5th yr of PCa and 4th yr of Metastasized, never had chemo or radiation.

[Gaited]

Friends, Greetings from the Northwoods of Wisconsin...

My husband is coming up on the 5th yr. since being diagnosed with PCa. and in his 4th yr of advanced PCa. { 3-10- 2019}

He had a prostatectomy 3-14-2019. Was given the all clear. In 2021 he was diagnosed with Advanced PCa , Received no other treatment {his choice} until 2023 when he went on ADT. In Oct. of 2024 he got a blood clot behind his left knee. and in Feb. of 2025 he had to have a SP Catheter { Suprapubic cathether} placed. Had the SP instead of the foley cath due to urine retention issues due to tumor blocking his uretha. Still on {3 month} Lupron but considering getting off of it as it seems not to be working. He will not try anything else due to side effects. He is starting to nap more, has no interest in doing to much, is in pain, still refusing pain meds except for ibuprofin, appetite is dwindling., and he seems, at times confused. He has become more affectionate with me and holds my hand, which is unuusal for him. He has not admitted to me or himself that he is dying. {Our wills and advanced directives are in place.} I guess my question is..... about how long could he have? I realize its not a black and white answer, but I need an approximante time table. I have a hospice nurse/neighbor coming to talk to him about options on pain meds. {He is worried about pain med constipation } He is weak and can't walk very far and walks hunched over a little bit. He can still plow our drivways and does a few easy house chores, but gets very tired quickly doing most things. I have had to start helping him get dressed and helping him get out of his chair. He is my hero and the true love of my life. I know there is no hope for recovery, the drs look at me sided eyed when I inquired as to his longevity, and never explained anything to us. Can someone please explain to me what I can expect in the coming months ahead.I feel he is in his last 6 months. Thankyou all.

[speranza10]

But has your husband never tried taking second-line hormone drugs?

[Gaited in reply to speranza10]

He was offered a second-line drug, , but the cost was to much for us to pay on a regular basis.

[Tall_Allen]

"Still on {3 month} Lupron but considering getting off of it as it seems not to be working. " That's a common error in thinking among patients. When one becomes castration resistant, the Androgen Receptor multiply on the cancer cell, so it is more important than ever to continue Lupron.

[Gaited in reply to Tall_Allen]

Thank you for your reply. He has a drs. appt. For his 3 month injection coming up, shortly. I will ask the Dr. to explain your point to him. Thanks again.

[Doctorsceptic]

I hesitant to be specific so I wonder if you could get a palliative care doctor to review him clinically and then to talk with you both about management and what to expect. I do think your regular doctors should be honest and open with you as this will make it less difficult to cope.

From what you have said his symptoms, including increasing weakness, occasional confusion and fatigue, point to advanced terminal disease and he has clearly decided that he does not want further active therapy. So there is no point in pushing this unless he changes his mind. Assuming that is the case, his tiredness and weakness will slowly progress probably over a period of a few months rather than weeks.

[Gaited in reply to Doctorsceptic]

You nailed it. And thank you for your truth in answering my question on longevity. He is over due for palliative care. He is a stubborn ol' Norwegian, but he is starting to come around to the realization that his time is limited. He is looking a at more years. I seriously don't see him lasting that long. He has already beaten the odds for survival over 5 yrs. He says 2 more yrs so all our house will be paid off. Bless his heart. I do have a hospice nurse ..(neighbor)coming in a week or 2 to explain the opioid pain meds and what ever else we have to do. Thank you for your reply. Very helpful.

[Lewellen in reply to Gaited]

Hello Gaited, I have a tear in my eye but I'm also smiling and laughing with recognition when you said that your husband is a "stubborn ol' Norwegian", but he's your hero.I'm a Minnesota Norwegian and while I may not be one of the "stubborn" ones, I have great respect for them. Solid. Trustworthy. Heroic. I've been lucky enough to be related to a few of them 😉

I don't have any treatment advice or suggestions for you but I would like to say something about longevity and hospice.

To my ears it sounds like you are just a small half step ahead of your husband in understanding what's ahead. But he's almost there with you. A little more information about how pain meds work during palliative care may help him, and you have already arranged for that. 👍

If that's the direction you're heading, I hope that you will find it a helpful, comforting, and even a graceful way to spend those last months and weeks together.

(I am currently saying goodbye that way to a dear friend, and it's working very well for both of us, and her family.)

If I may suggest a resource, I highly recommend a very recent book called Nothing to Fear. The author is Julie McFadden, RN. It's so easy to read, and full of clear, direct, information.

[lcfcpolo]

Sorry to read the issues that your husband and to be honest you, are facing. Please do ask about a second line hormone drug such as Xtandi or Zytiga. I'm not in the US but I'm sure many people in our group have been able to approach the manufacturer directly or even import from India. One separate point, when you do see your doctor, I worry about the blood clot risk of ibuprofen, so it may be worth asking for an alternative pain med.

[Gaited in reply to lcfcpolo]

Thank you for this suggestion. And the price of it is very doable.

[Gaited in reply to lcfcpolo]

Yes! I agree! He is quickly getting to the point where he is going to need more than IBU. Last night was very uncomfortable for him even with the IBU. Thank you for your comment.

[Derf4223]

2nd line ARSI Abiraterone (Generic Zytiga) available for about $100/month from the likes of Scriptco.com and/or Mark Cuban's pharmacy, et al

[Spinel_Cutter in reply to Derf4223]

Agreed. Currently you can buy generic abiraterone for about $100-$110 for 30 days (1 gram = 2 500 mg tablets). India used to be cheaper but is about the same these days, I was in Mumbai last December and bought some at $120/60 500mg tabs by Cipla. One possibility that I (nor anyone, really) can recommend but there's plenty of chatter, even amongst the medical community is that 250mg with a (I think lo-fat) breakfast gives about the same blood level as two 500mg tabs due to the "food effect." If push came to shove, I'd go that route.

There are plans if your family income is (I think) less than 350% of poverty for your state, they are free, but I can't tell how you find them. Mark Cuban has Abiraterone Acetate: Tablet • 250mg • 30 count, $23.69. Regular dosage would be (500mg on an empty stomach) so at Mark Cuban 60 count 500mg = $108.50. Beware of places that work with: "Oh the co-pay is only $540/a month and after 4 months, it's free (if on Medicare). One 250mg with a low-fat breakfast comes to less than $1/day. Welcome to America's strange medical industry.

[Gaited in reply to Spinel_Cutter]

Interesting! Thank you for taking the time to explain this. I appreciate it.

[NecessarilySo]

Sounds a lot like me. Could be just iron deficiency anemia and side effect of ADT. Check with blood test.

PS: I tried ibuprofen once and had to pee every 15 minutes. Switch to Tylenol.

[Gaited in reply to NecessarilySo]

That's interesting. IBU making you pee. My hubbs took... TAKES.. IBU and was up every 40 minutes all night before getting cathed.. Thanks for your reply.

[Professorgary in reply to Gaited]

It is interesting that Ibu is more dangerous than celebrex yet celebrex needs a prescription and Ibu does not.

[Gaited in reply to Professorgary]

Yeah... Go figure...

[Gaited in reply to NecessarilySo]

👍 He gets tested every 3 months when he gets his lupron injections. But I'm curious if they test for iron and anemia. I will ask next time we go. Thank you.

[NecessarilySo in reply to Gaited]

If he just gets a CBC, Complete Blood Cell count, it will give red blood cells and whether it is in normal range or not. If it is in the normal range, 4.4 to 6.0, then he is likely okay in regard to iron. Low RBC and low hemoglobin will suggest iron deficiency. He probably gets that CBC test quarterly, so if you check past results, you can see what is going on. If normal, then the problem lies elsewhere. He can request additional iron tests, like for Iron or Ferritin .

[Gaited in reply to NecessarilySo]

Oh! Great!. I'm taking notes so I'll be more informed at our next Dr. appt. Thanks again.

[RoseDoc]

So sorry to read about this.

Your husband has had minimal treatment for his disease. Many of the symptoms that you describe could be do to the ADT. You did not mention if he's had any scans, location of mets. What was his Gleason score at time of surgery? These would be important to know in order to give any intelligent suggestions.

Left with the minimal treatment, it is highly unlikely that he survives for 2 years. Might I suggest a conversation with your oncologist as to other treatments available. There are alternatives to Lupron that he may tolerate better. Adding a second drug would also be helpful, in most cases.

If the goal is 2 more years, I would suggest a more aggressive approach. It is a personal decision to be made after going over the options with your MO. I wish you both all the best!

[Gaited in reply to RoseDoc]

Thank you, RoseDoc,Yes my husband had bone scans 2 yrs ago. He has tumors on his ribs, neck, hips, his gleason was 8. His Dr. has not ordered more scans stating there's no need. That floored me. At any rate, I agree with your assessment that he will not make it 2 years. I feel he is in his last 6 mos.... But when his friends see him, they say he ..."Looks Good" ... and , "Well, he doesn't look sick.."... So that makes me think I'm over reacting?. But my gut tells me the truth.

Thank you for your suggestions and well wishes. I appreciate it.

[RoseDoc]

Gleason 8 is an aggressive cancer. Again, I am surprised with the lack of aggressiveness here. He may be a candidate for triple therapy. The side effects are not much more than he is experiencing now and should prolong his life. Have you discussed radiation to the more painful lesions?

I would recommend seeking a second opinion from a center of excellence. Dr. Kwon at Mayo is amazing and well worth the trip to MN. He can coordinate care with a local oncologist. I do not know where you live but Hopkins, UCSF, MD Anderson, Memorial Sloan Kettering are all excellent places. I would be more aggressive. He can feel and do better with more aggressive care.

[Gaited in reply to RoseDoc]

We are in North Western Wisconsin, Just a stones throw from the Minnesota border. Great idea about seeking help from the Mayo Clinic. These drs here are very disappointing to me .Their lack of concern is mind boggling. It would help if my husband were more open about his symptoms. He hides his pain and always says.. I'm fine. 🤦‍♀️ (Men... 😉) Thank you for the Dr's names. I will give them a call!

[RoseDoc in reply to Gaited]

You are most welcome. I highly recommend Dr. Kwon. If you need help contacting his office, message me.

[Gaited in reply to RoseDoc]

I will. Thank you so much. 💓

[j-o-h-n]

Greetings Gaited,

Got any family (offspring, siblings cousins etc.) who can help? Tell him that anyone in his state of mind uses a thing called Norwegian Would 🤡 to beat his Pca. Tell him I want to see him out of bed, walking around the house and laughing his raeva off. I would normally visit him in the middle of the night so that we could exchange man talk, but right now I'm in New York City doing strip tease shows at senior retirement centers. Regards to him and to you and keep the faith (keep posting).

Good Luck, Good Health and Good Humor.

j-o-h-n