkmate 650 drugs... Best of luck...

Don Pescado

[Raymonda100 in reply to NPfisherman]

My understanding is that Provenge is not indicated with mets to organs.

[NPfisherman in reply to Raymonda100]

No, Provenge is personalized immunotherapy but it has been shown to prolong survival and boost the immune system... this is one wicked beast....

provenge.com/

[Raymonda100 in reply to NPfisherman]

I know how Provenge works. My husband is receiving it. The Duke Cancer Center told us it is not indicated in men with a high volume of mets in organs.

[NPfisherman in reply to Raymonda100]

I reviewed literature and it is recommended for nmCRPC.... however, the fact that he has been on 6 drugs --- Started using Lupron, Xgeva, zytiga & Xtandi and tactotere. Nothing has worked and now he has completed 10 rounds of radiation. Also started Jevtana and developed severe diarrhea which required hospitalization.

Perhaps, BAT would have been a better suggestion, but at this point--I would consider all options under right to try, and especially trying ones that are already approved and well tolerated like Provenge.... I'm not an Oncologist.... just another sufferer on this hell ship looking to help others ... as I said initially....

May God grant his Doctors the knowledge to help him .....

All the best,

Fish

[Break60]

Sorry to hear about such a tough case. Just wondering: did he have annual PSA tests?

[Roshni-light in reply to Break60]

Unfortunately he procrastinated about annual testing. Lesson to learn

[Break60 in reply to Roshni-light]

Wow! At least others may benefit from realizing the importance of testing. God bless you and hubby!

[lincolnj8 in reply to Roshni-light]

My doctor recommends a baseline psa test at the age of fifty as so do many doctors. How much time does he have? 14 months ago my family was called. I was in the hospital getting blood with stage 4 prostate cancer metastatic to bones, liver, lungs, lymph nodes, just everywhere. Slowly I got better and there is an excellent chance your husband will too. The zytiga, prednisone and Lupron plus tons of b-12 shots and vitamins slowly brought me back. Your husbands meds may be different. Keeping you in our thoughts and prayers..

[E2-Guy in reply to lincolnj8]

I think that 'Roshni-light' means that she and her husband have been married for 36 years. I assume he is in his late 50s or 60s?

[lincolnj8 in reply to E2-Guy]

I see, my mistake. Thought I seen a picture of a young family..

[E2-Guy in reply to lincolnj8]

Hopefully he is not 36; however, not unheard of. Bad enough when a man in his 50s or 60s gets this sh*t.

[Roshni-light in reply to E2-Guy]

Yes- married for 36 years. He is in his early 60’s

[Roshni-light in reply to lincolnj8]

He’s also Mets in bones- every single bone! Zytiga and Xtandi, taxotere has not worked. Takes lupron, B12 shots, prednisone, CBD, dilaudid, oxy, Xgeva & various supplements/vitamins. Liver biopsy being performed as I write- oncologist wants to see any new mutations.

[lincolnj8 in reply to Roshni-light]

Roshni-light, I wish the zytiga would work for him like it did for me. I also get the Lupron, b-12 shots and prednisone. I also have mets in many bones. Hopefully in a few days his body will respond to what he is taking These are great treatments he is getting. Keeping him my thoughts and prayers.

[GeorgeGlass in reply to lincolnj8]

Hi Lincoln. What was your Gleason and doubling time prior to starting adt?

Someone, maybe nalakrats or Pat O'Shea, on this site once told me that regular B12 supplementation might speed the metastasis. Did your doc say differently?

[lincolnj8 in reply to GeorgeGlass]

On my way home after blood tests at my family doctor, my daughter who had to drive me because I was so weak looked on her phone to see my lab results and she drove me to the ER. I was admitted instantly. My hemoglobin number (the one that was supposed to be 13.5) was under 3. Met my MO at the hospital. He put me on oxygen and blood transfusions. They checked me every hour to take blood pressure for days. Don't know what my gleason was. Probably wrote down in my large notebook. 3 days earlier I had a full body X-ray with the sugar solution in my blood. It lit up like a Christmas tree. My Mo said it was a waste because of psa at 800, a blood phosphate number at 3000 and my hemoglobin at around 3, what was important was getting the blood better. The b12 shots helped get my blood stronger. I don't have the answers to many of these questions. Never had or knew what a psa number was until 4 weeks before being diagnosed. (my family doctor of 15 years never mentioned or took a psa test) Hard to remember much at the time because I was so weak. Now psa is under 1, blood phosphate number is at 100, and the hemoglobin blood number is at 12.5. Get a B-12 shot monthly with an infusion for my bones. Only one B-12 shot a month. Never questioned my doc about the b-12 shots. Just so happy with my results.

[GeorgeGlass in reply to lincolnj8]

Thanks Lincoln. I appreciate your thorough response. I don't know you but I'm just very happy to hear that things are going well for you especially considering the state that you're in that's fantastic keep it up keep going strong and enjoy life! 🙏

[lincolnj8 in reply to GeorgeGlass]

Thanks GeorgeGlass. Yes lets enjoy life. A few months ago at a doctors visit with my MO. I told him my side and ribs kind of hurt. He said what were you doing? I said cutting and stacking firewood. He laughed and said "and at you age, and you wonder why your side hurts" Showed me my blood results and sent me on my way. Hope you're doing well GeorgeGlass and like I say "there's nothing like a good bowl of ice cream"

[j-o-h-n in reply to lincolnj8]

"there's nothing like a good bowl of ice cream"

You're a man after my own heart.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/10/2019 10:51 PM DST

[lincolnj8 in reply to j-o-h-n]

We live by Good Luck, Good Health and Good Humor j-o-h-n. Love that ice cream! Makes life worth living you know..

[lincolnj8 in reply to Break60]

Psa testing is so important

[BarronS]

What was your husbands PSA Nadir? The lowest that it has gotten? It's going to be impossible to know how much time he has left. If he hits a good drug, it could be a couple more years. The main problem is that it has gotten into the liver and bladder now, I wish there was something more that i could say to help.

[Tall_Allen]

Have they biopsied any of his metastases?

[Roshni-light in reply to Tall_Allen]

They have done bone and bladder biopsies. Both are prostate cancer related. Next is a liver biopsy

[Tall_Allen in reply to Roshni-light]

Have you looked into clinical trials of radiopharmaceuticals, PARP inhibitors, etc?

[Hidden]

When they did the biopsy, did they say anything about Neuroendocrine cells? These are often the kind of cancer cells that metastasize to organs and soft tissues. If that's the case, as Nalakrats said, he would probably benefit from Platinum Chemotherapy.

[Hidden]

Apart from the treatments proposed I would add Cannabis oil THC:CBD 1:1 beginning slowly. Could add with side effects and also give pain relief.

[Trengle]

Does your MO specialist in PC and where is your treatment being conducted?

[whatsinaname]

Ask your MO about Lu-177 and Ac-225. They seem to offer the best hope for your husband in his current situation, I think.

All the very best.

[larry_dammit]

Wow. That’s awful. I hate this monster, my treatment has worked so can’t chime in on the failure. Good luck. 🙏🙏🙏🙏

[Hawk99]

Only God knows how much time he has left but I would like to share what we learned in case it could be useful for you. My husband had PCa 7 years ago, was treated with 42 radiation treatments and Lupron, and last year the cancer returned with a vengeance. A bone scan at the end of August showed skeletal mets. and they gave him lupron, casodex, then xgeva, xtandi, then zytiga. He had several hospitalizations for dehydration, continued to lose weight, and PSA doubled every time they measured it. Like your MO, his MO said "It's going so fast". By Thanksgiving week his PSA was over 3,000 and he had lost 60 lbs. He passed away Nov. 25, just 3 short months after the metastases were found. I have wondered many times whether we should have stopped treatment earlier and let him just stay at home with pain meds. rather than struggling with expensive drugs, ambulance rides and hospitalizations, rehab. for PT, etc. We thought all this might squeeze out a few more months for him, but it was not to be. When God's plan for your life ends, nothing will help. Let your faith be your guide. Your job as caregiver is to make him comfortable and enjoy the moments you have together. I pray God's richest blessings for you on this awful journey. His grace will always be sufficient.

[Vorden99]

Diagnosed in 2016 stage 4 Gleason 10.

Went through all the medication you mentioned as well as carbo platinum. Think the carbo did a number on my bone marrow as hemoglobin is around 8.3. Need every month blood transfusion which increased it to 10.5 for a while. Found last week more lessons on lever and they are very concerned. Bone metastasis still expending. As I live close to Houston I am treated at MDA. They just put me on a once a week infusion of Vincristine , dexamethasone and cyclophosphamide. Mentioned lu-177 but my blood count is to low for clinical trial. Do not know what is left after all of this, getting more and more confused. I am 73 and still kicking.

Any comments or suggestions???

[Roshni-light]

My husbands hemoglobins also vary around 8.2-8.9. They give him procrit. We went to cancer treatment center in Atlanta- they were in line with our oncologist treatment plan. Bladder is riddled with tumors and there are 12 lesions in his liver. He’s in constant pain from bone Mets, meds and cbd take the edge. He has declined in health drastically over the last 2 months. He’s still getting chemo/ Jevtana. Currently he’s in hospital for 7 days for ulcerative colitis from recent radiation and chemo treatment.

[Bebby1]

Gleeson 10 stage four sounds almost the norm at times on this site

My husband also 12 months ago

Docetaxal which his body couldn’t tolerate

Oral cosadex

Three monthly zoladex injections

PSA rose eight weeks ago

Cosadex stopped

We see oncologist this Wednesday

?? Trial ?? New stronger hormone

The drug names differ from country to country

The weight loss sounds severe

But also diarrhoea and feeling unwell doesn’t help

I hope you have faith in your specialist as clearly there are many options st this stage

I wish you both the best

[bboby]

I am in similar shape . In addition to what Nalakrats recommended. This will ease the pain and slows down the progress .

He need to put 5-10 grams of Vitamin C in his blood , but How ?

Answer : Liposomal Vitamin C

Research here:

cancer.gov/about-cancer/tre...

connect.mayoclinic.org/disc...

killmycancer.com/natural-cu...

1- Shop from Amazon

2- Make it yourself at home :

wikihow.com/Make-Liposomal-...

nourishingplot.com/2016/05/...

Bob

[j-o-h-n]

Remember, God is on your side...

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/10/2019 10:54 PM DST

[Roshni-light]

I am heartbroken to let you all know he lost his battle with this horrible disease. He passed away yesterday surrounded by love and peace.

[SuppWife in reply to Roshni-light]

I'm so sorry. Peace to you and my deepest sympathy.

[Scoofer33 in reply to Roshni-light]

Dear Roshni-light,

I'm so very sorry to hear about the loss of your beloved. I'm sure you served him very well and miss him very much. It sounds like the last several years have been very wearing on your beloved, as well as you! People always talk about Quality-of-Life for the patient. I think they ought to consider the QoL of the caregiver. My heart goes out to you as you now walk the lonely side of this cancer pathway. I am going to be so sorry to leave my wife and children to navigate through this crazy world without me. Hopefully, I've taught my children to be brave, strong, and resilient. My caregiver already is. Blessings on you as this journey becomes one of needing others who are experiencing loss. Please avail yourself to the help that's offered.

[Tub111]

Oh Roshni 😥 I just came across this and am completely devastated by it. May you find some comfort soon in knowing the pain is over. I am here if you need...🙏❤️

Sheri

[Hidden]

I am so sorry for your loss. Please take care of yourself in this trying time as you have and are going through so much.

[Sam1962]

I’m very sorry to hear that you and your husband are going through this hell. As for time left; usually the doctors have a good idea when the cancer is as advanced as your husbands. Have you asked them? You should prepare yourself emotionally if you can. Jimmy Carter had brain cancer that spread and he was not suppose to live long but his treatments reversed his cancer. Perhaps you can look into what his Oncologist did to reverse the spread of the cancer.